Showing posts with label supplementation. Show all posts
Showing posts with label supplementation. Show all posts

Monday, October 15, 2012

31 for 21: Changes to New Downs

You may remember me posting about a new vitamin formulation for Down syndrome about a year ago that was called New Downs. You can view that post here.

I still have the same concerns and thoughts as I did then. But, I received an email back in the spring that they had made some changes to their formula. This is what they changed:



New flavor - Mixed Berries
addition of trimethylglycine
addition of NAC (N-acetyl-cysteine)
decreased iron content
addition of lipoic acid.


I am glad to see the addition of TMG (TriMethylGlycine), as that is essential for individuals with DS. It is also nice to see decreased iron content (although I still feel it shouldn't be in it at all) and the addition of lipoic acid.

But, the addition of NAC causes me concern. There are several issues with NAC. I briefly mentioned the concerns with NAC here, which were:
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.
I will go into more detail about the concerns with NAC in a blog post tomorrow.


Country Girl Designs

Wednesday, October 10, 2012

31 for 21: Re-blog: Through Uncharted Waters

Well, my mom was looking through old blog posts about Longvida Curcumin. And she was wondering when we started O on it and when I first blogged about it. It's amazing how fast the years have gone by.

This whole year, I've been thinking it's just been a year and a half or so since we started using Longvida Curcumin with O. But, looking back at blog posts, it was not May of 2011...no, it was May of 2009 that we started using Longvida Curcumin. Wow, it's been THREE years and 5 months since O started taking Longvida Curcumin. Simply amazing. It feels like just yesterday that I was researching all the details of LC, where to get it from and all of that.

So, I thought it would be good to re-blog a blog I had written in November of 2009. It was titled "Through Uncharted Waters" and was in response to a letter I received from a professor of Medicine and Neurology at UCLA. He had questions and was cautioning about us using Longvida Curcumin with O, because he had DS and was young.


I received an email today from Greg Cole, a professor of Medicine & Neurology at UCLA. He works with Sally Frautschy on Curcumin and other things. He was emailing in regards to Longvida Curcumin and our use of it.

His email was a word of caution. A caution to realize that we are "experimenting" with Longvida Curcumin, as it is not clinically proven to help individuals with DS. There have been no clinical trials done on it's safety & use in people with DS. This is a great concern and word of caution and I totally understand where he is coming from and agree.

Whenever we use a supplement that is not clinically proven in people with DS, we are going through uncharted waters and "experimenting." We always need to be cautious and aware of what we are doing. Aware of any changes that are seen with a certain supplement, be it good or bad. And aware of the dosage we use, whether it is too high or too low, or just right.

We've been on the path of using various supplements and "experimenting" with Osiyyah since he was 8 months old (he's 4 1/2 years old now). The way we feel, is that we have to do everything we can for him. Even if something has not been proven in clinical trials. If the research looks promising, is something that looks like it'll benefit him, and as best we can tell is safe to give him, we give it a try. Of course we don't jump into giving him anything unless we have thoroughly researched and am convinced that it is safe & good to try.

It would be wonderful if clinical trials are done, but we can't wait for clinical trials to be done. My brother's life & understanding is on the line. He needs the help right now. This is why we, and many other families of children with DS, take the initiative to use certain supplements well before they have gone through clinical trials.

If we were to wait until something was proven to help children with DS, it would be YEARS and the most crucial time of Osiyyah's development would be gone. I want to do all I can to help my brother reach his fullest potential. That's what I determined from the time he was born and we knew he had DS. To do any less, would not be beneficial to him.

I am so incredibly thankful that we have taken many out of the norm, against the grain steps, because Osiyyah has progressed so well and benefited from them so much. I am convinced he would not be where he is at today had we not started this journey of research back when he was 8 months old. I know that because he visually, before our eyes changed and was a different child, when we started him on the first supplement back then. Granted, that first supplement is Nutrivene-D. But, still, there are MANY people who advocate not to use that supplement, because it is not "clinically proven." If we would've listened to many of the "professionals" in the DS world, we would not be giving Nutrivene-D. I'm so thankful we didn't listen to them.

There is so much that many families use with their kids with DS that are not clinically proven in DS. But, why are they used by so many families? Because someone took the initiative and stepped out of the box and decided to give that particular thing a try. Those who have taken the initiative into uncharted waters have benefited many families. To name a few, Dr. Turkel, Dixie Lawrence, Dr. Leichtman, Teresa Cody, and others.

Our family will always be thankful for the work of people like Dixie Lawrence & Dr. Leichtman in regards to Nutrivene-D. It changed Osiyyah's life. He is not the boy he was before Nutrivene-D.

Or mom's like Chris Hempel, whose twin daughters have Niemann-Pick Type C disease. That's how we found out about Longvida Curcumin. Longvida Curcumin has changed Osiyyah's life also. He can communicate & understand so much more than he was able to 5 months ago. It's amazing.

We will gladly continue to go through uncharted waters and step out of the box to be able to benefit my wonderful little brother and others with Down syndrome.


Country Girl Designs

Thursday, December 29, 2011

"Panic" To Stop the Down Syndrome?

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.


Country Girl Designs

Sunday, December 18, 2011

Helping Sinus Infections

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!


Country Girl Designs

Saturday, December 17, 2011

Using Evening Primrose Oil, Is it Good or Bad?

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.



Country Girl Designs

Tuesday, December 13, 2011

Fats & Oils

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?

Sunday, December 11, 2011

Boosting The Immune System & Dealing with Colds

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 :)!


Country Girl Designs

Thursday, December 1, 2011

Trienza Enzymes vs Nutrivene Enzymes

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.

Country Girl Designs

Tuesday, November 29, 2011

Do Insurances Cover Supplements?

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!


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Friday, November 25, 2011

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

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.


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