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

Tweet

"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.



Tweet

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.




Tweet

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?

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.




Tweet

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.

Tweet

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!



Tweet

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.



Tweet

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?



Tweet

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.



Tweet

To Wait For Research or Not?

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

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

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

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

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

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

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

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

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

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

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

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



Tweet