Got Down Syndrome's Blog

Life On The Ranch: Winter Walk

2012-01-25T07:37:00.000-08:00

I've been a total slacker when it comes to blogging lately. I just haven't had enough time to blog on a regular basis at the moment, although hopefully I'll be able to start picking up on the blogging.

For now, I will share some pictures from a walk I went on with the kiddos the other day. This winter has been so incredibly mild, I almost feel like I'm in a winter from the California High Desert again :).

We've had so many beautiful days that are 50-60 degrees.

Although the temperature doesn't feel like winter, it certainly looks like it with all the bare trees.

Peppy, the llama. He's a funny little character!

O wanted to play a hide-and-seek game on the walk, so we all did.

O's trying to find the rest of the kiddos!

O checking out something up high :).

Pro-Life? 100% Pro-Life?

2012-01-17T13:17:00.000-08:00

I typically do not post political topics on this blog, but because I feel this has a lot to do with the future of our country, including individuals with Down Syndrome, I feel this is necessary to share. I won't constantly post about this. I feel there may be some who won't like me for posting this, which is fine with me. And there are others who will be very glad I posted this.

What if there was a presidential candidate who was so pro-life, that he wanted to repeal Roe v. Wade? What if there was a presidential candidate who was so pro-life, that he wanted to make a Congressional Act that would define that life starts at conception?

Could you imagine, if the above two things were done, how many more babies could be born, because abortion would federally be illegal? Could you imagine instead of 9 out of 10 babies with Down Syndrome being aborted, that all of them may be born, because abortion would not be legal?

Right now, that seems like such a far cry and it is with the sad state of our nation. But, there is one candidate who wants to change that. He wants to give life & liberty to everyone, especially the unborn.

This man's name is Texas Congressman Ron Paul. He is the only candidate who is absolutely 100% pro-life. He is an OB/GYN who has delivered over 4,000 babies. He is right on with so much more and he wants to Restore Freedom to America. Please look into Ron Paul. Vote for Freedom. Vote Ron Paul 2012. You can find more details on my other blog here.

www.ronpaul2012.com

www.facebook.com/ronpaul

Dr. Turkel's Book, Part 5: The Ruin of the U-Series By The FDA

2012-01-13T17:23:00.000-08:00

Well, I know it's been much longer than I had wanted to get this 5th part of Dr. Turkel's book up. But, blogging has been slow the last few weeks.

You can see the first 4 parts covering his book at these links: Part 1, Part 2, Part 3, & Part 4.

As I mentioned in Part 4, even though Dr. Turkel had amazing success and great results with his U-Series, there was massive unacceptance by the "big wigs"....doctors, associations, the NIH, and even the FDA. But ultimately the FDA would cause the most damage to his U-Series.

Dr. Turkel started applying for New Drug Approval from the FDA in 1959. It was the start of many years of a saga. It ended with parents not being able to receive the U-Series from their doctors and eventually closing Dr. Turkel off to only supplying patients in Michigan with the U-Series.

There are two chapters that cover this full saga in Dr. Turkel's book. I will attempt to give a general overview, but it is quite involved.

The first requirement was that he have a clinical study for his U-Series. That's fair enough, but then the doctors who were supposed to be conducting this study, changed what the children in the study were receiving and were not giving them the full U-Series. They also did not cooperate with Dr. Turkel's approach, therefore causing more problems. There were many other problems with the conduction of the study and it was also terminated before it was supposed to end.

Instead of just a clinical study (which was attempted, but had problems, as mentioned above), the requirement then turned to needing to have the study be a double-blind clinical trial. Dr. Turkel argued that there was too much variance in individuals with DS to accurately do a double blind study. But, eventually he agreed to let it be done. There are many potential problems with a double blind clinical trial and Dr. Turkel's book discusses this.

Dr. Turkel attempted to comply with FDA regulations for 25 years without success.

In 1959 when Dr. Turkel went to the FDA to request the New Drug Approval, Trisomy 21 had just been discovered as being the cause of DS. But, many did not know the full implications that the extra genes and proteins caused on the triplicated chromosome. Because of this, the FDA did not consider the potential causes that could be caused by them. As Dr. Turkel's book states,

They [the FDA] dismissed the argument that the extra genes explained the presence of accumulations that the "U" Series was designed to reduce. They mistakenly concluded that since he "U" Series could not remove the chromosome, it could not help the patients.

Some may wonder why Dr. Turkel attempted to get approval from the FDA. This is why,

Dr. Turkel admits that he was a novice in politics. He believed that if a physician developed an efficacious treatment for a devastating and previously untreatable disease, that the Federal agency charged with consumer protection and health would provide assistance. Former FDA Commissioner Edwards likewise stated that the agency existed to promote the approval of beneficial products. It was obvious to Dr. Turkel that the "U" Series was beneficial. The actions of the FDA bewildered him.

Some of the roadblocks Dr. Turkel ran into from the beginning are as follows,

On page 210 of his book, it states

Between 1959 and 1962, the FDA failed to advise Dr. Turkel how to comply with the existing requirements. The FDA did inform him that a drug company had to be the sponsor of the IND and NDA. To comply, Ubiotica Corporation was formed to sponsor the "U" Series.

In 1962 the FDA created a new guideline for getting drug approval and that is where the "proof of efficiacy" (the clinical studies which he was told to do) come in.

But, it wasn't until 1963, that Dr. Turkel was advised on what to do next by his attorney. He was advised to file an Investigational New Drug (IND) and New Drug Application (NDA). This is what happened after he did that,

November 26, 1963, FDA Commissioner Larrick sent Dr. Turkel a telegram and letter informing him that the IND had been withdrawn and, furthermore, that the "U" Series "should" be withdrawn from investigators, and that treatment of human beings "should" be discontinued.

Dr. Turkel, being a novice in politics and the workings of the FDA, took the above letter as saying that he had to stop treatment with the "U" Series. So, for 6 months he did not use it until there was a meeting with a Senator to address the use of the "U" Series with a particular patient.

Once the IND was withdrawn, Dr. Turkel attempted to comply with the new regulations put into place in 1962. Yet, there were some problems with the cost, as is written on page 211,

He did not know that they were so "stringent" that it cost millions of dollars for new drug approval (the average cost in 1984 was $87 million over a period of seven to ten years).

Dr. Turkel went ahead to try to conduct animal studies in an FDA approved laboratory. Yet, he had some concerns.

Dr. Turkel expressed concern. He asked his attorney whether, having set up the protocol and approved it, the FDA might then later consider it inadequate. The legal opinion was "in the even such [studies and] amendments are accepted as suggested by the FDA, we do not contemplate that at any later date the FDA will take a position that said tests are insufficient for the purposes designated . . ."

...As it turned out, Dr. Turkel's forebodings were more accurate than the legal assurances.

The book states on pages 213-214,

Regardless of the outcome of the studies, the FDA seemed unwilling to approve the "U" Series:

"We think it will be difficult for Dr. Turkel to prepare a rational plan for the further distribution of the drug for investigational use." (Smart, 1/23/63)

"There is no basis for considering that the random, empirical and scientifically irrational choice of drugs and dosages contained in this NDA is either safe or effective in the management of Mongolism. It is our opinion that it may be impossible to write suitable labeling for efficacy for this product: in view of the cytogenetic basis of mongolism, we recommend that you abandon work on this application. " (Lockhart, 8/2/63)

"It is extremely unlikely that this product will ever meet the stringent requirements of the Food, Drug and Cosmetic Act, as amended." (Hodges, 12/12/66)

Common sense dictates that medication for the treatment of a serious disease should be not withheld solely for the above-cited reasons.

Unfortunately, common sense isn't so common. And Dr. Turkel would continue to find out the FDA had a serious resistance to his U Series, yet he wouldn't ever find out the exact reasons as to why they would not approve it, as is written on page 215,

...No reason has been given for the FDA's failure to assist a physician who sponsored a new drug,...

Dr. Turkel eventually requested a hearing with the FDA as to why they would not allow approval of the "U" Series and his hearing eventually went all the way to the Supreme Court. The final ruling was by the Sixth Circuit Court and it was found the the "U" Series had no basis for use, because it could not remove the extra chromosome.

Dr. Turkel even attempted to get more recognition by the FDA by working in foreign countries and prescribing the "U" Series in Switzerland (many European countries were successfully using and approving the "U" Series for years). But, it was still to no avail.

Finally the FDA limited Dr. Turkel's shipment of the "U" Series between the states and allowed him only to use it with patients in Michigan...even though it was not regulated by the FDA, because they had never allowed approval of it.

It's a sad situation that Dr. Turkel ended up in. It's a shame and disgrace that an agency in the US has the ability to deny potentially helpful treatments to people with Down Syndrome.

Gluten-Free Flat Bread

2012-01-12T12:03:00.000-08:00

Sorry for the lack of blog posts lately!

This is a new favorite recipe around here - Flat Bread. It's really easy and absolutely delicious. It goes great with soups, or even snacks. You can season it anyway you want, so you can make it sweet or savory!

The recipe below was done to make it savory, since we had it with soup for dinner.

Gluten-Free Flat Bread

Ingredients:
1 1/2 cups flour
1 egg
3/4-1 1/2 cups water
1/2 teaspoon salt
Italian seasoning, Parsley, Cumin Powder, Pepper or whatever desired seasonings (optional)

Directions:
*Preheat oven to 350 degrees.

1. Add all the ingredients together.

2. Mix until all combined.

3. Add any seasonings you would like at this point. I added Italian seasoning, Parsley, Cumin Powder and Pepper.

Mix the seasonings in (I had some help from a little O-man :)).

4. Oil the pan you will be baking it in, then spread the doe on the pan (it should be thin enough to spread well with just a little spreading help from a spatula). I used a regular cookie sheet and had the doe go 3/4 of the way up the side of the pan.

5. Place in the preheated oven. Bake for 15-25 minutes or until the flat bread is starting to crack, bubble and turn light brown on the edges.

The finished product with a few toppings added to it!

Blog is On Facebook Now!

2012-01-06T14:17:00.001-08:00

I thought I'd make a Facebook page for the blog, after I saw several other DS bloggers do it. Why not, it's just more exposure :)!

So, you can go over on the side of the blog and "like" us from the like box there, or go here to see the page.

I'm working on a few blog posts and hopefully will have more consistent blogs the next few days :)!

Target Features A Child with Down Syndrome!

2012-01-06T14:12:00.000-08:00

As many people have probably already seen, thanks to NoahsDad.com, Target has included a little boy, Ryan, with Down syndrome in one of their ordinary ads.

That is what is making the Down Syndrome community buzz. They didn't put him in a 'special ad for special people'. They didn't put any words to point him out on the page as anybody different. They just included him as one of the other cute little kids in the ad. That is pretty cool.

Ryan is one cute little boy! Nordstrom also featured him in one of their ordinary ads. Here's a picture of both of those ads:

The original post which started all the Buzz can be seen over at Noah's Dad's blog here. The Today Show also ran a story about NoahsDad.com and what Target and Nordstrom did, which you can view here.

Life On The Ranch: New Years Party

2012-01-03T13:17:00.000-08:00

I tried to put a post up yesterday, but the internet and blogger were tweaking out.

We had a neat New Years Party on Saturday. I'll just share a few pictures from it.

Confetti made for the kick-off of the party...

Some of the decorations...

The balloons which we dropped at midnight...

There was lots of yummy snacks for the night.

Coconut Cookies (recipe to come soon, Lord willing)

Deviled Eggs (a party favorite around here)

New Years Cakes

Jello snacks

Homemade refried bean dips (recipe to come soon on these as well, Lord willing!)

Since we had a karaoke & lip syncing contest for the night, we had to get the speakers and microphones set up.

The kiddos had fun doing funny things with their hair...dying it with a temporary dye :).

Hope you had a great New Years as well!

Happy New Year!!

2011-12-31T12:00:00.000-08:00

It's amazing to think that it's already 2012. As everyone says, time surely goes by fast! I feel like it was just yesterday that it was the New Year of 2011.

God has given us another year to be thankful for. For that I'm grateful.

We're having a New Years Party tonight, so will share pictures from that after the weekend, Lord willing!

Gluten-Free Poppy Seed Muffins

2011-12-30T07:00:00.000-08:00

The way I like to bake gluten-free, is to find a regular gluten recipe and replace the flour with GF flour. I have rarely had something turn out wrong :). So, here's another recipe that I did that too. I found this recipe on AllRecipes.com and turned it gluten-free!

Gluten-Free Poppy Seed Muffins
Yield: 2 dozen regular muffins, 3 dozen mini muffins

Ingredients:
3 cups gluten-free flour (I used rice flour)
2 1/2 cups sugar
4 1/2 teaspoons poppy seeds
1 1/2 teaspoons baking powder
1 1/2 teaspoons salt
3 eggs
1 1/2 cups milk
1 cup vegetable oil
1 1/2 teaspoons vanilla extract
1 1/2 teaspoons almond extract

Directions:
1. In a large bowl, combine the flour, sugar, poppy seeds, baking powder and salt. Mix together. Add the eggs, milk, oil and extracts. Mix into dry ingredients, just until moistened.

2. Fill greased muffin cups 1/2 to 2/3 full. Bake at 350 degrees for 20-25 minutes or until golden brown and a toothpick comes out clean.

3. Cool for 5 minutes before removing from the pan. Let cool on a wire rack.

Enjoy!

"Panic" To Stop the Down Syndrome?

2011-12-29T07:00:00.000-08:00

When a family finds out their child has Down syndrome, they want to be able to find out what they can do for their child. Some of those families look into supplements and drugs to help their baby, which I think is great.

But, there are some who feel that families who start their baby on supplements so quickly (at a young age - just weeks to months old), are in a "panic" about the Down Syndrome and feel the need to "do something" to stop it.

For some families this might be the case, but more often then not, the families I have talked to are not in a panic about what they can do. They simply want to do what is best for their baby and give their baby what they feel is the best chance to do well. For some families, this means starting their baby on a variety of supplements and possibly drugs as early as possible.

We did not find out about any sort of supplemental/nutritional intervention for O until he was 8 months old. Had we found out about it when he was younger, we could've looked like we were in a "panic," because we would have started Nutrivene-D when he was just days old.

But, it's not because we want to stop the Down syndrome. It's because we want to do what we feel is best for O. And I believe that's where most families are coming from.

The earlier you can start supplementation to combat the negative effects of the extra chromosome, the better. The more time that goes on without intervention to combat the harmful aspects of Trisomy 21, the more damage that is done. You cannot fully stop the oxidative stress, mental retardation, or neurological concerns with just supplementation, but you can slow them down a lot.

I fully support and encourage parents who want to start supplementation as early as they feel is safe. For some parents that may be from day 1 and for others, that may be at a year old. For some, it may be a long list of supplements, and for others it may be a more conservative list, which slowly gets longer as the child gets older.

The biggest concern here is to make sure you, as parents or caregivers, are fully researched and convinced, in your own mind, regarding any supplement or drug you give your child.

There are things to be cautious of, especially for a young baby. You don't want to overload their system, particularly their gut, especially if they have GI concerns. But that's where researching what you are going to supplement with comes in. If you are well researched, have talked to others who are knowledgeable, you are on the right track.

I would not want to discourage someone by saying they are in a "panic" about the Down syndrome. In a sense, there is a race against time which is very real and this is why I think it's very important for supplementation to be started at an early age.

Wordless Wednesday: Gluten-Free Goodies .... again

2011-12-28T13:35:00.000-08:00

For recipes, see http://hanunyahssweetcreations.blogspot.com

Still here!

2011-12-23T11:37:00.000-08:00

This past week has been a rough week with the sickies going through our family. Most people in the family have gotten the flu that was going through, but it sure goes slow when there is 13 people in your family!

I'm behind on some jobs due to this, so I may not get any blogging done for a bit here. Hopefully I can squeeze some in over the weekend, but if not, then the ideas I have for posts will have to wait :).

Just wanted to pop in here though to say I'm still here!

Have a great weekend!

Helping Sinus Infections

2011-12-18T07:00:00.000-08:00

Sinus infections are another common problem present in the cold, winter months. On the post I did last week on Boosting the Immune System, Ellen, asked if I had any tips to share for dealing with sinus infections.

We would use some of the same supplements to boost the immune system (for more dosing details see the link above):

-Echinacea
-Vitamin C
-Vitamin A
-Vitamin D
-Vitamin E
-Zinc
-Glutathione

But, there are also a few additional things we would do.

-Glutathione Nasal Spray
This is quite easy to make and works wonders for sinus problems. Buy a regular Nasal Saline bottle and add Glutathione to it. We use a liquid GSH called LipoCeutical Glutathione. You can use powdered GSH out of a capsule if you want as well.

For 2/3 cup of saline you would put 150mg of Glutathione (either liquid or opened capsules) and 1/4 teaspoon Xylitol (optional).

Spray this up the nose as often as you would like! It really helps clear the airways quickly and helps make the sinus infection go away.

Another product that can be helpful is Sambucol. We haven't used it, but I know of many others who have used it with great success. Sambucol is a black elderberry extract supplement. They have various formulas - for kids, general immune support, colds, etc.

You may also do daily sinus irrigation to help keep the congestion clear and prevent colds. I know one mom who's ENT recommended this for her son who was regularly having sinus infections and having to go on antibiotics. This one mom, Kelley, found several different sinus irrigation kits for kids, but found one that works very well and gently. It's called SinuCleanse Kids Mist.

Hopefully this will help keep your kiddos free of sinus infections, or at least clear them up before having to go on antibiotics!

Using Evening Primrose Oil, Is it Good or Bad?

2011-12-17T07:00:00.000-08:00

Evening Primrose Oil is commonly used as a vegetarian source for essential fatty acids (EFAs): omega 3's, omega 6's, gamma linoleic acid (GLA) & linoleic acid (LA). This used to be commonly be recommended by those in the supplementation world of DS, but then after more current research, the recommendation was reversed.

Dr. Leichtman used to recommend the use of EPO as well (as his website states, but that is out of date), but presently does not recommend it.

When we first started supplementing with TNI, Omega 3's, etc, I remember all the talk of how people used to use EPO and switched to another source. Recently I've been seeing a lot of families starting to use EPO again and it's raised questions and concerns in my mind. Because I recall there being a concern back in the day, but I couldn't remember the exact reason for why.

Well, because my research side of me wants to be informed, I looked up the use of EPO again.

It is true that there are benefits that EPO can give. Andi over at Down Syndrome: A Day to Day Guide shares some good info on her blog here. Since Andi has all the good info on EPO on her blog, I won't explain it all here :).

But, there are also risks involved with giving EPO. Omega 6's are essential fatty acids, but they must be given in moderation, as they can increase oxidative stress.

The two main fatty acids EPO converts to is GLA & LA. Both of these, but particularly, LA have been shown to induce oxidative stress & damage, as well as programmed cell death (apoptosis). While, certain amounts of LA and GLA can have some antioxidant states, they more commonly increase oxidative stress.

There is so much extra oxidative stress in people with Down syndrome due to the overexpressed genes on the 3rd chromosome. In DS, there is not enough antioxidants to battle this already highly oxidant state.

I am hesitant to supplement with a product that is known to increase oxidative stress, however mild it may be. While EPO isn't a very high pro-oxidant vegetable origin of omega 3's, it does still encourage a pro-oxidant state.

While there are no studies, as usual, on EPO in people with DS, you can see a couple studies here and here.

One quote from the discussion of the second study is below,

The possibility arose by in vitro experiments that a high intake of LA would increase oxidative stress in the body is supported by the results of our strictly controlled human experiment... ...although the intake of antioxidants and plasma levels of a-tocopherol of our subjects were well above recommendations.

Flax seeds that are freshly ground are a much better source of vegetarian omega-3's & 6's, but it is harder to quantify. EPO may be okay to give, if it is given in small amounts. I do not feel comfortable giving it at all, therefore we stick with fish oils for our essential fatty acids.

Dr. Turkel's Book, Part 4: The Unacceptance of the U-Series

2011-12-16T13:15:00.000-08:00

You can see the first three posts covering Dr. Turkel's book here, here and here.

Because Dr. Turkel had seen such great results with the "U" Series, he decided to try to get the FDA to approve it. Doesn't seem like it is that big of a deal, but it was such a huge deal, that it eventually cost Dr. Turkel the ability to be able to use the "U" Series.

Besides the problems Dr. Turkel received from the FDA, he also received many negative responses from many other national associations.

Back on Page 8 of the book in Dr. Bernard Rimland's Foreword, he wrotes,

Supporting Dr. Turkel's position that the "U" series is effective are the reports of dozens of other physicians around the world who have used the treatment successfully, including some 50 U.S. physicians who were using it until the U.S. Food and Drug Administration (FDA) arbitrarily interposed itself between the doctor and the family of the sick child and forced the doctors to discontinue the treatment.

These are the pro-Turkel arguments. You will agree, I think, that until conclusive contrary evidence is produced, until some evidence turns up showing that the treatment does not work or is harmful, any physician who wishes to use the treatment to try to help his pathetically helpless patients should be permitted to do so. Surely, one would think, it would take substantial and convincing negative evidence to withhold the use of this harmless, promising treatment when there are no alternative methods and the disorder is so devastating.

There is no substantial and convincing negative evidence. There is only one study in the world literature which questions Dr. Turkel's findings, and it is a trivial, improperly conducted, and inadequately reported study.

It is trivial because only twelve children were in the experimental treatment group. So small a sample can lead to findings which are suggestive but not conclusive, even if the study were properly done. It was improperly conducted because, among other shortcomings, it did not follow Dr. Turkel's specifications for the "U" series drugs it was supposed to be evaluating. For example, the investigators included vitamin D in their version of the "U" series drugs and vitamin D counteracts the effects the Turkel treatment is designed to achieve!...Note the authors of the negative report did not report any adverse effects on the children - they said simply that the treatment did not help.

This is a small sample of the problems the FDA caused Dr. Turkel. In 1982 Norway accepted the use of the "U" series and the Japanese were able to import the "U" series from Europe, because the FDA refused to let the Japanese import it from the United States. Both Norway and the Japanese had tremendous results!

But, Dr. Turkel still had resistance from the FDA and NIH, which started years prior to this. On page 133, Dr. Turkel writes,

Dr. Richard Masland, Director of the National Institute of Neurological Diseases and Blindness, stated in a letter to the President of the Valley Association for Retarded Children (Connecticut):

'A serious problem related to the evaluation of such a treatment is the fact that it requires the treatment of a rather considerable number of children observed over prolonged periods of time to achieve a valid conclusion'

(January 8, 1962)

The National Institutes of Health (NIH) have not, to date, found a single investigaor willing to conduct a study, even though a considerable number of children have, in fact, been treated and observed over prolonged periods of time. Since the scientific community requires studies, the NIH could be conducting them (page 134). However, the NIH have generally failed to acknowledge the existence of treatment.

This is essentially the bottom line to Dr. Turkel's problem with the FDA, NIH and many other organizations: failure to acknowledge the existence of treatment.

Dr. Turkel continues on page 135,

Articles have been published in lay and professional journals about the "U" Series, and the medication has been mentioned in numerous books, in many languages, particularly Japanese and Norwegian, as well as English. However, the NIH published their own bibliography without mentioned The "U" Series or any of the other then-current therapies; evidently, the priorities of the Federal government do not include treatment.

The larger voluntary health organisations (sic) have also not been receptive toward treatment of Down syndrome. The Foundation for Infantile Paralyisis - March of Dimes elected not to close shop when polio was conquered. After entering the field of birth defects, March of Dimes promoted prenatal screening as the answer to the problem of Down syndrome (if the pregnant woman is in a high-risk group). However, after a Down syndrome child is born, help to the family is insufficient. It is expensive to raise a mentally and physically handicapped child. Additional emotional and economic support should be made available.

In Dr. Turkel's quest to find someone willing to do research on the "U" series in people with DS, he talked to the National Association for Retarded Citizens.

...NARC headquartered in Texas) announced that "Big Dollars" were needed to find treatment for Down syndrome. None of this research was aimed at perfecting available therapy. NARC is to be commended for bringing retarded citizens into the mainstream. A less dogmatic attitude of its research teams about nutritional therapies would also be helpful to patients.

For reasons that NARC has not clarified, in 1956, when I presented my findings to Dr. Gunnar Dybwad, Executive Director of NARC, intending to give over the "U" Series without cost, Dr. Dybwad told me that NARC was "not interested"

Dr Turkel was rejected for trying to get research done on the "U" series and the national associations simply refused. And in doing so, they also accused Dr. Turkel of exploiting families and unethical behavior for presenting medical findings to people who were not physicians. One of those people who he showed his findings to was Dr. Dybwad and also a nurse who attended a meeting.

As he writes on page 138,

The emphasis that larger organizations place on basic research is easy to understand. However, through the years, some of these organizations have been particularly negative about ameliorative therapies.

...There is a remarkable lack of scientific curiosity about medical therapies. Scientists want to find a basic solution, a method of removing the extra #21 chromosome from every cell in the body. But parents of newborn Down syndrome infants are still being told, "Nothing can be done. Institutionalize them." The handicapped infant's right to live has become controversial.

He continues on page 139,

The possibility of improving the overall condition of the Down syndrome patient may also alter the pessimistic view of American parents and physicians.

That is still a problem today, unfortunately. Even though Dr. Turkel fought long and hard for the help of patients with DS, there is still a "fear of supplemention," if you will. I just wrote about this in the "Afraid of Change?" post a few days ago.

Dr. Turkel compares his treatment with the "U" series as the treatment for PKU. On page 140 he writes,

This situation may appear as hopeless as that encountered in Down syndrome but physicians have not abandoned the possibility of treating the patient. On the contrary, laws have been passed requiring neonatal diagnosis so that the disease can be treated early in life, preventing much of the damage and retardation.

So, because of this commonly accepted treatment to ameliorate the problems caused by PKU, why did Dr. Turkel receive such negative responses to his "U" Series?

Even Dr. Jerome Lejeune who discovered that DS was caused by a triplicated 21st chromosome, used supplementation to help people with DS. On page 170 of the book Dr. Turkel says,

I believed then as now that amelioration of Down syndrome was a worthwhile goal. When I met Dr. Lejeune at an international convention in the Netherlands in 1963, I was stunned by Dr. Lejeune's question, "Can your patients do cube roots" (sic) Now that inexpensive calculators can perform that function, this feet possibly seems less impressive: Dr. Lejeune treats Down syndrome patients with some of the same vitamins and other nutrients included in the "U" Series. For 20 years, however, improvement of ameliorative therapy was forestalled by the medical opinion that failure to cure a disease somehow diminished the importance of treatment.

Dr. Turkel mentions one of the reasons he received such criticism above, but you can see more of it in these two quotes from pages 172 and 175,

The medical consensus that there were no metabolic imbalances in Down syndrome was so deeply entrenched that as recently as 1977, some medical students were still being taught that the extra genes encode structural defects before birth and then "turn off". It is now recognized that a third copy of one whole or partial extra chromosome disrupts homeostasis and all functions.

...Dr. Frank Menolascino has noted the difficulty of designing studies to test the intelligence-enhancing effects of drugs. He has pointed out that therapy "to enhance the intelligence of a college student would be expected to improve his learning, memory, and general performance. A moderate and gradually accumulating effect would be considered desirable and quite acceptable. However, with a retarded person a drug is often scorned if it produces anything less than a complete and perhaps even a rapid 'cure' -- unless it produces 'normality.'" This point is applicable to the GTC Formula as well as the "U" Series.

This gives insight into the struggle Dr. Turkel dealt with continually. In the next post, I will share the struggle he had with the FDA and the ruin they caused him.

Fats & Oils

2011-12-13T15:07:00.000-08:00

This is an article which is in our book. I thought it might be a helpful article to some, so figured I'd share it. Ginger let us use several of her articles in our book, as she always had lots of good info to share!

Fats and Oils

By Ginger Houston-Ludlam

Editorial Comment by Ginger: Supplements will not correct a lousy diet. If you are filling your kids
with trans fats and then taking a fatty acid supplement, WHATEVER its omega content, you are fighting a losing battle. Much of my reading and study of late has been dietary in nature and I am more convinced than ever that this is the real key to fatty acid balance, not just pills.

I want to do a very short chemistry lesson on fats before we start in, because I think a slightly deeper understanding of fat chemistry is in order before we start talking about the peripheral topics. It really helps to know the difference between a saturated fat, an unsaturated fat and a trans fat before we start discussing omegas and so forth. It's taken me awhile to sort it all out, so let me lay this stuff out on the table before we proceed.

A fatty acid is, mostly, a chain of a bunch of carbons and hydrogens. Carbons have 4 bonding sites. (For completion, oxygen has 2 bonding sites and hydrogen has 1.) In other words, 4 things can be attached to a carbon. If you think of tinker toys, it is a spoke with 4 holes in it to plug other stuff into. When a carbon is in a chain, 2 of those sites are attached to the carbons on either side. A fatty acid is a chain of carbons with hydrogens everywhere except one end. On that end is a carboxylic acid group (this being why it is called a fatty ACID) which means that it has 2 bonds to an oxygen, and a hydroxyl, or oxygen with a Hydrogen on the other open bond. Here is a drawing of a 4 carbon, short-chain, saturated fatty acid called butyric acid. This fatty acid is almost exclusively available in the diet from butter from grass-fed cows (dietary sources of fatty acids will be discussed later).

Fatty acids are characterized by the number of carbons in the chain (the carbon "skeleton"), whether or not they have any double bonds between the carbons (unsaturated bonds), where those bonds are (the omega number) and whether or not those bonds are "cis" (the natural form) or "trans" (the
mostly man-made form - bad, bad, bad!)

A saturated fat is one where the carbons in the chain are connected to each other with single bonds, and have hydrogens on all other available bonds (except the acid end). When one of the bonds between the bonds is a double bond, the fatty acid is now said to be monounsaturated - or one point of unsaturation. If 2 or more bonds are double bonds, the fatty acid is said to be polyunsaturated.
Unsatured fats are further characterized by the "omega" number. An omega-3 fatty acid has its first double bond between the third and fourth carbon counting from the non-acid end. An omega-6 fatty acid has its first double bond between the sixth and seventh carbon, etc.

Now let's talk about cis versus trans bonds. Yes, I hear the groans. It is important to understand this to deeply understand why trans fats are so bloody dangerous to our kids!! When a carbon is single bonded to another molecule, say another carbon, it really isn't in a straight line like drawn above. It is really more like a zig-zag like this:

It should look like carbons connected to each other in a zigzag. The angle between bonds is 109 degrees. When a carbon double bonds to something else like another carbon, that bond angle changes to 120 degrees.

So, if you were looking at a carbon chain with a "cis" double bond in space, it would look like it had a "kink" in the chain. If there was another point of unsaturation later on, the chain would have another kink in it. These kinks are very important in terms of the function of these molecules, and
also in terms of how the enzymes in the body (which turn these fatty acids into lots of other important stuff like hormones, prostaglandins, triglycerides, phospholipids, etc.) "see" them. Enzymes are highly shape dependent, and if the molecule is the wrong shape, the enzyme won't work.

So, back to our kinky chains. (There, that should spice this up a little!!) In real life, most of our fatty acids should have cis bonds - this is a description of what happens to the chain on the either side of the double bond. If you have a cis bond, the carbons on either side of the double bond would be on the same side. Visually, it makes a bowl instead of a stair.

Here’s a drawing of a Cis bond:

What you should have is a carbon with a bond down to another carbon with a double bond to a third carbon with a single bond back up to the fourth carbon. You see what I mean about it looking like a bowl?

Now, here is a trans bond:

The carbon is bonded down to a second carbon double bonded to a third carbon, bonded down to a fourth carbon. See how it looks like a stairstep?

If you hang a carbon chain out on those carbons that I have drawn on the ends, you will see that the cis bond gives you something with a kink in it, but that the chain with the trans bond ends up looking almost straight.

Enter the enzymes. "I am an enzyme that operates on unsaturated fatty acids. I am in search of a curvaceous, single fatty acid with a kink in her sixth carbon for walks on the beach and eventual permanent bonding." He's going to examine all fatty acids that respond to his ad, and summarily
reject any fatty acid that does not have the right shape, such as the one with the trans bond. All the enzymes for saturated fats will think she's the right shape, but there's that unsightly double bond. So, poor little trans-fat, after being rejected by enzyme after enzyme, will run away from home, pierce her bellybutton, buy a Harley, and run around with a bad crowd of free radicals crashing cell membranes, loitering in arterial plaque, and otherwise making mischief. It is very hard for the body to deal with these fats, because all of the enzymes are set up for fully saturated fats or cis-unsaturated fats. Trans fats, being neither fish nor fowl, are just not dealt with very well. I understand from those who have studied it that it takes YEARS for the body to rid itself of trans fats.

So, where do you get these trans fats? Look on the labels for "partially hydrogenated (whatever kind of) oil". It's in practically every baked good in the standard grocery store. It's in standard brands of peanut butter. (Choosy mothers pitch Jif!!) It's in every fried good in every fast food restaurant. It is the main ingredient in Crisco or other shortening. We are practically swimming in the stuff. That's one of the reasons that I shop at the local Fresh Fields - it's still packaged stuff, but at least it is organic and it doesn't have trans fats. You can find replacements for most familiar products, although they will taste a little different.

OK, enough on Frankenfats.

So, you've pitched the Jif, the Ritz, the goldfish (yes, those too!), and burned your Safeway savings card in effigy. You have replaced them with Eastwind Almond Butter (yummy!), Hain crackers etc. So where do we go from here?

Based on my reading, I have come to the conclusion that the first thing we ought to consider doing is replacing a lot of the unsaturated fats in the diet with saturated and monounsaturated fats. Yes, you read that right. A collective gasp goes up from the audience. THIS IS HERESY!!

You know, I bought into the whole saturated-is-bad-monounsaturated-is-good-high-fat-is-bad-lowfat-is-good-eat-lots-of-grains-and-complex-carbs for a lot of years. I mean big time. I have my own grain grinder to make my own flour to prove it!! And cases of canola oil. And I also have the extra 40 pounds or so to prove it. Up until about 6 months ago, I was busy eating my "healthy" diet, and
unwittingly aiming myself right at type 2 diabetes.

I have been studying the work of Weston A. Price, who did research on long-lived people, and who came to the conclusion that many of the societies that lived the longest had diets with huge percentages of fat and very low grain consumption. Most of these cultures ate a lot of fish (here's where the omega fats come in) and huge amounts of coconut and other tropical, saturated oils!!

Every cell membrane in the body is made up of phospholipids, and phospholipids are made up of one saturated fatty acid and one unsaturated fatty acid!! I was floored. People on the coconut oil list
that I am on have had their kids lose behavior problems, cleared up excema, boosted their thyroid- all from eating a few tablespoons of coconut oil every day instead of the equivalent of polyunsaturated oil. Yikes - talk about having been barking up the wrong tree for a lot of years!! And
furthermore, we have enzymes specifically to take saturated fats and convert them to unsaturated fats.

Along with the wrong flavors of fats, this whole high-carbohydrate thing is on the chopping block for me. People who have been following moderate programs such as the Zone, the Schwartzbein diet, Protein Power, or even more radical programs like the Atkins diet, are dropping pounds, triglycerides, cholesterol numbers - exactly the opposite of what has been the mainstream mantra. This one is right up there with vaccines and "it's genetic, you can't do anything, just take them home and love them." It is dogma, it is substantiated with flimsy research, and I am finding that I need to totally reeducate myself on diet. For example, they have lumped trans-fats in with saturated fats when coming to the conclusion that saturated fats are bad for you. Well, folks, they are not the same thing. If you look at cultures that eat a lot of saturated fat, they seem to be quite healthy, thank you very much. However the poor coconut farmer in the Phillipines does not have the same political clout as Archer-Daniels-Midland and their seed-oil business, so they get tossed out with false propaganda.

I am learning that insulin, which is boosted by carbohydrate intake, is the real culprit, not the fat. My big complaint with the Atkins diet is that being in a state of constant ketosis is also not good for you. The body is highly acid in that state, which is not good, and it is burning the fuel that the body uses during starvation. The other more moderate regimes are aimed at controlling insulin, not going into ketosis. They focus on removing grains and sugar, and eating lots of vegetables and clean proteins.

OK, back to business. Another subject, which fortunately shouldn't tax too many more brain cells but is important in understanding fat metabolism is the length. You have perhaps heard about short-chain fatty acids, medium-chain fatty acids and long-chain fatty acids? Not surprisingly, the distinction between these is how many carbons are in the carbon chain. Short chain fatty acids have 8 or less carbons. Medium chain fatty acids have between 9 and 13 and Long chain fatty acids have 14 or more. The significance is in how these are digested and what end products they make. Short and medium chain fats are absorbed and digested much more readily than long chain fats. Long chain fats are basically herded into fat droplets, and transported through an entirely different mechanism. Medium chain fats are very easy for the body to turn into energy, so many people who start eating coconut oil, which is very heavy in lauric acid, a medium chain fat, find that they get a huge burst of energy. Long chain fatty acids, whether saturated or not, are what the body uses as building blocks for most other things, such as cell membranes, prostaglandins, hormones and cholesterol.

Here is where the omega 6 versus omega 3 hits the road. One of the big issues in Down syndrome, and probably what that dietician was talking about in terms of the metabolic nightmare, is that if you have too many of the omega 6 fats, they can be converted into inflammatory prostaglandins. The last thing we need is more inflammation going on in our kids bodies. Like anything else, the body is looking for a balance, and when the balance is off, such as in the standard American diet which is so high in trans fats and omega 6 oils, the body suffers.

Finally, and this is where I am doing my reading right now to try to understand the implications is the subject of lipid peroxidation. Remember our belly-pierced trans fat? Well, the other biker chicks that she hangs out with are oxidized unsaturated fats. Remember that fatty acids are carbons and hydrogens all along the chain until you get to the very end? Places that have double bonds in that chain are very susceptible to being oxidized by free radicals. (One of the reasons high hydrogen peroxide is so dangerous in our kids is that it oxidizes the fats in the cell, including the membrane.) As I understand it from my organic chemistry, oxidation of a hydrocarbon means converting a double bond on a carbon to an alcohol (an -OH on the carbon where the second bond used to be) and perhaps further to a ketone (the other hydrogen on the carbon taking a hike with the hydrogen on the -OH and forming a double bond to the oxygen.) So, is this what an oxidized lipid looks like? Regardless, there is no enzyme that's going to recognize these oxidized lipids. Talk about unsightly bumps and bulges!!

Let me now point you to a chart that I have found to be very helpful in terms of dietary fat. http://optimalhealth.cia.com.au/OilAnalysis.gif. To help make sense of it, in the first column, is the name of the fat, and then there is the number of carbons followed by a : followed by the number of
double bonds. So, butyric acid would have 4 carbons, with zero double bonds (i.e. it's saturated.) Further down you find Omega 6 LA 18:2 Poly which means omega 6 linoleic acid, 18 carbons long, 2 double bonds (therefore polyunsaturated). The rest of the chart shows the analysis of various
dietary oils according to their fatty acid content. I believe he included cold-pressed, organic, unhydrogenated oils. That is not necessarily what is out there on the shelves in the stores, so be careful out there!!

Later in the chart, he gives the peroxidation index. It's as simple as this- the more unsaturated an oil, the more likely it is to become oxidized (aka go rancid!). That's why flax oil was removed from the Nutrivene protocol a few years ago and replaced with the Efalex in the first place. Dr. Dave did an analysis in his lab and found that most bottled flax oil was already pretty rancid when it got to the health food store!!

At this point in my analysis of fats, I have come to the conclusion that for dietary purposes, I need to be using butter (organic, grass-fed for sure, and we are using raw butter which has an even higher butyric acid content), olive oil and virgin coconut oil. The reasons I have come to those conclusions is to maximize the availability of the short- and medium-chain fatty acids that are just not available from other sources, and to minimize our dietary consumption of omega-6 fats. I am supplementing this with Cod Liver Oil (unfortunately not included in his chart!) for DHA and fat-soluble vitamins, fresh-ground flax seed for linolenic acid, and fish oil for the longer chain omega 3’s. According to Dr. Mercola, the fish oil sold at Costco, the Kirkland brand, is the best stuff because it is sold so quickly that it is always fresh. It's quite reasonably priced too.

Now for the question that I have really been struggling with in terms of Down syndrome. Since our kids have a very high level of oxidative stress going on in their bodies almost perpetually, what can I do to keep the good polyunsaturated oils from being attacked once they hit the body? I am certainly giving a hefty dose of antioxidants in the Nutrivene and other supplements, but how quickly are these fats absorbed and tucked away safely into end products which are safer from free radicals? I don't know the answer to that. I guess my concern is that given the DS biochemistry, can we assume that supplementing these oils is doing the trick?

Why is Curcumin Being Used in DS?

2011-12-12T07:00:00.000-08:00

A few months ago there was some discussion on the DSTNI Yahoo! group regarding Curcumin and why it is being used in DS. For some, this may seem obvious, but it's not for everyone. So, I thought I would add to what I had written in the email a few months ago, since I think it'll be helpful.

Some were questioning why Curcumin was being studied at all. Turmeric (the spice which Curcumin is from) is used in India and has been for a very long time. Because of the health benefits that it has shown in use in India, there were questions as to why it was being studied.

Curcumin is not being studied because of what it does in India alone. It’s been studied for many years now. Researchers have seen things in vitro, in vivo and in mice on how Curcumin (the active ingredient of the spice, Turmeric) functions. And how it has amazing properties of: neuroprotection, neurogenesis, synaptogenesis, anti-cancer, anti-inflammatory, increasing GSH levels, improving memory, inhibiting apoptosis, breaking up amyloid beta plaques & tangles, and much more.

Some researchers (many of them at UCLA’s Alzheimer's research center) have decided to take the research one step further and specifically look at it for AD. Because other studies have shown that taking only Turmeric or just plain ole Curcumin does not cross the blood-brain-barrier and is not very readily absorbed, UCLA found the most bioavailable form of Curcumin. They then took that bioavailable, somewhat easily absorbed form, and targeted it even more to get the absolute most bioavailble form of Curcumin. They then bound it to a fatty acid so that it’ll be easier to cross the BBB. This was then tested and found to actually cross the BBB and be able to do things in the brain which are helpful for AD (and many other things).

This is far different than just taking Turmeric and using it because people in India use it. Sure, the health benefits that people see in Indians using it, I'm sure has helped the research scene. But, it's not the reason that Curcumin has been studied so much.

So, because Curcumin has shown good results in vitro, in vivo and in animal studies of various health issues, including Alzheimer's disease, that's why it is now used for people with DS. There is a 50% higher incidence of AD in Down syndrome, so it's only natural that something that has shown so much promise in AD would be helpful for people with DS.

It would be great if there was a study done on Curcumin in people with DS, but that has not happened yet. Dr. Leichtman, with the help of Verdue Sciences, is looking into trying to get a study done using LC in people with DS, but it takes some time.

Boosting The Immune System & Dealing with Colds

2011-12-11T14:09:00.001-08:00

Since it's the flu season time of year, I thought I'd share some tips that can help boost the immune system.

We keep these supplements on hand for boosting the immunity when the flu is going around:

-Echinacea
-Vitamin C
-Vitamin A
-Vitamin D
-Vitamin E
-Zinc
-Glutathione

We give Vitamin D to O every day and in the winter the rest of the kiddos normally get Vitamin D on a regular basis as well. Whenever there is a sickness going around, we increase the amount of Vitamin D that O takes from his regular 2000IU/day to 4000-6000IU/day. It makes a big difference in helping him get over the cold.

For some kids, the flu can turn into a bad chest cold, bronchitis or pneumonia. If the cold has turned into a bad chest cold, we will use some of these supplements to help combat the congestion:

-Ridgecrest Herbals ClearLungs (red label)
-Essential Oils, particularly Mom's Remedy.

ClearLungs has made a massive difference for all of our kids if the cold is started to make them real congested. It helps with the congested lungs very, very well.

Mom's Remedy can be used on the bottom of the feet or on the chest like VapoRub would be used. There are also some other essential oils that we have used to help boost the immune system. Heritage Essential Oils has several good oils.

Hopefully these ideas will help some :)!

Wordless Wednesday: Winter Frost

2011-12-07T06:01:00.001-08:00

Afraid of Change?

2011-12-06T12:20:00.001-08:00

Anyone who is involved in Down syndrome and targeted nutritional intervention will likely know that it's a very "hot topic" on many online message boards. Just asking the question, "What does everyone think about TNI or Nutrivene?" will open up a huge can of worms.

I found this out the hard way when we first discovered Nutrivene. Little did I know that it would be such a debated topic when I asked everyone's opinions on this matter. Although, it is much calmer than it was a few years ago on many online message forums, it's still a very passionate topic. And if you're on the "wrong" (I use that term loosely) message board it can bring quite a heated discussion.

For years I have been puzzled as to why this is such a huge debate. I understand people discussing this, weighing out the pros and cons, sharing experiences, etc. But, there are certain statements that are made frequently, which have always left me in confusion. These statements are made when the topic regarding the use of any supplement or TNI comes up on most (not all!) online message boards and email forums.

The statements are always along the lines of:

-I accept my child for who they are and I don't want to do anything to change that

-I don't want to change my child

-I don't want to take away the 'Down Syndrome' from my child

These statements puzzle me.

From the beginning of us looking into the use of TNI for O, it was never because we wanted to change him or remove the Down Syndrome. He had some serious health concerns and we needed something to help him be a strong, healthy boy.

When people say these things, I wonder why they would say something like this, unless they just do not fully understand what the use of TNI is for. And, it's obvious, from statements like these, that they don't understand. Because, if they did understand, they wouldn't say those things.

It almost seems as if they are afraid that using something like TNI, that it will change their child for who they are. It makes me wonder about the use of other early interventions.

If someone is so concerned about changing their child, why do people do Early Intervention - Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy, etc? It's the same thing that TNI does. It could be called Nutritional Therapy. Because, that's what it is. It's helping their body and it's nutritional needs. Just as Physical therapy is helping their body in it's physical needs. Or, Occupational Theapy is helping their body in it's fine motor needs. Or, Speech Therapy is helping their body in it's speech production needs. Or, Feeding Therapy is helping their body in it's eating needs.

We fully accept O for who he is with his extra chromosome. We are not trying to remove the 'Down Syndrome' or the extra chromosome from him.

What we are doing, is helping O's body deal with the biochemical changes that the extra chromosome causes. This is not speculation. It's a fact that there are 250+ additional genes in the body of a person with Down syndrome. Some of these genes and proteins are overexpressed in DS and they cause all sorts of harm to the biochemical, medical and nutritional needs of a someone with DS.

I don't want O to develop early Alzheimer's. I don't want O to develop dementia in his 20's. I don't want O to get leukemia. I don't want O to have thyroid problems. I don't want O to have nutritional deficiencies. And the list goes on.

This change is what we are going for. Change that will help O be a strong, healthy, cognitively aware person with Down syndrome. And by God's grace, he has shown us TNI that has the potential to do just that. God has used that to help him and I trust He will continue to use it to help O.

That is the change we're looking for. But, it doesn't remove the fact that O was born with Down syndrome and that, we are not trying to change. If there was a way to fully remove the harmful effects of the extra chromosome, I would do it. But, at this point, that is not a reality. What is a reality, is to use TNI and various other nutritional supplements to help counteract some of the effects of the 21st chromosome.

Larix & Glyconutrients

2011-12-04T07:00:00.000-08:00

There was some recent discussion on the Einstein-Syndrome list regarding the use of Glyconutrients. I have posted about Glyconutrients before (see here) and how I feel about their use. Personally, I feel Glyconutrients are not beneficial.

Some people were sharing that instead of using Mannatech/Ambrotose, they just used Larix (also known as Larch Arabinogalactan). I thought I would look into Larix.

First, what is Larix? I found a helpful PDF about Larch Arabinogalactan,

Larch arabinogalactan is a polysaccharide powder derived from the wood of the larch tree
(Larix species) and comprised of approximately 98 percent arabinogalactan.

A polysaccharide is a carbohydrate/sugar, which the body can have a hard time digesting.

Larch is reported to help the immune system, is a good source of fiber, help with cancer and several other health benefits. I have found very little to support this. It is FDA approved as a food additive and as dietary fiber.

The above PDF states,

Human studies on the pharmacokinetics of larch arabinogalactan are few and the amount absorbed following an oral dose remains unclear. Animal studies indicate that intravenous injection of purified larch arabinogalactan results in 52.5 percent of the dose being present in the liver and 30 percent in the urine 90 minutes after dosing.

I was not able to find any of these studies that would show the usefulness or helpfulness of Larch. An article on this site gives a little information regarding some studies,

In one laboratory study, researchers at the University of Minnesota concluded that larch arabinogalactan is a safe source of dietary fiber and may be effective in boosting the immune system. The research was sponsored, however, by the company that owns the patent to the extract. Another laboratory study done in Germany found that arabinogalactan from the Western larch stimulated the action of a type of white blood cell called natural killer cells.

More recently, a brief animal study looked at white blood cells that serve important immune functions. The researchers found that arabinogalactan actually seemed to suppress production of some of these white blood cells, seeming to contradict the results of the earlier study. With daily injections of arabinogalactan, the mice had fewer white blood cells in the bone marrow after a week. Levels of natural killer cells (a type of white blood cell) went back to normal after 2 weeks of injections. Immune cells in the spleen were mostly present in normal numbers, although the levels of some types of immune cells were lower in the spleen even when they were normal in the bone marrow. Further studies are necessary to determine whether arabinogalactan helps human immune function.

A 2004 human study compared larch arabinogalactan with rice starch to determine whether it improved cholesterol, triglycerides, and sugar levels. At the end of 6 months, there were no differences between the group that received rice starch and the group that received arabinogalactan.

Little scientific information is available on the effects of larch resin mixtures on human skin. It may have antiseptic, or germ-killing, properties.

Overall, I did not read anything that would encourage me to use Larch. There are a lot of other nutritional supplements which are proven to work well in boosting the immune system and they are not a sugar and carbohydrate. That's my biggest beef with using the Glyconutrients. Why supplement with something that has the potential to be pro-oxidant?

The Learning Program

2011-12-03T07:20:00.001-08:00

I found out about this program on Twitter a couple months ago and their approach sounds interesting and quite good. Basically this program uses a lot of hands-on approaches to reading, math, etc. Most of us involved in the DS world know that children with DS are very visual learners.

To share a little more information about them:

The Learning Program Boston (LPB) is an early educational literacy and numeracy program for children with Down syndrome. An affiliate-partner of the Learning Program™, a nationally-recognized model for parent-focused intervention developed by the Down Syndrome Foundation (Orange County, CA), the program is based on evidenced-based approaches to teaching children with Down syndrome established by Down Syndrome Education (UK), world-recognized leaders in cognitive research for children with Down syndrome. LPB is implemented in the Greater Boston area by the 3-21 Foundation, a 501(c)3 non-profit organization.

Trienza Enzymes vs Nutrivene Enzymes

2011-12-01T06:30:00.000-08:00

Some children with Down syndrome are greatly helped by the addition of enzymes to their diet, in supplementation form. International Nutrition has a Nutrivene Daily Enzyme which is on their recommended protocol.

We have never used the Daily Enzyme, because O has struggled with reflux over the years. Some children have their reflux get better when given certain enzymes, while it may trigger worse reflux for others.

Enzymes can also be helpful to the child if they have trouble digesting certain supplements, have constipation, or just have slow moving bowels.

There are a myriad of enzymes out there. Two that are commonly used by families on the Einstein-Syndrome list (ES) are the Nutrivene Daily Enzyme and the TriEnza by Houston Enzymes. One mom on the ES list shared what they had used for their son and a brief comparison between the two enzymes, as she used both of them.

So, here's a guest post from Jayme O.:

This is by no means an exhaustive comparison, so you will have to do your own research, but here are the basics.

The information about Trienza can be found at this link.

From what I can see, Trienza is a combination of three of Houston Lab's most popular enzyme combination formulas; No Fenol, Zyme Prime, and AFP-Peptizyde. It is a full spectrum, plant based enzyme formula with enzymes that break down fats, proteins, carbohydrates, phenols, and gluten/casein/lactose.

The information about Nutrivene's enzyme formula can be found here.

Nutrivene-D Daily Enzyme contains Amylase (breaks down carbohydrates), Cellulase (breaks down fibers found in fruits and vegetables), Lactase (breaks down milk sugar), and Lipase (aids in fat digestion). It does not contain any enzymes that break down protein. The way they measure their formula is not comparable with the way they measure the enzymes in the Trienza.

They use different forms of measuring, so it is hard to compare the formulas.

In my experience, I first used the Nutrivene enzymes. At this time Vision was in a constant state of being constipated and really struggled to have a bowel movement. They were often hard and painful to pass.

Then, when I discovered that the Nutrivene enzymes had rice flour in them (something that Vision is allergic to), I switched to a broad spectrum, plant based enzyme formula from Source Naturals. It seemed to help some with digestion and with helping the constipation, but it certainly didn't stop the constipation issues we were having. It was when I switched to Trienza that things got vastly better for Vision in digesting his food and having softer, easier bowel movements. It is still not perfect for him in the bowel movement area, but it is much improved. I will keep using the Trienza.

Wordless Wednesday: Helping In The Kitchen

2011-11-30T06:30:00.000-08:00

Do Insurances Cover Supplements?

2011-11-29T12:25:00.001-08:00

The expense of the many supplements and drugs which people have their child with Down syndrome on, comes up often. Yes, it's not cheap to take Longvida or Nutrivene, or the many other supplements someone may have their child take.

But, it's very worth it!

It's not common for insurances to not be willing to cover Nutrivene or any other supplement. Nutrivene seems to come up the most often with the question "can this be covered by insurance?"

There have been some families who have been able to get their insurance to cover it. I'm not sure how they were able to, but there are a few options that you could try:

-Have your doctor write a prescription for Nutrivene. A prescription is not necessary for your child to take Nutrivene, but this may be one way your doctor could get it covered.

-You could try submitting it to an insurance as a "therapy." Because, it is technically "nutritional therapy."

-In some cases, you may be able to submit it to medicare or your child's insurance as another sort of therapy, depending on how it has helped your child.

We have not tried to get it covered by insurance, since it seems like it would be a battle to try to have that done. We've been buying Nutrivene-D for almost 7 years now and God continues to provide!

If anyone has anymore information on how to get insurance or medicare to cover your child's nutritional supplementation, I'd be interested to hear it!

"I'm Sorry"

2011-11-28T07:01:00.001-08:00

When someone hears that you have a child with Down syndrome, sometimes they respond with an "I'm Sorry."

There's nothing to be sorry about when you find out someone has a child with DS. Nothing. Sorry that they have a child with an extra chromosome? It's not that big of a deal. Sure, there are challenges that come along with it, but it's not a problem to be sorry about.

Our typical response to this is, "We're sorry everyone doesn't have a kid with Down syndrome."

And that is the truth. We often say this, even around our home, because O is a big blessing to our family. He makes us laugh. He's so happy. It would be good if more people had someone like that in their life.

I thought of this when I was getting O ready for the bed the other night. He was getting his Pajamas on (which are his favorite thing to wear lately :)) and he put them on all by himself. I layed them out for him so that it's very obvious where he needed to put his legs, his arms, etc. After he got them on, he threw his arms up in the air in excitement and jumped up and down with laughter. He was thrilled because he did it all by himself.

Then he put his thumb up and said "O cool" and ran and gave me a big hug.

He was excited over such a little thing. But, it really makes your day when you have someone who is excited about life. Especially the small things.

When he did this, I thought, how could someone say they're sorry we have a child like this?

Don't be sorry for us. We're glad that we have someone with Down syndrome in our life.

Cyber Monday Sale!

2011-11-28T01:00:00.000-08:00

The publishing company which our book, Down Syndrome: What You CAN Do, is published through is having a Cyber Monday Sale.

Use this coupon code at checkout: CYBERMONDAY305 and receive 30% off.

You can go to LuLu to order the book at this link: http://www.lulu.com/spotlight/gotdownsyndrome

If you order the printed book at $22.73, take 30% off, you can get the book for $15! That's quite a deal on a 589 page book :).

Triple Cute Blog Award

2011-11-27T15:02:00.000-08:00

My sister over at Hanunyah's Sweet Creations, received the Tripe Cute Blog Award and passed it on. The only rule is to pass it onto 7 other bloggers.

It's a hard decision of who to pass it on to! But, here goes:

Praying for Parker
Life With My Special K's
Down Syndrome: A Day to Day Guide
Einstein-Syndrome
Kevin&Amanda.com

I couldn't quite get 7 bloggers to pass it onto, so 5 will have to do!

Gluten-Free & Dairy-Free Thanksgiving!

2011-11-26T08:58:00.001-08:00

We had quite the Thanksgiving get together on Thursday. Lots of food. Lots of family & friends. Lots of fun.

One requirement we had for those who contributed to the meal was that everything had to be gluten-free and (cow milk) dairy-free. It was quite easy to do and very delicious! So, here are a lot of pictures from the day.

We also had an extra challenge in the food department - we had to make a lot of dishes GAPS diet approved, since my brother, dad, sister, aunt, cousin, and a couple friends are on this diet. This wasn't too hard, since all the meat was homegrown meat, and we make everything from scratch. It was just some of the desserts, sweet potatoes, mashed potatoes, etc, that the GAPS diet folks can't eat.

One picture of the big "Happy Thanksgiving" sign we had hanging!

Veggie platters, deviled eggs (made with GAPS friendly mayonnaise), applesauce (also GAPS friendly)

Salad & toppings

Homemade Thousand Island dressing

Fruit salad with 9 different kinds of fruit

Rutabaga

Mashed potatoes and gravy

Green beans with bacon & almonds (the bacon was homegrown & "homesmoked" - very yummy!). Also GAPS friendly.

Meatballs (GAPS friendly)

Strawberry Sauce to put on GAPS Peanut Butter/Squash pancakes

A squash dish for GAPS.

Spaghetti Squash stir fry (also GAPS friendly)

Sweet potatoes with Marshmallows

Cornbread stuffing

Pumpkin Chocolate Chip Muffins, Kefir Biscuits & Apple Muffins

Pickled Beets, Pickled Asparagus, Olives & Pickled Corn

And then the drink counter. We didn't want any soda, since we aren't too fond of all the high fructose corn syrup in the soda, so we made homemade sparkling juice drinks. Sparkling Limeade (some that was both GAPS friendly and then a non-GAPS limeade, since it was made with sugar), Sparkling Apple, Sparkling Cranberry-Peach, Ginger Tea and Peppermint Tea.

We also had Jello dishes (with homemade marshmallows).

And of course, the standard Cranberry Sauce.

Popcorn balls

The meat was all roasted in a deep pit. We had to finish it off in the ovens. But, there was Ham, Deer Roast, Duck & Chicken.

And finally the desserts:

Pumpkin Pies (some GAPS friendly), Apple Pie, Frozen Peanut Butter Pie (GAPS friendly), Cranberry Oatmeal Cookies, Oatmeal Cookie Sandwiches, Whoopie Pies, Peanut Butter Truffles, Chocolate Chip Cookies, Fudge, and Double Chocolate Chip Cookies.

There was so much food that was all so good! We're very blessed! Hope your Thanksgiving was good!

Dr. Turkel's Book, Part 3: His Practice & Results

2011-11-25T06:30:00.000-08:00

You can view the first two posts covering Dr. Turkel's book here and here.

In this third post, I am going to quote a lot out of Dr. Turkel's book to show how his practice operated.

On page 12-13 of his book he writes,

Before a patient's first examination, records are sent to my office. These records include the birth and medical histories, chromosome reports and a karyogram, hospital and medical records, school and I.Q. reports, T3, T4 TSH (thyroid) studies, and 5 X 7 photographs. In this way, I obtain background information on the child's condition before the examination and can prepare the medication. Following a thorough examination of all organ systems, and including photographs of the characteristics of the syndrome such as the elevated palate, palm prints, and assessment of the patients social or mental age, specific ways to help that particular child reach his potential are discussed. Next, X-rays are taken at an independent clinic. Any necessary dosage adjustments or supplements are prepared at this time.

A patient's first appointment includes an overview of Down syndrome. The chromosomal basis of the disorder is reviewed, together with implications of the excessive gene products and how their presence interferes with their child's development. Parents observe how the accumulations manifest themselves in their own child: puffiness around the eyes, chin line, neck, abdomen; the enlarged tongue, wide gum line; skeletal abnormalities seen on X-rays. I also demonstrate improvements seen in other patients. If treatment is ended too soon, new accumulations block further development.

This describes how Dr. Turkel's practice functioned. In this diagram, Dr. Turkel explains what he believed the "Treatment with the 'U' Series" did. There is a diagram on page 19 of the book that shows what Dr. Turkel believed the U Series did. I didn't get it scanned in time for this post.

On Page 28, Dr. Turkel writes about the improvements he typically saw with the "U Series":

The features of Down syndrome that usually improve are those associated with metabolic accumulations, especially fluid retention.

Improvements that occur most of the time:

GENERAL HEALTH

Enlarged Heart

Pulmonary congestion and increased lung capacity

SKELETAL DEVELOPMENT

Hip sockets

Bone age - general growth

Reduced hypermotility of joints

FLUID REMOVAL

Reduction of enlarged tongue and fissures

Widening of palate

Improvement of facial expression and apperance

Reduced abdominal protrusion

OTHER

Development of nasal bridge with reduction of epicanthal folds.

Reduction of fine-lens opacities and improvement of vision

EDUCABILITY

Increased attention span

Improvements that occur some of the time

SIGNIFICANT IMPROVEMENT IN I.Q.

SKELETAL

Reduction of scoliosis (with foot support)

Improvements that occur rarely

SKELETAL

Single-palm line divides

Incurved fifth fingers straighten

While some may laugh at some of the improvements Dr. Turkel reports, this is what he believed he saw at the time. His U Series helped many families back in the days when there was little to no hope given for people with Down Syndrome.

Even people in other countries raved about what the U-Series did for them. And, in some reports, you can see that the U Series, was something extremely unconventional at the time. And when it did help patients, people were amazed.

On pages 130-131 Dr. Turkel writes about the Japanese use of the U-Series,

In 1964, I renewed my acquaintance with Dr. Iida at a convention of Military Surgeons in Washington, D.C. Dr. Iida told me that complications of Down syndrome were claiming the lives of 90% of these patients prior to adolescence, and that he wanted to learn how to compound the "U" series correctly.

We discussed the formulation and manufacture of the "U" Series. For the following ten years, although I did not know it, the Japanese used and studied the "U" Series, in somewhat modified form (MD Series) because of the unavailability of several of the components.

In 1974, I received the following letter:

"I am very pleased to tell you that thanks to your kind approval we have been able to prescribe the medicine to Japanese children in several thousand at national or university hospitals amounting to about 60 in total throughout Japan, thus resulting in improvement of their health greatly."

On September 12, 1974, Dr. Iida and Dr. Takatsune Koishi, a biochemist and president of Kobato-Kai, the Parents' Association, visited Detroit to thank and inform me of the results.

The mortality rate prior to adolescence had been reduced from 90% to 1%. Since then at least 1000 additional children have been treated at 80 hospitals. While here, Drs. Iida and Koishi examined my results. Observing that the physical improvements were greater with the "U" Series than the MD Series, they decided to import it, preferably from the United States, as soon as possible.

The Japanese had great results, as is stated above with an altered version of the U-Series as well. They ended up trying to import the U-Series into Japan, but the FDA refused. I will go into the details about the FDA and the U-Series in the next post, Lord willing.

21 Things I'm Thankful For...

2011-11-24T05:00:00.000-08:00

First off, Happy Thanksgiving (at least to those readers who are in the US :))!

Since it's Thanksgiving today, I thought I would share 21 things I'm thankful for about O.

I'm thankful....

...That he's my brother
...For all the progress he has made through the years
...That he has Down Syndrome
...For his laugh
...For his smile
...For his hugs & kisses
...That he likes to be cozy & cuddly still
...That he is able to read (even if it's just a few words right now)
...That he speaks in sentences (even if it's not clear to everyone)
...That he can swallow pills
...For how he says "Pajamas"...."Fafafas"
...For the small things in life (like all of the family holding hands while walking that he gets so thrilled about)
...That he likes to clean
...For how he jumps up & down and claps his hands when he's excited
...That God has used the vitamins O takes to help him excel
...That he understands so much
...For how he says "I love you" (I uv woo)
...That he was born into such a large family (it helps him so much!)
...For his health
...That he is potty trained
...That he says Mom, Mommy, Me, My and Molly (they've been such a challenge for him to learn!)

Most of all, I'm thankful that....

God has blessed our family with a child with Down Syndrome.

Wordless Wednesday: Gluten Free Yummy-ness!

2011-11-23T06:30:00.000-08:00

For recipes, check out my sister's blog.

Gluten Free Pumpkin Chocolate Chip Muffins

2011-11-22T06:00:00.000-08:00

We have had a lot of pumpkin lately, so we've had to make a lot of pumpkin dishes (to use up the pumpkin that hasn't been put in the freezer!).

A couple weeks ago I made these Pumpkin Chocolate Chip Muffins and they were a hit!

Gluten-Free Pumpkin Chocolate Chip Muffins
(remember there is a printer-friendly option at the bottom of every blog post)
Yield: 42 regular muffins, 12 miniature muffins

Ingredients:
3 cups rice flour (or any gluten-free flour)
2 cups brown sugar
1 1/2 teaspoons baking powder
1 1/2 teaspoons ground cinnamon
1 teaspoon salt
1/2 teaspoon baking soda
1/2 teaspoon ground nutmeg
4 eggs
2 cups pumpkin
1/2 cup oil
1 cup chocolate chips
splash of vanilla

Directions:
1. In a mixing bowl combine the dry ingredients.
2. After mixing the dry ingredients together, add all the wet ingredients.
3. Add the chocolate chips and make sure it is all mixed together.

4. Coat the muffin pans with liners or oil/cooking spray. Fill 2/3 full with batter.
5. Bake at 400 degrees for 15-20 minutes or until a toothpick inserted comes out clean.
6. Remove from oven and let cool.

Enjoy!

Is the Supplement Causing This Problem?

2011-11-21T06:30:00.000-08:00

A few months ago there was some discussion of the effects of Longvida Curcumin on the Einstein Syndrome list. There were some statements made where people thought Longvida had made their child sick more often, not sleep, etc.

Because of the research I have done, I had to chime in with some additional information. Whenever you give any supplement, you are going to have to watch for changes. But, to say a change that is happening 3-6 months after the supplement was started is because of such and such supplement, is not necessarily true. There are so many variables in life, that after so many months, you may not be able to say what issue is being caused by which supplement.

As with ANY supplement, not every child will be able to handle it. Or, maybe they can only handle certain amounts of it. Or, maybe they need a digestive enzyme to help them absorb it better. There's a myriad of reasons why a child may not be able to tolerate a supplement.

Personally, if my brother was getting sick more often, I wouldn't be looking at his supplementss as potentially causing the problem. I would look at what his supplements were lacking.

In other words, does he need more vitamin D? Are his zinc & iron levels good, etc? Maybe he needs more Glutathione to help his lungs/airway. The list of things to look at is huge!

Is there a certain vitamin interacting with another one to mess something up? Maybe I should split up the time when he takes certain vitamins.

From what I know, there is nothing in LC or any sort of TNI that would weaken a child's immune system. If someone can find otherwise, I'd be glad to hear it :). In fact, I have heard just the opposite - that Curcumin strengthens the child's immune system.

As far as negatively affected sleep from a supplement, I would look at a few things.

-What time of day does he take the certain vitamin?
-Can he not tolerate vitamins after a certain time of day?
-Is it really the vitamin or is there something else in effect?
-Is he growing or teething?
-Does he have any allergies?
-Is he too warm or too cold when sleeping, etc?

Why is Glutathione low when Cysteine is high?

2011-11-20T06:30:00.000-08:00

A question that I have thought many times, and was also recently asked is, "Why is Glutathione low when Cysteine (a component which makes up Glutathione) is in excess in DS?"

It's a good question. And a hard one at that!

Bottom line - No one really understands it all the way. But, this is what is understood:

There is excess cysteine due to the overexpressed CBS gene. Then there is also the overexpressed SOD1 gene causing a 50% increase in oxidative stress/free radicals. This increase in oxidative stress seems to cause a decrease in Glutathione, as there are not enough antioxidants (Glutathione being one of them) to match the amount of oxidative stress and free radicals which are present.

One of the best studies on the topic is, Homocysteine Metabolism in Children with Down Syndrome: In Vitro Modulation. One quote from the abstract says,

Plasma levels of cystathionine and cysteine were significantly increased, consistent with an increase in CBS activity. Plasma glutathione levels were significantly reduced in the children with DS and may reflect an increase in oxidative stress due to the overexpression of the superoxide dismutase gene, also located on chromosome 21.

Another good article on this topic is Steven Fowkes article from CERI, Antioxidant Intervention in Down's Syndrome. This article is a few years old (written in 1998), but it is still interesting.

Study on Impaired Methyl Cycle in DS

2011-11-19T06:30:00.000-08:00

I came across this study the other day when I was looking up some studies for someone who had emailed me.

As most of us who are very involved in DS know, there is a big methylation problem in DS. This is due to the overexpression of the CBS gene (as the abstract below states).

Some children with DS are unable to tolerate "methyl donors", which are certain supplements, or even food sources. To try to help "normalize" the effects of the overexpressed gene, we supplement with extra TMG, and Methylcobalamin B12. It would be good to supplement with extra Folinic Acid as well, but my brother is one of those who cannot handle certain methyl donors. He is able to take some (like TMG & MeB12), but not others.

If you want to know more about the whole methylation cycle, a good book is Methyl Magic by Craig Cooney.

Anyways, onto the study,

Impairment of methyl cycle affects mitochondrial methyl availability and glutathione level in Down's syndrome.

Infantino V, Castegna A, Iacobazzi F, Spera I, Scala I, Andria G, Iacobazzi V.
Department of Chemistry, University of Basilicata, 85100 Potenza, Italy.
Mol Genet Metab. 2011 Mar;102(3):378-82. Epub 2010 Dec 9.

Abstract

In Down's syndrome there is evidence that increased gene expression coding for specific cystathionine beta-synthase translates directly into biochemical aberrations, which result in a biochemical and metabolic imbalance of the methyl status. This event is destined to impact mitochondrial function since methylation is a necessary event in mitochondria and relies on the availability and uptake of the methyl donor S-adenosylmethionine. Indeed mitochondrial dysfunctions have been widely described in Down's syndrome, but they have never been correlated to a possible mitochondrial methyl unbalance. In the present study we find that the mitochondrial levels of S-adenosylmethionine are reduced in Down's syndrome compared to control cells demonstrating the effect of the methyl unbalance on mitochondria. The possible role of methylation in mitochondria is discussed and some preliminary results on a possible methylation target are presented.

Supplementing with S.O.D - Is it Good or Bad?

2011-11-18T06:30:00.000-08:00

One of my blog readers left a comment on a post mentioning that they give their daughter S.O.D (SuperOxide Dismutase) as a supplement. In the meantime, I have had email correspondance with them and discussed this topic, but I thought it would be helpful to share here as well.

SuperOxide Dismutase itself is sold as a vitamin supplement by a lot of companies. In and of itself, SOD is not bad. It is a powerful antioxidant. But, as with almost anything, too much SOD, causes lots of damage.

The gene for SOD is on the 21st chromosome and is 50% overexpressed in Down Syndrome because of the triplicated chromosome 21.

One example of the increased SOD can be seen in the study, Increased superoxide dismutase and Down's syndrome,

The enzyme superoxide dismutase (SOD) is a constitutive enzyme coded by a gene located in Chromosome 21 (21q22.1). Thus, the tissues from patients with trisomy 21 contain 50% more SOD activity.

This triplication causes an increase in the hydroxyl radical, which causes free radicals. Free radicals then turn into oxidative stress. Oxidative stress causes apoptosis (programmed cell death).

Because of this, I would not supplement with S.O.D. because it IS in excess in DS. And the excessive amounts are not helping people with DS, but actually causing many problems.

In Down Syndrome there are not enough antioxidants to combat the increase in oxidative stress, because the antioxidants are low. Zinc is low in DS, because of the overexpressed SOD gene. Glutathione is low because of the overexpressed Glutathione Peroxidase gene.

There are so many other good antioxidants that you can give people with DS, such as Zinc, Vitamin E, Glutathione, Blueberry, Curcumin, Coenzyme Q10, etc, that I would not want to supplement with a source that is known to be overexpressed in DS.

Is the supplemental form of SOD the same as the form that is overexpressed in DS? I don't know, but personally, I wouldn’t want to risk it. SOD is overexpressed from the time the child is in the womb and throughout their whole life.

Confusion regarding Longvida Curcumin

2011-11-17T12:50:00.001-08:00

There were some posts on several DS email groups regarding some comments Teresa Cody had made about Longvida Curcumin at the Orlando CMF (Changing Minds Foundation) conference. It was said that she stated that you could take Curcumin with Phosphatidylcholine (PC) and get the same results as Longvida Curcumin (LC).

I emailed Teresa Cody and asked her about this, because saying something along those lines is very misleading. This is her response, which I thought was beneficial to share,

No, I did not say that. I said that Longvida combined curcumin with Phosphatidylcholine and that is what gets it across the BBB. I read it on their site a few years ago. Now instead of telling you what is in it, they say it is a proprietary mixture, or something like that. I was just telling everyone that they needed PC combined with the curcumin to make it work, so just taking curcumin by itself won't do the same thing. I use Longvida myself. I wasn't telling them not to use it. I'm not sure where they got that.

Longvida's site does explain the mechanism how LC works. But, I thought it would also be good to share just a little more information regarding this, in case others believe they may get the same result with just giving any Curcumin and PC.

A mom to a little girl with DS, Liora P., asked Verdue Sciences about this concern and the response is below. I have also linked to the PDF study which was sent that shows what is answered. .

Longvida is not a simple mixture of curcumin and phospholipids Longvida is made with a patent-pending technology (Solid-Lipid Curcumin Particle or SLCP) that is a precise complex which includes phospholipids and other lipids and factors that are critical to its bioavailability and activity.

During development of Longvida a curcumin-phospholipid mixture was tested and it was not much of an improvement. In fact, commercial versions of simple curcumin-phospholipid mixtures do not result in any free curcumin in blood, only the inactivated curcumin glucuronide which does not pass the BBB. Attached is a study which shows that.

Link to study: http://www.gotdownsyndrome.net/LCvsCurcuminPC.pdf

I hope this will clear up any confusion anyone might have.

Wordless Wednesday: Kitten Time

2011-11-16T07:55:00.001-08:00

Difficulty in Feeding a Baby with Down Syndrome

2011-11-13T14:38:00.001-08:00

I received an email a couple days ago from a mother who is having difficulty getting her baby to breastfeed and take the bottle. My mom shared our experience in getting O to nurse here, but I thought I'd share a little more.

We had a very challenging time getting my brother, O, to eat in the early days. He was in the NICU for 2 weeks after he was born and had a gavage tube for much of that time. We finally had the NG tube taken out and my mom went into the NICU every 2 hours to breastfeed him. It was a lot of hard work, but he eventually caught on. Here’s a few thoughts, so hopefully some of this may help:

-Have you gotten in touch with a La Leche Leauge consultant? They have all sorts of tips and info on breastfeeding a baby who is having a difficult time. They helped us A LOT with Osiyyah!

-Have you tried using Nipple Shields? I know it sounds funny, but they help a lot of moms who have babies with a difficult time breastfeeding. You can order them online and a La Leche League consultant should have some or know where to get some.

-Have you tried using a SNS - Supplemental Nursing System? It’s a bottle that has a small tube coming out of it. You put your milk or formula (my mom pumped and used her milk) in it and then tape the tube next to your nipple. So, when your baby is nursing, she will be getting whatever she can from you, but also getting extra from the SNS. It doesn’t come out real fast, so it shouldn’t choke her. You can also use the SNS on your finger or pacifier for her to just suck on.

-Have you tried the Haberman (SpecialNeeds) Feeder? This is used for babies who have difficulty with bottles and nursing.

-How do you hold her when you breastfeed her or bottle feed her? When my mom breastfed O she would have him in almost a 90 degree sitting angle. It seemed to help him get more down, easier and it wouldn’t drip out of his mouth.

-My mom also would have O's twin sister, Y, nurse until she had a let-down and then Y would get taken off and O would get put on. This milk is called the "hind milk", which is higher in nutrients anyways, but it was also easier for him to nurse because the milk was right there.

There's also a couple things to consider if you have a baby who doesn't want to nurse because they get tired quickly:

-How is the thyroid? A low thyroid (hypothyroidism) is very common in DS and it will cause sluggishness.

Does the baby have a heart condition at all? A heart condition will very often make a baby not want to eat much.

I know it’s very discouraging to see a baby who has little interest in nursing. I know it took a lot of work to get my brother going good on the breast. He had a bottle once, but we did not want him getting it much because we didn’t want him to get used to it. Once we did get him breastfeeding, he nursed until he was 2 years old.

Just keep trying and hopefully the baby will be able to do it well as you keep pushing her along!

To Wait For Research or Not?

2011-11-12T06:00:00.000-08:00

One very common thread that comes up frequently when any supplement is talked about for Down Syndrome is whether it has been researched specifically in people with DS. A placebo controlled clinical trial is almost always brought up.

I agree that it would be very nice if there was a clinical trial specifically for Nutrivene-D and people with Down Syndrome, Longvida Curcumin and people with Down Syndrome, etc. But, there is not.

There is a ton of research that supports the use of the nutrients in Nutrivene-D for people with DS. Personally, that's enough research for me. To see that such and such supplement helps make people with DS not deficient in it, I am going to give it.

That's why Nutrivene-D is here. Nutrivene-D follows the newest research for DS and also the feedback from families who use it and the formula is changed accordingly. New ingredients are added, the dosage of ingredients are changed, some ingredients are even taken out at times. Giving Nutrivene-D (NTV) saves a lot of time, and even money. Otherwise, someone may be giving a whole cupboard full of each individual component which is already in NTV. Some may have to do that, if their child is sensitive to various supplements, but NTV regular formula and custom formulas work for most people.

There is a massive amount of research on the use of Curcumin in patients with Alzheimer's Disease (AD) and all sorts of other health concerns. All you have to do with this, is the same as NTV. Put two-and-two together. When you do that, you realize that if this particular problem is present in DS, and also present in AD, and supplementation helps this problem in AD, it should also help the problem in DS. So, why not give it?

And so, since there is not a placebo controlled clinical trial on NTV or Longvida Curcumin for DS, does it mean we should not supplement with it? The same problems present in DS are present in other research studies done with Curcumin and other supplements in people with DS, AD, and the general population. The research studies show it is helpful, so how is it going to hurt the person with DS because there is not a specific study done on this population?

The research is overwhelming that has been done on Down Syndrome and supplementation with various supplements. And also on Longvida Curcumin and patients with AD.

The reports from thousands of families sharing the benefits of using targeted nutritional intervention (TNI) with their child with DS is massive. There is even a plethora of feedback from families using Longvida Curcumin with their child.

So, what are we to do? Sit back and wait until there is a clinical trial done specifically in Down syndrome?

For us, the answer is obvious. No, we will not sit back and wait. I view it as a very important issue and one that doesn't have time to wait. We're talking about waiting to see if we should give something to my brother that has the potential to greatly help his health and his brain! It's my brother's life we're dealing with. His life and well being would be put on the line if we are to wait for research.

I praise God that we did not wait for research on NTV. God greatly used NTV to help my brother. I seriously wonder how he would be if we did not start him on NTV. At the course he was going, he would not be thriving well in his health at all. But, today, he is a different child. He is a healthy, active, smart, happy little boy.

To this day, 6 years since we started NTV, there is still no clinical trial done on it. And I see that as a very likely situation with Longvida Curcumin. Doctors involved in TNI have tried to get clinical trials done and it doesn't happen, because most people are not interesting in making this happen, sadly.

New Longvida Research & Survey

2011-11-11T15:49:00.001-08:00

Ohio State University did a placebo controlled study on Longvida Curcumin recently. The results are encouraging, but it has raised some questions as to what dosage should be used. I will share more details of the study:

They saw an improvement in antioxidant function in the brain. The reduction in serum of Veg-F, which is a build up of red blood cells, but it is not a good thing, as it can lead to senility. There was also a decrease in beta-amyloid markers. All of these things lead to better brain health, so it is encouraging to see that LC works on a variety of levels.

You can see a video of a brief overview of the research here.

The name of the study is: Broad-spectrum anti-aging effects of low-dose curcumin (as Longvida®) in healthy human subjects. The Ohio State University, 2011. Manuscript in development

I will share more information regarding the study once I am able to read the abstract and full text.

For us, we are not changing any dosages on Longvida Curcumin at the moment. We are keeping it at the 2000mg/day dosage.

Blake Ebersole from Verdue Sciences is hoping to be able to get a placebo study done on individuals with DS who take Longvida. In light of that, he has put together a short survey for people to fill out to see how much interest there is in this.

The study link is: https://www.surveymonkey.com/s/Q67PJBC

Study shows Low Melatonin in children with Down Syndrome

2011-11-10T07:00:00.000-08:00

I thought this was an interesting study. I will bold the most important parts, so you don't have to read through it all to see the conclusion.

Although we do not, a lot of people supplement extra Melatonin to their children with DS to help with sleep. This study is interesting in light of that, as a lot of people with DS respond really well to Melatonin. I guess you could get two birds with one stone with this - help with sleep and help reduce oxidative stress.

J Pediatr Endocrinol Metab. 2010 Mar;23(3):277-82.
Melatonin and elimination of kynurenines in children with Down's syndrome.
Uberos J, Romero J, Molina-Carballo A, Muñoz-Hoyos A.
Source

Departamento de Pediatría, Facultad de Medicina, Universidad Granada, Granada, Spain. uberosfernandez@terra.es

Abstract

BACKGROUND:
Heightened activity of superoxide dimutase is an effect derived from the gene dose in the trisomy of Down's syndrome (DS), and has been related to the increased production of hydrogen peroxide and with greater lipid peroxidation. Many of the degenerative changes observed in patients with DS have been associated with the pathological effects of free radicals, and for this reason it is of interest to determine the levels present in these patients of powerful antioxidant molecules such as melatonin, and of metabolites with important neuroprotector and neurotoxic consequences such as those derived from the kynurenine pathway.

PATIENTS AND METHODS:
A study was made of 15 children with DS, together with a control group of 15 non-DS children, matched for age and sex, examined at the Hospital Costa del Sol, Marbella, Spain. Serum melatonin and serotonin were analyzed by RIA; urinary tryptophan metabolites (kynurenine pathway) were determined during periods of light and darkness (09.00-21.00 h and 21.00-9.00 h) by thin-layer chromatography.

RESULTS:
The mean values of serotonin and melatonin were found to be lower in the patients with DS, although the level of nocturnal secretion of melatonin was higher. Urinary excretion of kynurenine was lower in the patients with DS, although greater quantities of kynurenic acid and anthranilic acid were excreted.

CONCLUSIONS:
Patients with DS present levels of plasma melatonin and urinary kynurenine that are lower than the corresponding levels in the control population, together with higher values of kynurenic acid and anthranilic acid. These circumstances constitute an added risk to these patients of damage by free radicals.

Wordless Wednesday...Fun in the Rain for Kids & Birds

2011-11-09T07:00:00.000-08:00

How To Choose What To Give?

2011-11-07T07:00:00.000-08:00

I know it can get overwhelming at times as to what supplements to give, how to afford them, etc. Every family has their own set of supplements they give and the reasons why they give them. Yes, some are the same across the board, but you will typically find a variety of additional supplements that each family uses.

When the discussion of different supplements arises on various message boards, one can feel overwhelmed at times as to what to give.

Should I be giving that too? Oh and that supplement? What about this supplement that I just heard so-and-so recommend?

If you gave every supplement every person suggested, the list would be incredibly long and really expensive.

This is the way we do it:

I research things and I look at all the pros and cons of every supplement. Then, I look at what I feel, from research and our current situation, is the most important for O and he takes those supplements.

Longvida Curcumin is a large expense every month, but that one is an "unquestionable" supplement. One that, because of research and what it does for O, we won't do with out.

The "base" supplements he takes are:

Nutrivene-D Daily Supplement & Nighttime Formula
Longvida Curcumin
Ginkgo Biloba
Zinc
Vitamin D
TMG
Blueberry
Methylcobalamin B12
DHA

There are more supplements that O would be taking, if we were able to do it. At some points we do add more on and then that's just factored into what he needs to take. The supplements I would add on, if possible are:

Coenzyme Q10
EGCG
Seabuckthorn (possibly)

But, because I feel O is getting what he needs with the current supplements he takes, I'm not going to stress over not being able to get every good supplement into him.

There are some things he is simply not able to handle, even though they look like they should be good for him, according to research. Like Probiotics, Piracetam, Nutrivene's Daily Enzyme, or Folinic Acid, to name a few.

If your child can't handle a certain supplement, then maybe he will never be able to handle it, so therefore it's not beneficial for him or her. Or, maybe the child is too young and he will be able to have it again as he gets older. Or, maybe he needs a lower dose. It takes a lot of figuring out to see what works best for your child.

There are also some supplements which many families give, even to young babies, that we simply will not use with O. Or, certain dosages of supplements. Because through research that I've done, I don't feel it is safe to give him.

One of those supplements that we would not give, and many people use, is Prozac. There is no way that we are comfortable giving Prozac to O. I'm quite sure there are other supplements as well, but I can't think of any off the top of my head.

There is a certain Ginkgo Biloba dosage that is recommended by the Changing Minds Foundation which I feel is extremely too high of a dosage. So, we give the recommended dosage from Trisomy 21 Research Foundation & Nutrivene.

If there's something I'm not sure of, I'd rather be safe than sorry. It's my brother's health and well being we are trying to help, not damage, in giving him supplements.

Dr. Henry Turkel's book, part 2: His goal

2011-11-06T07:00:00.000-08:00

You can view the first post covering Dr. Turkel's book here.

Shortly after Dr. Turkel started working with patients who had DS, he attempted something new.

On page 6 he writes,

Beginning in 1959, I attempted to obtain New Drug Approval from the Food and Drug Administration

This attempt would not be without extreme challenges and misfortunes. But, before we get into the detail of that, let's look at a little history first.

A foreword in the book by Bernard Rimland, Ph.D. shares some insightful information to show where Dr. Turkel was coming from.

1. Dr. Turkel, by training a chemist as well as a physician, a man who had already proven himself as a creative innovator by developing a surgical instrument credited with saving hundreds of thousands of lives, developed a treatment (the "U" Series consisting of certain vitamins, minerals and drugs) which he asserts can greatly improve the physical and mental functioning of children with Down's syndrome (sic). He does not assert that it will cure Down's syndrome (sic), but only that it will improve the child's condition, in somewhat the same sense that insulin can greatly improve the health and lengthen the life span of diabetics without changing the genetic or biochemical defect that causes illness.

The goal of Dr. Turkel is the same then as it is now for any doctor who is advocating the use of targeted nutritional intervention. Dr. Turkel was, in a way, before his time, in attempting to help children with Down syndrome in an age where they were typically put away in institutions. Because Dr. Turkel did start to use TNI of sorts so many years ago, you would think more people would be accepting of it now, but that is often not the case.

Dr. Rimland continues,

2. He not only asserts that the "U" series will help these children, he documents it with copious objective evidence. He presents serial photographs, x-rays, and growth curves showing the child before treatment and dramatically illustrating the child's progress at repeated points during the treatment. This evidence is published in books and journals and is clearly visible and understandable even to the layman. No one has questioned the authenticity of this evidence.

This is extremely interesting to me, in that people did see what Dr. Turkel's U Series was able to do in helping people with Down syndrome. Yet, as will be seen as we go through this book, many people admantly opposed this treatment, for no clear reason.

Bernard Rimland goes on,

3. There are no competing treatments. For the most part, children with Down's syndrome (sic) have a completely bleak future. Their mental and physical abilities are so low as to preclude most of them from functioning in society. Their health is usually very poor. Parents are frequently urged to institutionalize these children and forget they ever existed. Thus, the "treatment of choice," with which the Turkel treatment must be compared, is to ignore these children, to offer no treatment, to assign them to oblivion.

4. The Turkel treatment is harmless. Even those who are opposed to it, irrational though their opposition may be, do not deny this. It has been used on thousands of Down's syndrome (sic) children throughout the world, children in frail-to-terrible health, with no harm reported.

This is still true today. The targeted nutritional intervention that people use today is harmless. Yet, there are a few who want to say that it has the potential to cause all sorts of damage, as I shared here and in this post.

Because vitamins & medications have been used in people with Down syndrome for over half a century, where is the evidence that it causes harm? Dr. Turkel wasn't shown it. And it has yet to be shown. I don't believe it can be shown, because overall it doesn't cause harm.

In Dr. Turkel's first chapter in his book, on page 11, he states,

Parents of an infant with Down syndrome want to know everything possible about this condition, but first and foremost, they want to know how they can help their own child. Some parents have been told that their child would disrupt family life. Some have even been advised to withhold surgery needed to save the infant's life. ....

When they come to my clinic, parents are given new hope regarding their child's potential, which, with or without treatment, was probably not nearly as bleak as some doctors predict. Misinformed parents have come in tears. One mother was told that all Down syndrome children develop leukemia, sooner or later. Parents have been told that their child will never walk, talk, or be toilet trained. With rare exceptions, the child will accomplish all of these skills and more, even without medical intervention.

Society has come quite a ways from Dr. Turkel's days. But, they still have a very long way to go. We were given quite a bleak picture of what my brother would be like after he was born and that was just 6 years ago! Today, parents aren't told to shut away their children, but they are encouraged to terminate them. It's so sad.

Dr. Turkel's goal with his U Series was to help children with Down syndrome. It's much the same as the goal of Nutrivene today. The difference though is that Dr. Turkel was working "in the dark", so to speak, because he didn't have the knowledge we now have to show what causes Down syndrome.

This concludes the second post of Dr. Turkel's book. Stay tuned for more!

Specs4Us...Erin's World Frames

2011-11-05T07:00:00.000-07:00

Over the years, especially since O has had glasses, we've wanted to get the frames specifically designed for children with Down Syndrome.

Specs4Us, with the line of frames called Erin's World, were designed by a mother who works in the optical world and happens to have a daughter with Down syndrome.

As their site states,

SPECS4US was created and founded in 2004 by Maria Dellapina with over 25 years in the optical industry and the mother of a four-year-old with Down syndrome. She saw a definite need for this frame line. After two years of searching for an eyeglass frame to fit her daughter, Erin, Maria decided to use her knowledge as both an optician and mother to help Erin and others like her.

We've always had to adjust O's glasses SO much every time he gets a new frame, just so that they would stay on his face. We'd adjust the nose pieces, the temples and even have him wear a strap to keep the glasses on. No matter how good we would have his glasses adjusted, within no time they would be slipping down his face. He'd have to push them up constantly or he would be looking over his glasses.

Plastic frames seemed to fit O somewhat better, but they still weren't sufficient. And we were always limited as to how much we could adjust each frame, otherwise they'd push against his eyes too much and his eyelashes would hit them.

So, after awhile, we found a new optical shop and Marilyn at the shop, was willing to try to get these frames and have them covered by O's insurance. Previously, his insurance wouldn't cover them.

After just a bit of talking to the folks at Specs4Us (they were so friendly and very helpful!), they sent Marilyn 4 frames for O to try. Every frame fit his face well, so it was a hard choice as to which one to choose!

But, in the end we finally got a Specs4Us frame for O and it has made a HUGE difference! These frames would work so well just for any little kid who doesn't have much of a nose bridge.

The difference between Erin's World frames and regular frames is explained on their site,

“Erin’s World” is the frame line specially designed to fit children with Down syndrome superior to the typical frame. Unlike other frames, the bridge is adjusted to fit on their smaller noses and the temples (some people call them arms) are designed to help keep the glasses from constantly slipping.

I took a few pictures of O's Erin's World frames next to his regular frames that he had been wearing so you can see the comparison.

The Erin's World frames are the blue wire frames and his old frames are the black plastic frames.

As you can see in this picture below, the temples are set much lower than the regular frames. And the nose bridge piece is set much lower as well.

Erin's World frames are so worth it! They've made a huge difference for O and how he's been able to see. He doesn't have frames that slip down his face anymore. He doesn't have to look over the top of his glasses anymore either.

Gluten-Free Pumpkin Oatmeal Pancakes

2011-11-04T13:14:00.000-07:00

Pumpkins have been cheap, since it's fall time. So, we've been making quite a few pumpkin dishes. A couple weeks ago we had some pumpkin puree thawed out from the freezer, so I thought it'd be nice to make pumpkin pancakes. We also had pumpkin syrup with the pancakes.

All of it was yummy!

Gluten Free Pumpkin Oatmeal Pancakes

(remember there is a printer friendly option at the bottom of every post)

Ingredients:

1 cup rice flour

1 tablespoon sugar

2 teaspoons baking powder

1/2 teaspoon salt

1/2 teaspoon ground cinnamon

2 eggs

1 cup milk

1/2 cup of pumpkin puree

2 tablespoons oil

1/2 cup to 2 cups oatmeal*

Directions:

1. Combine all the dry ingredients, except for the oatmeal, in a bowl and mix together.

2. In a separate bowl mix together the eggs, milk, pumpkin and oil. Add the wet ingredients to the dry ingredients.

*At this point, you can add the desired amount of oatmeal to the recipe. Add just a small amount if you don't want the batter very thick (1/2 cup), or add up to a couple cups for a thicker batter. I multiplied the recipe a few times so added quite a bit of oatmeal.

You can see the consistency of the batter in this picture. It was a medium consistency, which made the pancakes not too thick and not too thin.

4. Cook the pancakes on a griddle or frying pan until lightly brown and ready to come off!

Enjoy!

Rick Santorum's daughter with Trisomy 18

2011-11-03T07:00:00.000-07:00

I came across this article on LifeSiteNews for Rick Santorum's daughter who has Trisomy 18.

Rick Santorum is a GOP presidential candidate. He did a recent video about his daughter with Trisomy 18, who is 3 years old.

I am not posting this for any political reason.

I'm simply sharing it to share what Rick Santorum talks about in regards to his daughter with T18.

It's so sad that his wife and he were told to prepare for their daughter's death after she was born, instead of help her. While it is true many babies born with Trisomy 18 die shortly after birth, there are some who live for years.

Rick says in the video, they decided to focus on her living. And, from the video, she looks like she is thriving.

Winner of the Giveaway!

2011-11-02T07:00:00.000-07:00

Thanks for all those who entered the book giveaway. Using Random.org, the winner of the giveaway is #5:

And that is Julie from It's Mina's World, We Just Live In It!

Congratulations Julie!! Send me an email at qf {at} gotdownsyndrome {dot} net (remove spaces) with your address and the book will be mailed out to you.

31 for 21: Giveaway!!

2011-11-01T13:13:00.000-07:00

All other posts are below this giveaway. Scroll down to see the other posts on the blog!

As many of my readers probably know, a couple years ago my mom and I published a book called Down Syndrome: What You CAN Do. We put together articles and stories from doctors, therapists, professionals, parents, families, etc to share that you can do for people with Down Syndrome.

So, I thought I would do a giveaway of the book on the blog! This giveaway will end November 1st at 11:59pm. A random winner will be drawn on November 2nd using random.org and the winner will be notified via the blog and email!

To enter the giveaway:

Simply leave a comment here. For additional entries, you can do one or all of the following options, just be sure to mention it in your comment here or leave additional comments for each additional entry.

1. Tweet about the giveaway (link back to this post or to the blog!)
2.Share about the giveaway on Facebook
3. Blog about the giveaway on your blog

Have fun and we'll see who the winner is!

To give a little more detailed info on it:

Down Syndrome: What You CAN Do was written to give parents and families hope through positive and truthful information about Down syndrome.

While this book is an invaluable resource for families when they first hear their child has or will be born with Down syndrome, it is also very helpful for families who are already on the journey of raising a child with Down syndrome.

This book is an excellent reference for doctors and other professionals to assist when giving a diagnosis, both prenatally and postnatally.Down Syndrome: What You CAN Do was written to give parents and families hope through positive and truthful information about Down syndrome.

While this book is an invaluable resource for families when they first hear their child has or will be born with Down syndrome, it is also very helpful for families who are already on the journey of raising a child with Down syndrome.

This book is an excellent reference for doctors and other professionals to assist when giving a diagnosis, both prenatally and postnatally.

Down Syndrome: What You CAN Do covers many topics, beginning with a chapter which deals with the acceptance and capability of children with DS. Other chapters include how to breastfeed a child with Down syndrome, nutritional intervention, and more. Important medical information including heart defects, thyroid concerns, and gastrointestinal problems are discussed. Some of the other chapters detail what can be done through early intervention such as oral motor speech therapy, physical therapy and other therapies. Adoption stories and adoption resources for families are provided. Many stories from parents and siblings are featured to give support to those who read this book. A long list of support groups & recommended books are also included.

The forward of the book is written by self advocate, Karen Gaffney and the introduction is written by Dr. Lawrence Leichtman.

Some Reviews:

“The book is excellent and filled with a lot of great resources.” Donald Michael, MD, PC

"When I received the book, after glancing through it, I plunked it into my husband's lap and said, ‘That's all the things I have been reading about and researching these past 5 years.’ Now it's all in one place, with research references to back everything up" Gail Udell, Co-founder/Co-President Emerald Family Down Syndrome Network

A 15 page preview of the book can be seen by clicking here. Click on "Preview" below the picture of the book.

The book can be ordered from the following places:

LuLu
*$22.73 + shipping for a hard copy of the book.
$5.00 for an e-Book version of the book.

International Nutrition
*$27.95 + shipping for a hard copy of the book.

The book can also be ordered through Amazon, Barnes & Noble and many other online book stores. You should be able to look the ISBN up at any bookstore and have it ordered.

31 for 21: Dr. Henry Turkel's book, Post 1: Overview

2011-10-31T07:00:00.000-07:00

For the last year, I've wanted to write some posts up going over Dr. Henry Turkel's book, Medical Treatment of Down Syndrome and Genetic Diseases, copyright 1985. From what I know, the book is out of print. I was able to find it used online somewhere several years ago.

It was a great buy and is an extremely interesting book. It's packed full of information and very fascinating to see what he had to work with and through in those early years. It will take several posts to go over the details in this book, so I will do that over a few weeks, Lord willing. I have 5 posts "written" on a few pieces of paper right now (and there will likely be a few more than that), so I have to put them all up here on the blog.

For those who don't know who Dr. Turkel is, here's just a snippet of background info:

Dr. Henry Turkel was a doctor in the 1950's and earlier who treated patients with Down syndrome and other genetic conditions with nutritional supplements, diet and medications.

On Page 1 of the book, Dr. Linus Pauling writes,

There is an increasingly great and increasingly convincing body of evidence that the use of vitamins, minerals, and other orthomolecular substances in the proper amounts, the amounts leading to optimum health and to the best treatment of disease, has great value in the control of infectious diseases, cancer, heart disease and genetic diseases. there seems, however, to be a bias against these substances on the part of the medical profession and of nutritionists. The result is that there is opposition to orthomolecular medicine.

The work of Dr. Henry Turkel provides a striking example of the way in which this opposition operates to the detriment of the health and well being of a large number of people. Dr. Turkel has developed, over a period of decades, a treatment of mentally retarded children with the use of vitamins, minerals, cerebral stimulants, and other substances. He has gathered together a convincing body of clinical observations showing that the genetic condition of mental retardation need not be accepted as inevitably leading to permanent defect and inability of the individual to function in normal society. Dr. Turkel has indeed provided new hope for the mentally retarded and for members of their families, hope that a great improvement in functioning can be achieved.

This is a good overview of what Dr. Turkel's book goes over. It covers everything from the beginning of his development of the U Series, specific cases of Dr. Turkel's patients, his attempt to get his U Series FDA approved, and the success of patients on the U Series with DS both in the US and abroad.

Dr. Turkel earned his medical degree in 1936 and went into private practice. He also perfected biopsy instruments before the second world war. The instruments called the Turkel Trephine Instruments as well as the Turkel Needle. All of which were used routinely in World War II. He was also appointed consultant for the Surgeon General in 1952.

A boy named Peter was who started Turkel's research into Down Syndrome. Peter's father inquired about possible treatment for his son. Dr. Turkel knew nothing about Down Syndrome, but he had studied how nutrition can help other genetic conditions.

When Dr. Turkel first started working with Peter and his other early patients with DS, it was not known what caused DS. As he states in his book on page 5,

When I first treated Peter, maternal exhaustion, low thyroid, depleted ovarian function, and similar deficiencies were proposed as the cause of the disease.

So, what Dr. Turkel did was,

Instead of considering the underlying cause of Down syndrome, I looked at the anomalies and realized that many of them were similar to those diagnostic of genetic diseases that I had already treated. I immediately considered the possibility of medical/nutritional therapy. I dispensed the three units of the "U" Series simultaneously, adding a broad spectrum of vitamins and minerals in pharmocological dosages, as well as enzymes, to correct the physical retardations that I attributed to malnutrition caused by the accumulations.

Peter is who brought Dr. Turkel into the realm of patients with DS and mental retardation, as Turkel writes on page 6,

Peter improved and news about the "U" Series spread. With few exceptions, since the 1950's, I have restricted my practice to the treatment of patients with Down syndrome and other diseases associated with mental retardation.

This finishes the first post about Dr. Turkel's book. I will leave you waiting for the next post to find out what comes next :).

31 for 21: History of Targeted Nutritional Intervetion

2011-10-30T07:00:00.000-07:00

I've decided to start to go over Dr. Henry Turkel's book which he wrote in the 1980's. Dr. Turkel was one of the first doctors to use nutritional supplementation in people with DS. The first post covering his book is scheduled to post tomorrow. But, before that, I thought it would be helpful to share an article which is in our book that goes over the history of Targeted Nutritional Intervention (TNI).

The History of Targeted Nutritional Intervention
By Qadoshyah Fish

Henry Turkel

The idea of giving vitamin supplements to individuals with Down syndrome has been around for many years. It started in the 1950’s with Dr. Henry Turkel’s work¹. The effects and all that the extra chromosome did were not yet known at that time. Therefore, Dr. Turkel’s work was, in a way, working in the dark. It was not until 1974 that researchers began to realize what genes were on the 21st chromosome. It was not until a few years later that it was discovered some of these genes were actually being over-expressed in patients with Down syndrome and therefore causing some or all of the problems associated with Down syndrome. This would not be fully realized until years later when the Human Genome Project was done in the 1990’s. In the 1970’s and years prior, it was thought that the genes from the extra chromosome were “turned-off” and played no role once the person was born, as can be seen in this quote from Dr. Turkel’s book,

The medical consensus that there were no metabolic imbalances in Down syndrome was so deeply entrenched that as recently as 1977, some medical students were still being taught that the extra genes encode structural defects before birth and then “turn off” (Expert’s testimony in Superior Court, Los Angeles, California #C 88260). (Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985. Page 172)

Dr. Turkel’s supplement was called the “U Series.” It was a protocol with a variety of vitamins, minerals, drugs and many other nutrients to be taken throughout the day. Because Dr. Turkel’s work was without all the medical research that we have today, the doses of vitamins and nutrients that were given patients were very large “mega doses” of nutrients. His protocol was conceived after the father of a boy with Down syndrome approached Dr. Turkel in 1940 about a “possible treatment for his son.” Dr. Turkel’s “U Series” helped this child and therefore word spread about the “U Series.” In the 1950’s Dr. Turkel restricted his practice, with a few exceptions, to only patients with Down syndrome and other forms of mental retardation. Dr. Turkel saw many improvements in the patients in which he used the “U Series.”

In 1959, Dr. Turkel applied for a “New Drug Approval” for his “U Series” from the Food and Drug Administration, but they denied Dr. Turkel’s appeal for approval. It was denied because the FDA did not consider the newly discovered implications of the extra genes on the extra chromosome 21 and therefore “concluded that since the ‘U’ Series could not remove the chromosome, it could not help the patients.” (ibid, page 209). The FDA stopped Dr. Turkel from interstate distributing of the “U Series”, but he was legally able to sell the “U Series” within the state of Michigan.

Dr. Jerome Lejeune, who discovered the cause of Down syndrome, Trisomy 21, was also using vitamin and nutritional supplements with his patients with Down syndrome during the 1960’s. He was not using the “U Series,” but he was using some of the same vitamins and nutrients that were in the “U Series.”

Jack Warner

Dr. Jack Warner started his private practice in the early 1960’s². A few years after beginning his practice, Dr. Warner saw his first patient with Down syndrome. It was then that Dr. Warner started extensively researching Down syndrome. In 1984 his research led him to meeting Dr. Turkel. Dr. Warner was impressed with the good results that he saw with the “U Series” that he started referring many of his patients to Dr. Turkel. After constant research and continuing to see the beneficial effects from the “U Series” it led Dr. Warner to several other doctors and biochemists from the Linus Pauling Institute. This gave new knowledge and showed the increased benefits and effectiveness of certain nutrients from new research which led Dr. Warner to design the High Achievement Potential Capsules (HAP Caps) to be used with patients with Down syndrome.

HAP Caps were formulated in an FDA laboratory and received FDA approval in 1986. Unfortunately Dr. Warner’s research and HAP Caps have “fallen by the wayside” since his death in 2004.

Nutrichem’s MSB Plus

In 1982 Kent Macleod met the mother of a child that was severely brain damaged and had seizures³. He was able to treat this child with certain vitamins and it helped him tremendously, stopping his seizures. This mother began to research how nutritional supplements may benefit her son and found the work of Dr. Henry Turkel. She asked Macleod to look at the research and findings of Dr. Turkel. She set a meeting up with Macleod and some mothers of children with Down syndrome to discuss the work and claim of Dr. Turkel. At this meeting, Macleod told the parents that if he were to consider this treatment, he would change Dr. Turkel’s formula. Therefore, Macleod started to develop the first MSB Plus formula. Macleod’s work with children with Down syndrome continued to grow slowly over the years by word of mouth as parents told other parents the health benefits.

In the early 1990’s, Macleod was contacted by a mother, Dixie Lawrence, who’s adopted daughter had Down syndrome. Dixie asked Macleod if he would consider customizing the MSB formula based on her daughter’s blood work results. At this time there was research and work being done in France by Dr. Marie Peeters-Ney and Dr. Jerome Lejeune on amino acid deficiencies being linked to certain genes on the 21st chromosome. After hearing the positive reports by parents who had been giving their children MSB Plus for the past 10 years and seeing the research done in France, Macleod was convinced to work with Dixie on a customized formula for her daughter. Interest in Nutrichem’s MSB Plus grew tremendously after Dixie aired on the Day One program in 1995.

Today Nutrichem still provides their MSB Plus formula to thousands of families all over the world.

International Nutrition’s Nutrivene-D

Nutrivene-D was originally developed by Dixie Lawrence Tafoya for her daughter with Down syndrome in the early 1990’s⁴. Dixie learned of Dr. Turkel “U Series” and was able to find Dr. Turkel in Israel where he had retired. Dr. Turkel informed Dixie that he was not seeing patients anymore and that he had left his “U Series” to a pediatrician, Dr. Jack Warner, in the U.S.⁵. Dr. Warner greatly altered the “U Series” formula, which would now be known as the HAP Caps. Dixie decided to pursue this further and therefore she and 30 other families met with Dr. Warner. The HAP Caps did not have much impact on Dixie’s daughter. By this time research had been published that showed metabolic differences in patients with Down syndrome. Using this research, input from numerous scientists and her daughter’s blood and urine analyses, Dixie started to develop her own TNI formula. Dixie “fine tuned” the formula by looking at the specific abnormalities measured in her daughter’s blood and urine testing.

The scientists who were initially involved by researching abstracts and articles which documented metabolic and nutrient concerns in Down syndrome also helped reference the TNI formula to the U.S. RDA for safety.
Today, the Nutrivene-D formula still uses scientists and doctors to make updates and improve their formula based on current research and studies which are done. Certain nutrients may be added or changed, as new research emerges. The Nutrivene-D formula is used by thousands of families throughout the world.

Conclusion

Since the calm beginnings in the 1950’s and Dr. Turkel’s approach with “mega-doses” of nutrients, to where we are at currently with Nutrivene-D, it has been a long path and will continue to be an ever changing path as new research emerges. Dr. Turkel started with a good idea, but thanks to new research, and much work to scientists, parents, and doctors, we can now safely give children with Down syndrome a formula which is “targeted” to meet their specific metabolic and nutrient needs.

1)    Medical Treatment of Down Syndrome and Genetic Diseases by Henry Turkel, M.A., M.D., Ilse Nusbaum, M.A. Copyright 1985
2)    Warner House Clinic History. http://www.warnerhouse.com/
3)    Down Syndrome and Vitamin Therapy, Unlocking the Secrets of Improved Health, Behaviour and Intelligence by Kent Macleod. Printed October 2003
4)    A Circle of Friends II by Aunt Gini Mullaly & Deborah Saxton-Bolt. Copyright 2000.
5)    Smart Drugs & Down’s Syndrome by Steven Wm. Fowkes & Ward Dean, M.D. February 14, 1994 issue of Smart Drug News. [v2n10]

31 for 21: Gluten-Free Chocolate Chip Pancake Muffins

2011-10-29T07:00:00.000-07:00

I haven't put very many gluten-free recipes up as of late. So, I think it's well over-due for some.

Here's a yummy breakfast (or snack-time) muffin that we made a few days ago. They aren't overly sweet, but they are yummy.

I found the recipe via Kevin&Amanda.com who did a guest blog post on another blog. The original recipe is for miniature cupcakes, but I decided to change it up some. The original recipe is also not gluten free, but you can see it here. One of the big variations I did to the recipe besides making it gluten-free, was not using the maple syrup, simply because we didn't have any. I bet these would turn out really good if there was maple syrup or even maple extract in them. I simply used a lot of vanilla extract in the recipe.

So, here goes:

Gluten-Free Chocolate Chip Pancake Muffins

Yield: 27 muffins, 12 miniature muffins

Ingredients:
1 cup butter (softened) or lard
1 cup brown sugar
3 cups rice flour
2 teaspoons baking powder
1/2 teaspoon salt
1 1/2 tablespoons vanilla extract
2/3 cup milk
4 eggs
1 cup chocolate chips

Directions:
1. Preheat oven to 350 degrees.
2. Cream the butter and sugar on medium speed until well combined. Add the vanilla, eggs and milk, beating well after each addition.
3. In a separate bowl, whisk together the flour, baking powder and salt.
4. Add in the flour mixture, stirring just until it's combined.
5. Add the chocolate chips.

6. Bake at 350 for 12-18 minutes (8-10 for the mini muffins).

Enjoy!

31 for 21: Special Olympics Figure Skater Lauren Miller

2011-10-28T07:00:00.000-07:00

I originally saw this video on the blog, Life With My Special K's. But, I thought I would share it here, as this young lady with DS does an amazing job figuring skating at Special Olympics.

2011 Special Olympics Skating Expo - Lauren Miller has Down Syndrome and is 13 years old. She has been skating since she was 6 years old. Lauren is also Global Messenger for Special Olympics Illinois.

31 for 21: Blueberry

2011-10-27T07:00:00.000-07:00

I mentioned in a post a few weeks ago that we would be supplementing extra Blueberry. So, I thought I'd share some articles from Life Extension which goes over the benefits of Blueberry.

We use Swanson Vitamins Greenfoods Blueberry Extract.

I will paste one overview article from LEF here and link to a few others.

Blueberries: Colorful Protection for a Healthier Heart, Sharper Brain, and Cancer Defense

Blueberries: The World's Healthiest Food

Report: Blueberries

Maintaining Youthful Cognitive Function with Blueberries

By Laurie Barclay, MD

Published scientific studies show that blueberries are packed with nutrients that not only improve cognitive function and delay neurological decline but also protect delicate brain structures against oxidative damage.

Rich in powerful polyphenol compounds, blueberries have been shown to uniquely protect the brain against noxious influences such as free radicals, radiation, inflammation, and excitotoxicity. Furthermore, blueberries may even reverse age-related deficits in cognitive and motor function. Scientists have noted that blueberry compounds are readily absorbed into the bloodstream, then cross into the brain where they influence regions involved in memory and motor function—suggesting therapeutic roles against Parkinson’s and Alzheimer’s.

In this report, we speak with some of the scientists at the forefront of this exciting area of research.
Blueberries: A Nutritional Powerhouse

Modern science has made much progress in discovering the benefits of specific compounds found in fruits and vegetables, such as vitamin C and resveratrol. Nutrient-dense “superplants” go a step further and are packed with complex blends of phytonutrients that work together to promote optimal health.
Blueberries: A Nutritional Powerhouse

One such “superfruit” is the blueberry, which contains a powerhouse of nutrients that may defend the body against the ravages of aging and disease. Blueberries are rich in polyphenols, of which some of the most beneficial are a class of flavonoids called anthocyanins, which give the berry its intense blue color.1 These remarkable compounds as well as proanthocyanidins, flavonols, and tannins, which are also found in blueberries, act not only as antioxidants,2 but have been shown in the laboratory to fight inflammation as well.

This dual effect gives anthocyanins the potential to fight cancer,3-6 cardiovascular disease,5 inflammation,7 and aging and degeneration of nerve cells.8,9

Oxidative stress and inflammation are thought to be common culprits not only in aging itself, but also in cardiovascular disease, Alzheimer’s disease, and other neurodegenerative diseases plaguing our graying population. Population studies suggest that consuming a diet high in antioxidants, such as those found in fruits and vegetables, may forestall the onset of Alzheimer’s disease and other dementias.10,11 Polyphenolic compounds found in blueberries can decrease the age-enhanced vulnerability to oxidative stress and inflammation. Compared with other fruits and vegetables, blueberries are among the highest in antioxidant capacity, or in their ability to scavenge harmful free radicals, as measured by the oxygen radical absorbance capacity (ORAC) test.12 Similarly, wild blueberries outpace other fruits such as cranberry, apple, and grapes in the cellular antioxidant activity assay, a newly developed, next-generation technology that measures antioxidant effects within the cells themselves.13
Alzheimer’s disease

Despite the undisputed advances made possible through a variety of drugs available to combat various diseases, drugs have powerful effects, some beneficial, some potentially harmful. The potential risks must be considered when prescribing or taking medications, especially for chronic diseases of aging in which treatment may be needed over the long term.

On the other hand, fruits and vegetables that are naturally found in our diet can be safely processed by the body without concern for possible side effects. Appropriate intervention with blueberries and their extracts may promote health and combat disease—without the risk of adverse complications common with powerful drugs.

A wealth of studies published in 2007 reveal that blueberries do just that. Animal studies have shown that pterostilbene, an active ingredient in blueberries, may specifically help to prevent colon cancer.14 Another constituent of blueberries—tannins—can kill disease-causing bacteria,15 while blueberry phenolics have a beneficial effect on bacteria in the colon, thereby reducing gastrointestinal inflammation.16 Further up-to-the-minute research shows that the antioxidant power of blueberries promotes eye health and protects against chromosomal damage,9 while anthocyanins found in berries may also improve the function of brain cells, with corresponding behavioral improvements.8
Blueberry Extract Protects Brain Cells From Injury

In an exciting study published recently, the National Institute of Aging looked at the effect of a blueberry-enriched diet in protection from brain injury in rats. 17 Young rats received a diet containing 2% blueberry extract, or a control diet, for at least eight weeks. Some of the rats were then given injections of kainic acid, a noxious chemical producing oxidative stress and overexcitability of nerve cells, into the hippocampus, a brain region involved in memory and learning.

Rats that received kainic acid injections clearly had impaired learning performance compared with control rats. However, those rats that had received the blueberry-supplemented diet before kainic acid injection had much less impairment than those that received the control diet. Even more amazingly, microscopic examination of brain tissue confirmed that rats receiving the control diet and kainic acid injections had significantly greater loss of brain cells than rats pretreated with the blueberry-supplemented diet.
Blueberry Extract Protects Brain Cells From Injury

Donald K. Ingram, PhD, from the Nutritional Neuroscience and Aging Laboratory, Pennington Biomedical Research Center, Louisiana State University System in Baton Rouge, who collaborated with the National Institute of Aging on this study told Life Extension, “Beyond the demonstrated antioxidant activity, blueberries appear to stimulate stress responses that protect cells [from] a great variety of injuries.” He added, “Evidence that blueberries could be helpful to the aging brain is derived from a variety of carefully conducted rodent studies showing improved performance of aged animals in behavioral tasks, as well as increased protection against various forms of brain injury relevant to human neurodegenerative disease.”

Dr. Ingram’s group took their findings one step further. They found that serum from the blood of rats fed the blueberry-enriched diet actually protected cells grown in the laboratory from death induced by hydrogen peroxide, a potent oxidative stressor that generates many free radicals. The researchers concluded that blueberry supplementation may protect against neurodegeneration and cognitive impairment caused by excitotoxicity and oxidative stress.17

“Given the epidemiological evidence that diets high in fruit and vegetable content, particularly those of dark color [may help protect against oxidative stress], consumption of blueberries could be highly recommended as part of a healthy diet,” Dr. Ingram said. “There is a great need now for systematic clinical trials to confirm the beneficial effects of blueberry consumption on a number of important health measures, including behavioral function as well as risk factors for age-related disease, such as cardiovascular disease and diabetes.”

Blueberry Extract May Prevent Age-Related Brain Impairment

The potential health benefits of eating blueberries and similar fruits, and the scientific evidence supporting this potential, were also highlighted recently at the 2nd International Symposium on Berry Health Benefits, held in June 2007 at Oregon State University in Corvallis.

One of the main presenters at this symposium was James A. Joseph, head of the Neuroscience Laboratory of the USDA-ARS Human Nutrition Research Center on Aging at Tufts University in Boston, MA.
Blueberry Extract May Prevent Age-Related Brain Impairment

His group sought to confirm whether blueberry supplementation promotes communication between nerve cells, and so theoretically reduces the risk of cognitive and motor impairments associated with aging. Using an animal model, Dr. Joseph’s group studied the effects of a blueberry-supplemented diet on movement and memory problems related to aging, as well as on the underlying chemical and physical changes in the brain.8

“We fed rats a diet containing blueberries, strawberries, or spinach (the equivalent of you eating a large spinach salad, or a cup of blueberries, or about a pint of strawberries) for eight months, beginning at about 19 months of age, at which time they’re starting to show signs of aging in cognitive and motor function,” Dr. Joseph told Life Extension. “We showed that these animals did better than the ones that were maintained on non-supplemented diets.”

Compared with the rats that received the control diet, the aging rats that received supplemented diets were much less likely to develop impairments in water maze performance and on other tests of memory, learning, and coordination, such as balancing on a narrow or spinning rod. What was even more exciting was that when aged rats that already had impairments on these tests were given blueberry extract, their performance improved or even returned to normal!8

“The blueberries were pretty good at blocking some of the effects of the oxidative stressors; in other words, they were fairly good scavengers of free radicals, [and] we also started looking at other mechanisms, and other potential benefits that they might have,” Dr. Joseph said. “We showed that neurogenesis—the growth of new neurons—is increased in these animals, which goes along with the behavioral improvements that we saw.”

Increased levels of a neuronal chemical known as extracellular signal-regulated kinase (ERK), which protects nerve cells, gave further proof of neurogenesis in the blueberry-supplemented animals. In fact, ERK has been shown to be crucial for a variety of memory tasks, making it uniquely poised to change the neuronal and behavioral effects of aging.

Not only is blueberry supplementation associated with growth of new nerve cells,18 but existing nerve cells are better able to communicate with one another through a process known as signal transduction. Levels of enzymes involved in signal transduction, such as GTPase and protective mitogen-activated protein (MAP) kinases, actually increased in the blueberry-supplemented animals.

This led the researchers to suggest that “nutritional interventions with high antioxidant fruits, such as berryfruits, may prove to be a valuable asset in strengthening the brain against the ravages of time and retard or prevent the development of age-related neurodegenerative diseases.”8

Not surprisingly, researchers in Dr. Joseph’s laboratory have confirmed that anthocyanins in blueberries are able to cross the blood-brain barrier of supplemented animals and localize in various brain regions important for learning and memory.19 Using mouse microglial cells (cells that nourish, protect, and enhance the function of brain cells) they also studied the mechanisms by which anthocyanins protect nerve cells and enhance their function.20

“The anthocyanins were localized in the brain, and the more different ones that were localized in the brain, the better the cognitive behavior was,” Dr. Joseph said. “We know that they are very good antioxidants, and very good anti-inflammatories. What we know from our work in mouse microglial cells is that these polyphenols can inhibit the stress pathways at several points involved in the inflammatory pathways, with reductions in inflammatory cytokines.”

This research suggests that blueberries produce antioxidant and anti-inflammatory effects by directly changing oxidative and inflammatory stress-signaling pathways. In the laboratory, blueberry extract prevented harmful biochemical changes associated with exposing microglia to an inflammatory substance.20
Blueberry Extract Protects Specific Brain Region From Injury

“In Alzheimer’s disease and in Parkinson’s disease, it’s postulated that these microglia become very overactivated and start to destroy the cells, functioning deleteriously instead of being beneficial to the brain,” Dr. Joseph explained. “When that happens, they can’t be activated and used for other purposes.”

Although injury and stress ordinarily activate the microglia to release substances that will protect nerve cells, pathological activation of microglia may aggravate the progressive damage associated not only with Alzheimer’s disease and Parkinson’s disease, but also with stroke, multiple sclerosis, and human immunodeficiency virus (HIV)- or AIDS-associated dementia.20,21

An interesting model system to study Alzheimer’s disease is the transgenic mouse that is genetically engineered to have variations in amyloid precursor protein (APP) and presenilin-1 (PS1), proteins that are important in producing the brain pathology characteristic of Alzheimer’s disease. Because of the APP mutation, transgenic mice have increased amounts of amyloid-beta, a protein fragment that makes up the “neuritic plaque,” which is the hallmark of this disorder. When transgenic mice were maintained on a blueberry-supplemented diet, the levels of two neuroprotective chemicals, extracellular signal-regulated kinase and protein kinase C, which are involved in learning and memory, were found to be increased.

Transgenic mice fed the blueberry-supplemented diet were also better able to navigate a maze than their counterparts fed a control diet, even though both groups of animals developed brain plaques. In transgenic mice, blueberry supplements appeared to enhance signaling at the level of the kinases, thereby increasing the sensitivity of brain receptors in the striatum that are involved in memory.8,22

Blueberry extract also reduced stress signaling caused by exposing brain cells from the hippocampus to the neurochemical dopamine or to amyloid-beta, the protein that accumulates in the brains of patients with Alzheimer’s disease.23

Blueberry Extract Protects Specific Brain Region From Injury

In collaboration with NASA at Brookhaven National Laboratory, Dr. Joseph’s group is studying a model system to help understand the injurious effects of radiation on the brain. Young rats exposed to about 150 rads of heavy particle radiation, of the type that astronauts are exposed to on long-term space flights, develop impairments in motor and cognitive function similar to those seen with aging.8,24

“If we pretreat these animals for eight weeks with a diet containing blueberries or strawberries, we find that we can block the effects of the radiation,” Dr. Joseph said. “What’s interesting is that on some behaviors, the strawberries work better, and, on other behaviors, the blueberries work better.”

Specifically, the proanthocyanins in blueberries seem to be drawn to the striatum, a brain structure controlling movement as well as certain memory tasks. The striatum is also one of the brain regions most affected by Parkinson’s disease.

In terms of whether there are actual brain regions where these polyphenols may have receptors, Dr. Joseph said, “If you think about it for a moment, why not—there are opioid receptors in the brain, caffeine receptors, and [marijuana] receptors. We haven’t isolated them yet, but we’re trying to tease out these mechanisms and see which may have the most effect as far as producing the beneficial properties of blueberries.”

If the proanthocyanins in blueberries have specific benefits within the striatum, it seems reasonable to assume that blueberry extract might nurture the predominant population of nerve cells located in the striatum, namely, neurons containing the neurotransmitter known as dopamine. Depletion of dopamine from the striatum is the biochemical basis underlying the rigidity, stiffness, and tremor seen in Parkinson’s disease.

In a rat model of Parkinson’s disease and its treatment,25 dopamine was depleted from the striatum, into which embryonic nerve cells containing dopamine were transplanted. Compared with control rats fed standard lab chow, those fed a diet containing 2% blueberry extract had significantly greater survival of transplanted nerve cells. These nerve cells also functioned well, as seen by better balance on a rotating rod test in the rats given blueberry extract than the controls.

“These findings provide support for the potential of dietary phytochemicals as an easily administered and well-tolerated therapy that can be used to improve the effectiveness of dopamine neuron replacement,” the authors wrote.25

What You Need to Know: Blueberries

    Compounds in blueberries known as flavonoids, especially the anthocyanins, have antioxidant and anti-inflammatory properties, giving them great potential to fight aging, Alzheimer’s disease, and other chronic ailments.

    Blueberries appear to protect cells from a wide range of injuries by exerting potent antioxidant and anti-inflammatory effects to directly change oxidative and inflammatory stress-signaling pathways.

    In animal studies, a blueberry-enriched diet has been shown to protect against loss of brain cells seen with different types of brain injury and aging, as well as against associated impairments in memory, learning, and coordination.

    Blueberry supplementation is also associated with growth of new nerve cells, and with better communication between existing nerve cells through the process known as signal transduction.

    Anthocyanins in blueberries enter the brains of supplemented animals, where they lodge in the striatum, a specific area controlling certain types of memory and motor function. The striatum is also predominantly involved in Parkinson’s disease.

    Population studies in humans suggest that diets high in fruit and vegetables—particularly those of dark color, such as blueberries—may protect against oxidative stress, Alzheimer’s disease, and other chronic conditions.

    Experts interviewed by Life Extension highly recommend consumption of blueberries as part of a healthy lifestyle program.

Human Studies With Blueberries

In human volunteers, studies have shown that polyphenols and antioxidants in blueberry juice are easily absorbed and result in increased blood levels.26

Testing blood samples of these volunteers showed that drinking a blueberry-apple juice cocktail for four weeks resulted in 20% protection against chemical damage to the DNA in white blood cells. Individuals with certain genetic variations were more likely than others to show this protective effect.

In other research, it is known that antioxidant capacity in the blood normally decreases after a heavy meal because metabolizing the food increases free radicals. However, studies in healthy volunteers have shown that eating blueberries increases the level of antioxidant capacity in the blood. Eating high-antioxidant foods, such as blueberries, with each meal as part of a healthy diet is therefore a tasty antidote to prevent periods of oxidative stress that ordinarily follow eating.12
Blueberries For Life

“If I told you to take a certain drug, or to have a certain procedure, without knowing whether or not it’s been tested fully in people and found not to be harmful, I’d be very remiss in doing that, but I have no trouble recommending that someone eat berries or add foods with a lot of antioxidants to their diet,” Dr. Joseph concluded. “There is a lot of data out there which suggests that people who eat a diet high in fruits and vegetables are less likely to develop some of the diseases that occur in aging. It’s like your mother said: eat your fruits and veggies—they’re good for you.” •

If you have any questions on the scientific content of this article, please call a Life Extension Health Advisor at 1-800-226-2370.
References

1. Nicoue EE, Savard S, Belkacemi K. Anthocyanins in wild blueberries of Quebec: extraction and identification. J Agric Food Chem. 2007 Jul 11;55(14):5626-35.

2. Srivastava A, Akoh CC, Fischer J, Krewer G. Effect of anthocyanin fractions from selected cultivars of Georgia-grown blueberries on apoptosis and phase II enzymes. J Agric Food Chem. 2007 Apr 18;55(8):3180-5.

3. Boivin D, Blanchette M, Barrette S, Moghrabi A, Beliveau R. Inhibition of cancer cell proliferation and suppression of TNF-induced activation of NFkappaB by edible berry juice. Anticancer Res. 2007 Mar;27(2):937-48.

4. Huang C, Zhang D, Li J, Tong Q, Stoner GD. Differential inhibition of UV-induced activation of NF kappa B and AP-1 by extracts from black raspberries, strawberries, and blueberries. Nutr Cancer. 2007;58(2):205-12.

5. Neto CC. Cranberry and blueberry: evidence for protective effects against cancer and vascular diseases. Mol Nutr Food Res. 2007 Jun;51(6):652-64.

6. Seeram NP, Adams LS, Zhang Y, et al. Blackberry, black raspberry, blueberry, cranberry, red raspberry, and strawberry extracts inhibit growth and stimulate apoptosis of human cancer cells in vitro. J Agric Food Chem. 2006 Dec 13;54(25):9329-39.

7. Torri E, Lemos M, Caliari V, et al. Anti-inflammatory and antinociceptive properties of blueberry extract (Vaccinium corymbosum). J Pharm Pharmacol. 2007 Apr;59(4):591-6.

8. Joseph JA, Shukitt-Hale B, Lau FC. Fruit polyphenols and their effects on neuronal signaling and behavior in senescence. Ann NY Acad Sci. 2007 Apr;1100:470-85.

9. Zafra-Stone S, Yasmin T, Bagchi M, et al. Berry anthocyanins as novel antioxidants in human health and disease prevention. Mol Nutr Food Res. 2007 Jun;51(6):675-83.

10. Dai Q, Borenstein AR, Wu Y, Jackson JC, Larson EB. Fruit and vegetable juices and Alzheimer’s disease: the Kame Project. Am J Med. 2006 Sep;119(9):751-9.

11. Lau FC, Shukitt-Hale B, Joseph JA. Nutritional intervention in brain aging: reducing the effects of inflammation and oxidative stress. Subcell Biochem. 2007;42:299-318.

12. Prior RL, Gu L, Wu X, et al. Plasma antioxidant capacity changes following a meal as a measure of the ability of a food to alter in vivo antioxidant status. J Am Coll Nutr. 2007 Apr;26(2):170-81.

13. Wolfe KL, Liu RH. Cellular antioxidant activity (CAA) assay for assessing antioxidants, foods, and dietary supplements. J Agric Food Chem. 2007 Oct 31;55(22):8896-907.

14. Suh N, Paul S, Hao X, et al. Pterostilbene, an active constituent of blueberries, suppresses aberrant crypt foci formation in the azoxymethane-induced colon carcinogenesis model in rats. Clin Cancer Res. 2007 Jan 1;13(1):350-5.

15. Heinonen M. Antioxidant activity and antimicrobial effect of berry phenolics—a Finnish perspective. Mol Nutr Food Res. 2007 Jun;51(6):684-91.

16. Russell WR, Labat A, Scobbie L, Duncan SH. Availability of blueberry phenolics for microbial metabolism in the colon and the potential inflammatory implications. Mol Nutr Food Res. 2007 Jun;51(6):726-31.

17. Duffy KB, Spangler EL, Devan BD, et al. A blueberry-enriched diet provides cellular protection against oxidative stress and reduces a kainate-induced learning impairment in rats. Neurobiol Aging. 2007 May 22; [Epub ahead of print].

18. Casadesus G, Shukitt-Hale B, Stellwagen HM, et al. Modulation of hippocampal plasticity and cognitive behavior by short-term blueberry supplementation in aged rats. Nutr Neurosci. 2004 Oct-Dec;7(5-6):309-16.

19. Andres-Lacueva C, Shukitt-Hale B, Galli RL, Jauregui O, Lamuela-Raventos RM, Joseph JA. Anthocyanins in aged blueberry-fed rats are found centrally and may enhance memory. Nutr Neurosci. 2005 Apr;8(2):111-20.

20. Lau FC, Bielinski DF, Joseph JA. Inhibitory effects of blueberry extract on the production of inflammatory mediators in lipopolysaccharide-activated BV2 microglia. J Neurosci Res. 2007 Apr;85(5):1010-7.

21. McGeer PL, McGeer EG. Inflammation and neurodegeneration in Parkinson’s disease. Parkinsonism Relat Disord. 2004 May;10 Suppl 1:S3-S7.

22. Joseph JA, Denisova NA, Arendash G, et al. Blueberry supplementation enhances signaling and prevents behavioral deficits in an Alzheimer disease model. Nutr Neurosci. 2003 Jun;6(3):153-62.

23. Joseph JA, Carey A, Brewer GJ, Lau FC, Fisher DR. Dopamine and Abeta-induced stress signaling and decrements in Ca2+ buffering in primary neonatal hippocampal cells are antagonized by blueberry extract. J Alzheimers Dis. 2007 Jul;11(4):433-46.

24. Shukitt-Hale B, Carey AN, Jenkins D, Rabin BM, Joseph JA. Beneficial effects of fruit extracts on neuronal function and behavior in a rodent model of accelerated aging. Neurobiol Aging. 2007 Aug;28(8):1187-94.

25. McGuire SO, Sortwell CE, Shukitt-Hale B, et al. Dietary supplementation with blueberry extract improves survival of transplanted dopamine neurons. Nutr Neurosci. 2006 Oct;9(5-6):251-8.

26. Wilms LC, Boots AW, de Boer VC, et al. Impact of multiple genetic polymorphisms on effects of a 4-week blueberry juice intervention on ex vivo induced lymphocytic DNA damage in human volunteers. Carcinogenesis. 2007 Aug;28(8):1800-6.

31 for 21: Wordless Wednesday...Gluten Free Goodies

2011-10-26T06:16:00.000-07:00

If you're looking for yummy gluten free recipes, check out my sister's blog!

31 for 21: Glutathione

2011-10-25T14:18:00.000-07:00

Side note: There was a mis-link on the post from yesterday regarding the Down Syndrome awareness shirts. The correct link is on that post, but you can also order the shirts from here.

There was some recent discussion on the Einstein Syndrome list (I know I mention this list frequently, but it's such a beneficial list!) about Glutathione (GSH) and if it's beneficial or not.

Bottom line: Yes, it's very beneficial!

But, I'll get to more detailed information here :).

L-Glutathione is an amino acid, which is a tripeptide (made up from 3 other amino acids). It's also a potent antioxidant and helps with many different functions in the body.

One of the best articles I have ever read on Glutathione and it's many mechanisms is Glutathione: Systemic Protection Against Oxidative & Free Radical Damage, which you can view as a full text here.

Glutathione is essential in the body's antioxidant system. As one quote from the above study says,

Antioxidants are the body's premier resource for protection against the diverse free radical and other oxidative stressors to which it invariably becomes exposed. the antioxidant defense system is sophisticated and adaptive, and GSH is a central constituent of this system

Another interesting quote,

The consequences of sustained GSH depletion are grim. As cellular GSH is depleted, first individual cells die in those areas most affected [my note: we have lots of cell death already going on in DS]. Then zones of tissue damage begin to appear; those tissues with the highest content of polyunsaturated lipids and/or the most meager antioxidant defenses are generally the most vulnerable. Localized free-radical damage [my note: which is an issue in DS, due to low antioxidant levels & high oxidative stress] spreads across the tissue in an ever-widening, self-propagating wave. If this spreading wave of tissue degeneration is to be halted, the antioxidant defenses must be augmented.

Because Glutathione is low in people with DS and because it plays such a vital role in the immune system, it's important for us to try to help raise the levels of Glutathione in the body. Nutrivene-D does have Glutathione in it.

But, there is one tricky thing with GSH.

It's not very easily absorbed, although it can be absorbed. The best form of GSH is Reduced L-Glutathione. There are also some other forms of GSH called Lipsomal GSH, sublingual GSH and I believe there is also a Glutathione patch that people in the Autism community use. All of the above forms are supposed to be absorbed pretty well.

Methylcobalamin B12 also has been shown to help raise Glutathione levels in a study done by Jill James.

Someone may wonder about using N-Acetyl-Cysteine (NAC) to raise Glutathione levels. If you do much research, you will see this mentioned when talking about ways to raise Glutathione. From the research I have done, NAC should not be used in Down Syndrome. It has been shown to increase oxidative stress in people with DS and it also appears that it can cause leaky gut. Neither of which are needed in anyone, let alone someone with DS who is already struggling with increased oxidative stress and possibly gut issues.

Finally, one more interesting note about Glutathione from the above study,

Many pharmaceutical products are oxidants capable of depleting GSH [my note: Glutathione] from the liver, kidneys, heart, and other tissues. The popular over-the-counter drug acetaminophen [my note: active ingredient in Tylenol] is a potent oxidant. It depletes GSH from the cells of the liver [my note: which is where GSH is made & stored], and by so doing renders the liver more vulnerable to toxic damage.

Some may say it doesn't really matter if a drug such as Tylenol is used, if it's used in moderation. If you are comfortable giving your child Tylenol at various times, that's fine. It may be necessary at some times. We do not give Tylenol to O because of the concern that it would deplete already low Glutathione levels. There's more info on GSH and the Acetaminophen issue here.

*Don't forget to enter the book giveaway, which ends on November 2nd!*

31 for 21: Shirts & Bumper Stickers

2011-10-24T07:00:00.000-07:00

Several years ago, I think it's been 5 years or so, I made up a few Down Syndrome Awareness shirts and bumper stickers. Several of us have these shirts. I particularly like to wear the "My brother has Down Syndrome. He wasn't terminated. He's loved" shirt.

I don't know that I've ever shared these on the blog, but thought I would now!

A few of the shirts are pictured below. They are available in My Son, My Daughter, My Brother, My Sister, My Cousin, My Friend, My Grandson, My Granddaughter, My Niece & My Nephew.

The shirts can all be ordered from here.

A few of the bumper stickers can be seen here as well. The rest can be seen over here, where they can also be ordered.

31 for 21: Zinc

2011-10-23T07:00:00.000-07:00

As you saw with the my brother's vitamin protocol which I shared last week, he gets extra zinc every morning.

He takes Zinc in his Nutrivene-D, but ever since he was a one year old, he has been deficient in zinc. This is commonly seen in people with Down syndrome (I will share an article below), due to the overexpression of the Cu/Zn Superoxide Dismutase gene on the third 21st chromosome. So, we have been supplementing with 25-30mg/day extra of Zinc since that time. If we keep him on that dosage of extra zinc, he never gets TOO much zinc (it can be tested via blood work - with a zinc free needle!) and he is not deficient anymore. If we go any lower - 15 mg/day - then he becomes deficient again.

We typically use Nutricology Zinc Citrate or Swanson Zinc Citrate. Another really good form of zinc to use is Opti-Zinc (that's not a brand, it's a form of zinc).

Thiel R.J., Fowkes S.W. Can cognitive deterioration associated with Down syndrome be reduced? Medical Hypotheses, 2005; 64(3):524-532 (full text can be viewed here)

Abstract

Individuals with Down syndrome have signs of possible brain damage prior to birth. In addition to slowed and reduced mental development, they are much more likely to have cognitive deterioration and develop dementia at an earlier age than individuals without Down syndrome. Some of the cognitive impairments are likely due to post-natal hydrogen peroxide-mediated oxidative stress caused by overexpression of the superoxide dismutase (SOD-1) gene, which is located on the triplicated 21 st chromosome and known to be 50% overexpressed. However, some of this disability may also be due to early accumulation of advanced protein glycation end-products, which may play an adverse role in prenatal and postnatal brain development. This paper suggests that essential nutrients such as folate, vitamin B6, vitamin C, vitamin E, selenium, and zinc, as well as alpha-lipoic acid and carnosine may possibly be partially preventive. Acetyl-L-carnitine, aminoguanidine, cysteine, and N-acetylcysteine are also discussed, but have possible safety concerns for this population. This paper hypothesizes that nutritional factors begun prenatally, in early infancy, or later may prevent or delay the onset of dementia in the Down syndrome population. Further examination of this data may provide insights into nutritional, metabolic and pharmacological treatments for dementias of many kinds. As the Down syndrome population may be the largest identifiable group at increased risk for developing dementia, clinical research to verify the possible validity of the prophylactic use of anti-glycation nutrients should be performed. Such research might also help those with glycation complications associated with diabetes or Alzheimer’s.

Oral zinc supplementation in Down's syndrome subjects decreased infections and normalized some humoral and cellular immune parameters.

Abstract

The effect of 4 months of oral zinc supplementation on immune functions in non-institutionalized young female and male Down's syndrome (DS) subjects was studied. Along with plasma levels of zinc, the immune parameters, measured before and after zinc treatment, were plasma levels of thymulin, the percentage and the absolute number of circulating white blood cells, total lymphocytes, lymphocyte subpopulations, the mitogen-induced lymphocyte proliferation, the production of interleukin-2, and the activity of stimulated granulocytes. Some immune parameters were significantly influenced by zinc treatment. In particular, a normalization of thymulin and zinc plasma levels were found in these subjects after zinc supplementation. At the end of the clinical trial, in vitro lymphocyte proliferation and polymorphonuclear activity also increased and reached normal values. Zinc administration exerted a positive clinical effect in these children, since a reduced incidence of infections was found.

The Role of Zinc in Down’s Syndrome (view the full text here)

Summary

This paper considers a single nutrient, zinc, and its place in supporting people with Down’s syndrome. The importance of zinc is suggested by the many disease states found in DS that have also been observed in subjects with zinc deficiency. These include diabetes mellitus, dwarfism, hypogonadism, atherosclerosis, vitamin A deficiency night blindness, cirrhosis of the liver, myeloid leukaemia (Milunsky, 1970), and hyperthyroidism and hypothyroidism (Napolitano et al, 1990). Fabris et al (1993) cite the importance of zinc in the homeostatic networks found to be altered in DS, namely nervous, neuroendocrine and immune, and their interrelationship, plus a reduced turnover of this mineral, leading to the hypothesis that zinc deficiency could be implicated in at least some of the DS phenotype.

“Zinc forms part of the composition of at least 160 different enzymes. Indeed, zinc is the most widely used mineral in enzymes” (Graham and Odent, 1986).

It is vital for protein, essential fatty acid and carbohydrate metabolism, and for DNA synthesis, and can be used to detoxify lead and mercury (ibid.). The body only has a small pool of biologically available zinc, and a rapid turnover, meaning that deficiency signs appear very quickly (Passwater and Cranton, 1983).

31 for 21: Thoughts On Loss Of Neurons

2011-10-22T07:30:00.000-07:00

A few weeks ago, there was some discussion on the Einstein-Syndrome list regarding statements made by the Changing Minds Foundation regarding the loss of neurons.

Because of this quote (namely the bolded portion) from the CMF website,

"Problem: Loss of neurons in the hippocampus: Down syndrome loses 50% of their neuronalstructure by 6 months old. This is an insurmountable problem.
The University Of Maryland School Of Medicine treatedDown syndrome mice with prozac for 24 days (2006). It increased neurogenesis(the formation of new nerves) to a normal level. This is like increasing the hardware on yourcomputer. It allows you to run more complicated software. In fetuses with Downsyndrome, neurons fail to show normal dendritic development, yielding a"tree in winter" appearance. This developmental failure is thought toresult in mental retardation.""

I did some researching and wrote up a response to this, which I thought I would share below. From what I recall, CMF did change some of the wording on their site to make sure there was no confusion.

I am not a CMF protocol expert by any means, but Ithought I would share what I could find in doing some researching on this.

This study, "Neurogenesis impairment and increasedcell death reduce total neuron number in the hippocampal region of fetuses withDown syndrome" can be seen in full text here: http://bit.ly/ok9kuN. If anyone would like aPDF of the full text, just let me know, as I have it downloaded and can emailit.

A quote from the abstract: "Results show reducedneuron number in the DS hippocampal region and suggest that this defect iscaused by disruption of neurogenesis and apoptosis, two fundamental processesunderlying brain building."

While I don't understand all of the terminology in thisstudy, here are a few interesting quotes:

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"In all structures, however, DS fetuses had asignificantly smaller number of neurons compared with controls (Figure6D)."

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"Comparison of the density of apoptotic cells,evaluated with either method, in control and DS fetuses showed that DS fetuseshad a larger density of apoptotic cells both in the granule cell layer (Figure8B,E) and in the ventricular zone of the hippocampus and PHG (Figure 8C,H)compared with control fetuses."

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"The current study in DS fetuses demonstrates forthe first time a severe hypocellularity in all areas forming the fetalhippocampal region and that neurogenesis impairment underlies this defect.

These findings allow us to trace back to earlydevelopmental stages the hippocampal hypotrophy of the adult DS brain. Thisprecocious atrophy may explain the early impairment of hippocampus-relatedmemory functions observed in children with DS (7, 50)."

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"Although hypocellularity in the DS brain waspreviously documented in several studies, it was not known whether this defectwas caused by a neurodegenerative processes or to decreased neuron production.With our investigations we demonstrate for the first time that in DS subjectsneurogenesis is severely impaired during early phases of brain development. Theensemble of current and previous (10) data suggests that neurogenesisimpairment may be a generalized feature of the DS brain and underlie thewidespread brain hypotrophy that characterizes DS subjects starting frominfancy."

Some of my thoughts: I can't find a study which saysthere is a 50% loss of neuronal structure by 6 months old either. I just didquite a bit of searching, although I'm sure I could've missed it if I didn'tsearch for the right thing ;). I'd be glad to see it if it's there. Anyone havethe reference for that?

From research I have done over the years, I know there islack of neurogenesis (which some of the above quotes show) and increasedapoptosis (programmed cell death) that starts from before the child is born.The above study also shows that there is a marked difference in the number ofneurons babies with Down syndrome have. If the child starts out with 35%-55%less neurons than a non-T21 child (the above study mentioned those numbers incertain measurements/areas), then where is the idea of a 50% loss by the timethe child is 6 months old?

31 for 21: Glyconutrients

2011-10-21T12:55:00.000-07:00

There are so many supplements that fly around in the Down Syndrome world. So many different things people try. Some of them are helpful. Some of them are good. Some of them are wacky. Some of them are not helpful. Some are just plain off the wall!

I hope to go over a few more of these as well.

One supplement which people use at times and is brought up often, is Glyconutrients.

First off, the term "Glyconutrients" refers to 8 essential sugars. There are several groups out there which claim you need these "8 sugars" to proper health. One of the most prominent being Mannatech, which is a Multi-Level Marketing company.

Personally, I believe Glyconutrients are a big hype, that isn't worth giving as a supplement. I've looked at it more than once over the years.

The biggest clincher for me, though, to really questionglyconutrients for people with DS, is that they are just a bunch of sugars.Sugars are pro-oxidant. People with DS are already battling a pro-oxidant state& lots of oxidative stress (due the 3rd chromosome). Therefore, it makes me question why or how itcould be good to supplement sugars. They may appear to be beneficial at themoment, it just makes me wonder what kind of impacts they will really have downthe road. Oxidative stress & a pro-oxidant state = mental retardation, alzheimer's disease, cancer, leukemia, and all sorts of bad things.

When I researched glyconutrients, I searched high and lowfor the research which Mannatech claims is out there to show that there arethese "8 essential sugars" that you body needs and I couldn't find anything. To this day, I cannot find any unbiased (or even biased, because there is a lot out there!) research which shows you need these sugars.

Glyconutrients are found in just regular fruit & vegetables that your child may eat, so why supplement with sugars that are pulled out of this?

31 for 21: 2011 Buddy Walk!

2011-10-20T07:00:00.000-07:00

The DSAT Buddy Walk was this past Sunday, October 16th. It was lots of fun and everyone had a good time.

This year the walk was at a bigger park with a live band (Samantha Rose....who is an excellent singer). Samantha's little sister happens to have Down Syndrome!

Here are a few pictures from the walk:

Some of our friend's who were a sponsor at the walk (they did ALL the banners, signs, bookmarks in the registration bags, etc).

Getting a group picture taken!

The stage....

Getting the Borden cow mascot!

My sister and the police man and his dog that's at the buddy walk every year. Normally my sister has her big bullmastiff boy with her too, but it was too warm to bring him Sunday.

Playing on one of the bounce houses

Everyone lining up to walk

The start of the walk (led by the police)

Then the bag pipe band

And the little race cars

Then the self advocates

The long line of the walk

Sitting around after the "long" walk

Waiting in line for O to get his Buddy Walk patch.

The 2011 Buddy Walk Patch!

Now time to clean up!

Talking to the singer, Samantha Rose.

Playing with the bundle of balloons that we took down from the start of the walk.