Saturday, December 31, 2011
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!
Friday, December 30, 2011
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
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
1 1/2 cups milk
1 cup vegetable oil
1 1/2 teaspoons vanilla extract
1 1/2 teaspoons almond extract
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.
Thursday, December 29, 2011
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.
Wednesday, December 28, 2011
Friday, December 23, 2011
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!
Posted by Qadoshyah at 11:37 AM
Sunday, December 18, 2011
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):
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!
Saturday, December 17, 2011
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.
Friday, December 16, 2011
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.
Tuesday, December 13, 2011
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?
Monday, December 12, 2011
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.
Sunday, December 11, 2011
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:
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 :)!
Wednesday, December 7, 2011
Tuesday, December 6, 2011
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.
Sunday, December 4, 2011
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 treeA polysaccharide is a carbohydrate/sugar, which the body can have a hard time digesting.
(Larix species) and comprised of approximately 98 percent arabinogalactan.
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?
Saturday, December 3, 2011
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.