Green Tea Extract: EGCG & The Benefits It Has for Down Syndrome

EGCG, which stands for Epigallocatechin-3-gallate, is an extract from Green Tea. EGCG is the major polyphenolic compound found in green tea. Green Tea has been known to have lots of health benefits for awhile, but about two years ago it came to the attention of people in the Down syndrome world.

I’ve been watching it over the last couple years. But, when I saw some new research come out about EGCG a couple weeks ago, I decided it was time to jump on the bandwagon and start supplementing with EGCG. As usual though, I needed to have all my ducks in a row, so to speak, have all the research and facts lined up, so I can definitively know why we are using EGCG. Of course, this helps others as well, which is also why I’ve typed it all up.

Original research with EGCG that sparked the attention of those in the DS world was research for Alzheimer’s disease. Let’s look at some of this initial research to lay the groundwork.

EGCG prevents certain apoptotic (pre-programmed) cell death through inhibiting the elevation of Abeta (a protein involved with Alzheimer’s and also involved with DS) via inhibition of beta and gamma-secretases. This, therefore, reduces neuroinflammation that’s associated with the progression of Alzheimer’s disease (1). We also know that neuroinflammation is involved with DS.

Alzheimer’s Disease & Down syndrome have the increased amyloid-beta protein (Abeta), which causes plaques & tangles in the brain. The processes & increases which Abeta cause are reduced by EGCG. EGCG improves memory function, as well as reducing harmful levels of increased Abeta and its associated functions (2).

So, we have EGCG which prevents cell death, reduces the elevated levels of amyloid beta, reduces Beta Secretase expression, reduces APP (Amyloid Precursor Protein – overexpressed in DS) and reduces neuroinflammation. All of this will help improve neurogenesis. That’s all great stuff, but there’s still more amazing benefits to EGCG – specifically for Down syndrome.

There’s an annoying little gene that is over expressed in Down syndrome called – get ready for this long word - dual-specificity tyrosine-(Y)-phosphorylation regulated kinase 1A, also known as DYRK1A. We’ll use the abbreviated word, since it’s a lot easier to say and remember! DYRK1A causes cognitive & learning impairments in DS and is highly involved in the neurodegenerative process in the Down syndrome brain (3-6). It also plays a role in the Alzheimer-like pathway that is seen in Down syndrome (3).
The good thing about DYRK1A is research has shown that it can be inhibited. If DYRK1A is inhibited, then the harmful effects of the gene won’t be able to function.  Remember, the over expressed aspect of this gene is what is the problem – not just the gene in and of itself.

EGCG is a safe DYRK1A inhibitor and there has been very successful research done in individuals with Down syndrome. The Jerome Lejeune Foundation has a program designed to research what will inhibit this gene. Professor Mara Dierssen, from the Jerome Lejeune Foundation, has had a very successful clinical trial (10) with individuals with Down syndrome using EGCG. Professor Dierssen is also now recruiting for a second clinical trial (11).

EGCG is also a GABA antagonist (7-9). An antagonist is a substance that acts within the body to reduce the physiological activity of another substance. Gamma-aminobutyric acid (GABA) is an inhibitory neurotransmitter.

Now that we have the definitions down, let’s get on to the problem with GABA. GABA is a good thing when it is not in excess, because it creates the perfect balance between neuronal excitation and inhibition to allow for efficient learning. But, there appears to be too much GABA-related inhibition in Down syndrome and therefore it “turns off” too many neurons in the brain and makes it more difficult to process information.

So, EGCG being a GABA antagonist, namely blocking the GABA(A) receptor (recombinant alpha1beta2gamma2L GABA(A) receptor), is a very beneficial thing for individuals with DS.  Having an antagonist which can reduce GABA, will greatly help the brain and learning in Down syndrome.

Mitochondrial dysfunction has been well established in Down syndrome. EGCG prevents oxidative deficit in the mitochondria, reduces oxidative stress and actually promotes mitochondrial biogenesis in Down syndrome (12).  This is amazing, because there has never before, to my knowledge, been a way to efficiently combat the mitochondrial dysfunction in Down syndrome.

EGCG is also an iron-chelator, which can be beneficial for individuals with DS, due to the oxidation issues that come with high levels of iron. Now, if an individual with DS already has low levels of iron, this would be something to keep in mind and monitor the iron levels while supplementing with EGCG.
So, to recap, EGCG helps improve memory, reduce the learning impairment seen in individuals with DS, reduce oxidative stress, is a potent antioxidant, promotes mitochondrial biogenesis, is a GABA antagonist, is an iron-chelator, inhibit DYRK1A, prevents cell death, reduces neuroinflammation, reduces Beta Secretase & APP expression, and causes a reduction in Abeta and the problems it causes.

With all this, one may ask, is there anything negative about EGCG? There is one thing to keep an eye on, but I wouldn’t necessarily call it a “negative.”

EGCG inhibits or reduces DHFR, which is an enzyme involved in the methylation and folate cycle. So, ultimately, it may reduce folate. We already know that folate is reduced in Down syndrome and many people use additional supplements to increase folate in Down syndrome. As long as a sufficient amount of folate or folinic acid is supplemented, I would not be too concerned about this aspect of EGCG. There are some other questions regarding DHFR and some genes that it is involved in regulating – whether it is good to stop that or not.

But, for now, look at all the benefits for EGCG above and think about all the problems which DYRK1A (and others) cause. The answer is simple for me, at the moment: Supplement with additional folate/folinic acid, or supplements to support the methylation cycle, as you are using EGCG.

Now, the question comes down to, what is the recommended dosage and what are the best brands.

The recommended dosage is 9mg/kg (kg=2.5lbs) of EGCG. This is the dosage that the clinical trials in Down syndrome are using. This is also the dosage that many parents are using with their children.

One important note on the dosage: that is NOT 9mg/kg of Green Tea. This is important to note, as most products will be Green Tea that you are giving. You will have to calculate the amount of EGCG in the product to give the correct amount. You will be giving more Green Tea, but the recommended dosage of 9mg/kg.

Because EGCG is still in the early stages of use and development, it can be a little tricky to get a brand that is bioavailable. A good brand of just EGCG is Teavigo. The problem with Teavigo is that it is not in a liposomal encapsulation (a fatty acid), to make it bioavailable enough to cross the blood-brain-barrier (which is where it is needed).

GreenSelect Phytosomes made by a company named Indena, has been found by some to be a good bioavailable form of EGCG. This has the phospholipid bound to it. There are several companies which use GreenSelect as their base. One example is VitaCost GreenSelect. Another example is Swanson's Ultra GreenSelect Green Tea Phytosome.

Another liposomal brand which some families use with their children is Enzymatic Therapy Green Tea Elite with EGCG. You can view it here and here.

We will be using the Swanson's Ultra GreenSelect Green Tea Phytosome, as is mentioned above. The cost is $14.99 for 60 capsules. Each capsule contains the following:

GreenSelect® Phytosome™

(green tea extract Camellia sinensis leaves/ Glycine max soybeans) -600 mg

Standardized to:  

19-25% polyphenols - 114-150 mg  

13% epigallocatechin 3-0 gallate (EGCG) - 78 mg

The dosage can be a little tricky with the GreenSelect Green Tea. VitaCost's GreenSelect Extract which is mentioned above contains the following per 1 capsule:

“Green Tea Extract (Camellia sinensis leaves/Glycine max soybeans) [standardized to 60% polyphenols 180mg, 40% epigallocatechin 3-0 gallate (EGCG) 120 mg]”

Originally we were going to use the VitaCost brand. But, Richard on the DSTNI list pointed out that VitaCost doesn't calculate the dosage accurately. Yes, it can be a little confusing. But, they miss the dosage part of the fatty acids in the mix. So, the dosage above for Swanson's GreenSelect is accurate and not as confusing. The VitaCost dosage is not accurate.

For a child that is O’s weight – 50 lbs – that would calculate out to 180mg/day of EGCG. With the Swanson GreenSelect EGCG, that would mean approximately 2 & 1/2 capsules. With the VitaCost brand, the dosage is almost doubled.

So, there’s a LONG explanation of why EGCG is good and everything that goes with it. I will keep notes of how O does on the EGCG and any changes we see.

*Note (Update 8/20/15): I realized that it is not mentioned about giving the child the 9mg/kg dosage of EGCG twice a day. That IS the recommended thing to do. It is best to give the 9mg/kg dosage TWICE a day, as then it is in child's body at all times. We do this with O. Some have had problems giving the dosage at night, because it has kept their child awake. Others have not had this problem. We have not experienced this problem at all.

References:
1. Brain Res. 2009 Jan 23;1250:164-74 (-)-Epigallocatechin-3-gallate prevents lipopolysaccharide-induced elevation of beta-amyloid generation and memory deficiency. Lee YK, Yuk DY, Lee JW, Lee SY, Ha TY, Oh KW, Yun YP, Hong JT.
2. Nutr. 2009 Oct;139(10):1987-93. Green tea (-)-epigallocatechin-3-gallate inhibits beta-amyloid-induced cognitive dysfunction through modification of secretase activity via inhibition of ERK and NF-kappaB pathways in mice. Lee JW, Lee YK, Ban JO, Ha TY, Yun YP, Han SB, Oh KW, Hong JT.
3. Ageing in Down Syndrome: DYRK1A As a Candidate Gene for Cognitive Decline
http://www.sciencedirect.com/science/article/pii/S2171974808700394
4. Dyrk1A Overexpression Inhibits Proliferation and Induces Premature Neuronal Differentiation of Neural Progenitor Cells. http://www.jneurosci.org/content/30/11/4004.full
5. DYRK1A in normal brain development and Down syndrome. http://www.nature.com/nrn/journal/v13/n12/fig_tab/nrn3314_F2.html 
6. Green Tea Polyphenols Rescue of Brain Defects Induced by Overexpression of DYRK1A http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0004606
7. http://sydney.edu.au/medicine/pharmacology/adrien-albert/images/pdfs/RefsPDFs/367.pdf 
8. Reducing GABAA α5 Receptor-Mediated Inhibition Rescues Functional and Neuromorphological Deficits in a Mouse Model of Down Syndrome. http://www.jneurosci.org/content/33/9/3953.full
9. Implications for treatment: GABAA receptors in aging, Down syndrome and Alzheimer's disease. http://www.ncbi.nlm.nih.gov/pubmed/21388375
10. http://clinicaltrials.gov/ct2/show/NCT01394796?term=EGCG+and+down+syndrome&rank=1
11. http://clinicaltrials.gov/ct2/show/NCT01699711?term=EGCG+and+down+syndrome&rank=2
12. Epigallocatechin-3-gallate prevents oxidative phosphorylation deficit and promotes mitochondrial biogenesis in human cells from subjects with Down's syndrome http://www.sciencedirect.com/science/article/pii/S092544391200302X
13.  A few helpful websites:
https://sites.google.com/site/superdownsyndrome/supplements/green-tea-extract
http://changingmindsaboutdownsyndrome.blogspot.com (search EGCG)
http://dsdaytoday.blogspot.com/2011/03/egcg-green-tea-extract.html
http://dstoner.net/Math_Science/Downs.html

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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.



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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.

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"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.



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Afraid of Change?

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.




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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.

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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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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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Is the Supplement Causing This Problem?

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?



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

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.



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How To Choose What To Give?

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.



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

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!



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

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 :).



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31 for 21: History of Targeted Nutritional Intervetion

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]




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31 for 21: Glutathione

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!*

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