Jett's Supplement List

Happy, healthy Jett at 3 years old

Below are the supplements that Jett currently takes (it does fluctuate) to combat the effects of the 21st chromosome. Please click the links for explanations as to why, how, our experience, products etc. 

You may notice that my list is different than what is suggested in the Changing Minds Foundation website (This protocol is outdated and I don't agree with the pharmaceuticals suggested), NuTriVene's Complete Program (minus the folic acid, Piracetam, Aricept and Namenda) or LifeExtension's Treatment of DS Summary (minus the glutamine, for most kids, but Jett actually takes it). This is because the more I learn, the more I am able to pick and choose what works best for Jett.





Common Questions 
 
Where do I start?

It may be a good idea to start with a Down syndrome specific multivitamin that has been formulated by experts. All of our children have the same diagnosis, but none of our children exhibit exactly the same symptoms. So it makes sense that while many of our kids may need many similar nutrients, which a multivitamin will cover, each child's perfect blend of nutrients will be unique to him/her. So, consider starting with a multivitamin and then add supplements as needed. Some of these multivitamin companies will customize the vitamin dependant on lab results of your child as well.

How do I know what my child needs?

Each of our children is unique, so your list will eventually evolve according to your child's cues as well. There are several tools for making these decisions:

1. Get Lab Tests

2. Check for Signs of nutritional deficiency

3. Get muscle testing and or tested from a zyto machine technician

4. Compare similar children's protocols at Autism360.org

5. Keep track of your child symptoms.

You can muscle test your child to see if he can tolerate supplements that you are interested in before he even tries it. Muscle testing is available at some chiropractors, naturopaths, NAET practitioners and integrated medicine practitioners. Here's a youtube video that explains how to muscle test. This technique has worked well for Jett. 

If your child muscle tests negative for an item that you feel would benefit him, you can use NAET (Nambudripad's Allergy Elimination Technique) to "clear" the "allergen" so that your child can tolerate it. NAET has worked well for Jett. Kristen Morrison of Naturally Better Kids swears by this technique for her child with Down syndrome.

Email me and I will send you a document that will help you keep track of dosage, side effects and other observations specific to your child. The more information you gather on your child, the better you can decide what is and isn't working. 

To compare what works for other kids who have similar strengths and symptoms as your child, you can set up a free, secure profile at Autism360.org. And no, your child doesn't have to have autism to benefit from this secure, useful, interactive database.

 
How can I support my child's intake of nutrients?

You'll want to make sure that your child is best able to metabolize these nutrients. If your child has untreated Celiac disease (more common in DS than is realized, in my opinion) or simply a sensitivity to gluten, you may want to consider avoiding gluten (found in wheat products). Gluten can irritate the fine hairs in the digestive system so much so that the hairs can fall out and cause your child's food to not be properly metabolized. So your child may be eating great foods, but isn't getting the nutrients from it because it just slides quickly by, instead of being caught in the fine hairs and slowly guided through the digestive tract. I'd hate for you to be spending a lot of money on supplements when your child can't even use them properly. Jett is gluten free to aid in digestion.

Milk can cause block your child's ability to properly process folate (in addition to other negative effects like congestion). You may want to consider avoiding milk. Jett is dairy and casein free as well. See Cerebral folate deficiency in Down syndrome for details.


Jett's Supplement List

Consider introducing a new thing every 7-12 days or longer (I introduce only one thing a month now) and don't introduce anything else new (food/drink) during that time. Note any behavior, sleep, bowel movement and skin changes. Again, contact me and I will email you a chart to make it easier for you to track your child's reaction. These simple rules will help you to best see how each item effects your child. 

Why isn't a multivitamin on this list?

Whole desiccated porcine thyroid (Nathroid) (for thyroid support)

Curcumin Longvida (for better speech, Alzheimer prevention and more)

Vitamin B12  (for methylation cycle support)

Folinic Acid/Folate as calcium folinate or l-5-methyltetrahydrofolate 

Fish Oil  dose is 8mg/kg/day

EGCG (green tea extract) (for cognition, memory and more) 

Trans-Resveratrol (increases muscle tone, helps sleep, antioxidant, supports immune system, boosts memory/cognition)
 
Mito Q brand of Coenzyme Q10 (antioxidant and more)  

Magnesium (for teeth grinding, restless sleep and more)  

Zinc (for growth, thyroid support, restless sleep and more) 

Bacopa Monnera (for adrenal support, stops stimming, calms)

NeuroProtek (for better social skills, speech and more) 

Ashwagandha (for sleep, adrenal support, cognitive support) 

Vitamin D 3 (for sleep, immunity and more)

Vitamin MK-7 (anti-aging and more)
 
Probiotics  (for digestion, immunity and more)

Vitamin C as Camu camu (for iron absorption, constipation and more)

Coconut Oil  (help keeps a steady stream of energy for the brain and more)

L-carnosine  (for protection against metals and more)

Fermented cod liver oil
L-tyrosine (for thyroid support and more)

L-ornithine (for growth and more. Only in AM, keeps him up in PM.)

Acetyl -L Carnitine (ALC) 

Molybdenum (against ammonia and more)

Lithium Orotate (for neurogenesis, teeth grinding, sound sensitivity)

Milk thistle  (for liver support)

Cognitex with Brain Shield


Reishi (supports adrenal, helps correct hormonal and neurotransmitter deficiencies and imbalances, can contribute to a clear and focused mind.)

Frankincense (on feet/base of skull) For growth hormone stimulation, brain support and more.

Biotin (had "cradle cap", which shows he needs it)

Zeaxanthin (eye support)

Astaxathin (antioxidant, eye sight and more)
 
Choline, citicholine or sunflower lecithin (instead of BodyBio PC  because of the soy and ethanol in BBPC)

Borage Oil (Hair analysis showed he needs this.)

D-ribose (restores cellular energy in heart and muscle tissue)

Creatine (gives energy, reduces cognitive decline. AA panel showed Jett needed this.)

L-glutamine (supports gut and immune system cells, energy source in mitochondria, needed for optimal nucleotide biosynthesis and protein synthesis. AA panel showed Jett needed this.)

L-serine  (Makes up nerve proteins and brain coverings. AA panel showed Jett needed this.)



colostrum  (immunity support)

temporarily off: 
Wild Blueberry Extract (for neurogenesis and more-- still taking in Cognitex)
Digestion support (no longer needed since on proper thyroid)
Gingko Biloba  (for sleeping through the night, cognition and more)
TriEnza Enzymes (for better digestion)

Cal-Mag Butyrate
Evening Primrose Oil
Rhodiola Rosea
BodyBio Balanced Oil

Probably permanently off: 
TMG  (against ammonia and more) NAET showed he didn't need this.
Piracetam (Had little effect on him and NAET showed he didn't need it.)

Astragalus (for growth, pituitary gland and more. NAET showed not needed.)
Royal Jelly  (for neurogenesis and more. NAET showed not needed.) 
BodyBio PC  (Using something different has soy in it.)
l-tryptophan (for getting to sleep and more. NAET showed not needed.)
 

I found a pill cutter/crusher in one that's very easy to use. I get mine from American Science & Surplus. You can get it online for $3.75 at www.sciplus.com/search.cfm?utm_sour... Or go to sciplus.com and enter "splitter/crusher pill box."

Related Posts

Doctors' Presentations on Biomedical Issues in Down Syndrome
Cerebral folate deficiency in Down syndrome
Prenatal Supplementation
Royal Jelly for Neurogenesis
CMF Mini-Conference Near You
15 Things A New Parent Should Know
Why Rhodiola Rosea?
Cure for Down Syndrome?
Fermented Cod Liver Oil
Coconut Oil Info and Recipes
Fats & Oils
EGCG Green Tea Extract
Longvida Curcumin
Changing Minds Foundation Protocol
Gingko: The Hows and Whys for Down Syndrome
Why Milk Thistle?
Folic Acid Cut Alzheimer’s Risk in Half
L-tyrosine: Building Block for Neurochemicals
Astragalus Promotes Growth Hormone Release
Vitamin C Supports the Brain and Eyes
Why supplement and monitor zinc?
The Importance of Magnesium
NeuroProtek
Lab Tests: Which to Request, What they Mean and How to get a good draw 
List of Supplements Related to T21

EGCG Green Tea Extract For Memory

I had been giving Jett green tea extract for a while and didn't see any change. Turns out, I had missed the fact that the dosage on the bottle was for TWO capsules. So, I was only giving him a half a dose for the longest time (5mg/per kg) twice a day! But, once I increased the dosage to 10mg/per kg twice a day, I saw huge increases in cognition in just three days. At age 3, he went up from an Auditory Processing level of 2-3 to a solid 3. (For explanation of AP, see My Strategy for Good Behavior.) I took him off for a while and when I restarted, he went from 5 word sentences to using his first 6 and 7 word sentences in a couple of days as well! It's not just Jett who responds positively to this supplement. I know a lot of moms who are seeing great benefits from giving it to their child with Down syndrome. Needless to say, I'm a big fan. At five years old, Jett weighs 32 lbs and gets one capsule of Teavigo twice a day. For those of you who don't know Jett, at age 4, he tested as reading on a 5th grade level and his speech is very good.

Learn more about Green Tea Extract in the Down syndrome population at the 2016 Down Syndrome Innovations Conference on September 16-17 in Little Rock, Arkansas.  

Overview of Benefits

Green Tea, and especially the component epigallocatechin gallate (EGCG), provide potent neuroprotective effects to the brain as well as improved learning abilities. But I prefer supplementing with green tea as a whole rather than just the EGCG since studies show the benefits are greater in the whole, more synergistic form. Other parents agree that their child does better on the whole extract as well.

Source: http://www.memoryaction.com/content/Ingredient_Research.htm

Improved memory learning ability. In laboratory animals, administration of green tea catechins (including EGCG) showed improved spatial memory and learning ability of the animals in maze navigation studies. The animals receiving the green tea had much less oxidative stress activity in the hippocampus (memory) area of the brain. According to the researchers, the improved memory is most likely due to significant antioxidant protection provided by the green tea.

Neuroprotective for neurogenerative diseases. EGCG has a protective effect on neurons. One study showed the ability of EGCG to protect dopaminergic neurons against a herbicide known to be toxic to these cells. Further studies have shown that EGCG is protective to neurons injured due to neurodegenerative diseases such as Alzheimer’s and Parkinson’s diseases.

Neuro Rescue role as an iron-chelator and antioxdant. Neurodegeneration in Parkinson’s and Alzheimer’s disease are characterized by the accumulation of iron at the location where neuron cell death occurs. Iron increases levels of oxidative stress at the site, and is believed to be a major factor in the neurodegenerative process. EGCG is an iron chelator, and can remove the iron, thereby eliminating a significant source of oxidative stress. In addition, EGCG is an potent antioxidant, which further mitigates the oxidative stress of the neuron.

Greatly improves levels of antioxidant enzymes and antioxidants in the brain. The brain is very susceptible to oxdiative stress related damage because of its high content of polyunsaturated acids. EGCG has been shown, in lab animals, to improve the activity of antioxidant enzymes such as superoxide dismutase, as well as support increased levels of the antioxidants tocopherol, ascorbic acid and glutathione. EGCG is therefore a good neuroprotective agent (from oxidative stress) for the aging brain.

-------
There's a lot of information about EGCG on the Changing Minds About Down Syndrome Blog Start reading at the beginning of the DYRK1A and DSCR posts.
______
There is a possible clinical trial underway concerning EGCG and Down syndrome.
_____


Green Tea May Cut Alzheimer’s Risk…

Excerpt from: http://www.memoryaction.com/content/Ingredient_Research.htm

Green tea...contains a compound called EGCG that appears to reduce the formation of beta-amyloid, a toxic protein that builds up in the brains of those with Alzheimer’s disease…....Many researchers believe that by blocking formation of beta-amyloid, memory loss and other troubling symptoms may be slowed or halted. “The findings suggest that a concentrated component of green tea can decrease brain beta-amyloid plaque formation,” says researcher Jun Tan, M.D., Ph.D., director of the Neuroimmunology Laboratory at the University of South Florida. “If beta-amyloid pathology in this Alzheimer’s mouse model is representative of Alzheimer’s disease pathology in humans, EGCG dietary supplementation may be effective in preventing and treating the disease.”


Sipping Tea Not Enough...

But drinking green tea or taking green tea supplements rich in antioxidants may not be enough to cut Alzheimer’s risk. The researchers showed that other flavonoids in green tea actually block EGCG’s ability to prevent the harmful buildup of beta-amyloid. “This finding suggests that a green tea extract selectively concentrating EGCG would be needed to override the counteractive effect of other flavonoids found in green tea,” says Doug Shytle, Ph.D., of the University of South Florida….

By www.ALZinfo.org, The Alzheimer’s Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University.


Source
Rezai-Zadeh K, et al: “Green Tea Epigallocatechin-3-Gallate (EGCG) Modulates Amyloid Precursor Protein.” Journal of Neuroscience, Volume 25. September 21, 2005, pages 8807-8814.

Source: http://www.memoryaction.com/content/Ingredient_Research.htm

References
Chen LW, et al. Chinese herbs and herbal extracts for neuroprotection of dopaminergic neurons and potential therapeutic treatment of Parkinson's disease. CNS Neurol Disord Drug Targets. 2007 Aug;6(4):273-81.
Tohda C, et al. Search for natural products related to regeneration of the neuronal network. Neurosignals. 2005;14(1-2):34-45.
Haque AM, et al. Long-term administration of green tea catechins improves spatial cognition learning ability in rats. J Nutr. 2006 Apr;136(4):1043-7.
Hou RR, et al. Neuroprotective effects of (-)-epigallocatechin-3-gallate (EGCG) on paraquat-induced apoptosis in PC12 cells. Cell Biol Int. 2007 Sep 1
Avramovich-Tirosh Y, et al. Neurorescue activity, APP regulation and amyloid-beta peptide reduction by novel multi-functional brain permeable iron- chelating- antioxidants, M-30 and green tea polyphenol, EGCG. Curr Alzheimer Res. 2007 Sep;4(4):403-11
Weinreb O, et al. The application of proteomics for studying neurorescue activity of the polyphenol (-)-epigallocatechin-3-gallate. Arch Biochem Biophys. 2008 Jan 13
Srividhya R, et al. Attenuation of senescense-induced oxidative exacerbations in aged rat brain by (-)-epigallocatechin-3-gallate. Int J Dev Neurosci. 2008 Apr;26(2):217-23

Video on EGCG & Down syndrome & Alzheimer's disease

Prof. Jacqueline London "Therapeutical Approach for Trisomy 21 & Alzheimer disease" 

AD/DS links start at 3:03, For EGCG jump to 7:22 and it stops at 14:50
http://www.youtube.com/watch?v=TXKcvBCOz7A

For my Product recommendations, see the DS Day to Day amazon Store

NSI GreenSelect Green Tea Extract features GreenSelect Phytosome® , a standardized, caffeine-free green tea extract complexed with soy phospholipids for enhanced bioavailability and efficacy. Like the enhanced bioavailability, but don't like the soy, though...

GreenSelect Green Tea Phytosome

More info on GreenSelect

Decaffeinated and fluoride-free liquid: bodyecology.com $20, or 3 for $16.96 each or 4 for $15.96 each.
It contains 80 mg of polyphenols per 20 drops, 100 mg of polyphenols per 30 drops. This actually may be discontinued.

Green Tea Elite with EGCG

Teavigo is a good brand.

Dosage


EGCG may be given every 4-6 hours. As for dosage, an adult is advised to take no more than 500 mg in a 24 hour period. Please read about possible side effects of high doses before deciding how much to give.

Former dosage suggestion: 9mg/per kg of EGCG. This is the dose they used in the clinical trial done in Spain by Dierson, see www.clinicaltrials.gov for details.

New dosage suggestion: Up to 15-20mg/per kg of EGCG. This is the dose they used in a new EGCG study to be published in August 2013. I have a copy and can email it to you if you'd like.

With this new dosage info, I increased Jett's dose to 10mg/per kg and saw huge increases in just three days. He went up from an Auditory Processing level of 2-3 to a solid 3. I took him off for a while and when I restarted, he went from 5 word sentences to using his first 6 and 7 word sentences!

Jett weighs 27 lbs/12.24 kg x 10mg = 122mg of EGCG. The brand I have (Vitacost green tea select with Phytosome) contains 120mg of EGCG per capsule so he gets one capsule, three times a day and will slowly increase his dose to 15mg/per kg and then to 20mg/per kg to see how it goes.

That would be 27 lbs/12.24 kg x 15mg = 183mg of EGCG. So that would be 1 1/2 capsules, three times a day (120 + 60).

And then 27 lbs/12.24 kg x 20mg = 244mg of EGCG. So that would be 2 capsules, three times a day (120 + 120). At four years old, 28.8 lbs, this is the dose Jett gets, but I only give it twice a day. Once in the am and then again in the late afternoon.


Here is a website that a dad started about giving EGCG to his son with DS it has dosage info (that's probably outdated now). Side Effects

EGCG is an iron chelator, which is great for most of our kids. But if your child's iron is low, make sure you are giving him plenty of sources of iron. Jett's iron (at an early blood test) was on the low side of normal. So I have added extra vitamin C to help his body better use iron and will soon introduce organic liver from grass fed cows.

EGCG decreases the absorption of folate and our children need it, so you have to supplement with calicium folinate (folinic acid) or l-5-methlyfolate. (See explanation below.)
To address this, I increased Jett's folinic and folinate intake and always give B12. I also give EGCG four hours after I give Jett the other supplements to give the folate and folinic acid some time to absorb.

From mom to 3 year old with DS, Linley Lyerly: 

EGCG blocks DHFR enzymes which converts folate in to folinic acid. So if you give folinic acid, then you bypass this problem.  I however, recently came across another role for DHFR in the methylation/folate/methionine-homocysteine cycle (and all the trillions of things connected to this complex thingy).  I read that DHFR is involved in recycling BH4.  I will add the link for the study, but here is the gist from what I understand.  So BH4 is critical for making nitric oxide.  But under times of high oxidation (which occurs in DS) then it tends to be converted to BH2 rather than BH4. BH2 is not a good thing because it uncouples NOS (nitric oxide synthase), an enzyme critical for NO production.  DHFR is a cool player, because it can come along and convert some of that BH2 being made, back into BH4.  This is great....it helps to regulate proper BH2:BH4 ratios, and it says particularly when there is low biopterin available, which often is the case in DS. Also, if you have the a1298c MTHFR mutation, which my kiddo has, then you already have trouble making adequate BH4.  so, this unfortunately seems like a pretty critical role for DHFR and thus inhibition by EGCG may not be ideal.  This being said, Dyrk1a (whose gene product EGCG inhibits) plays a role in the methionine-homocysteine conversion part of that cycle.  So....which one do you "fix" and which one do you "sacrifice"?  This is what I have been wrestling with lately in regards to EGCG use.

Here are the two studies:

Critical Role for Tetrahydrobiopterin Recycling by Dihydrofolate Reductase in Regulation of Endothelial Nitric-oxide Synthase Couplinghttp://www.jbc.org/content/284/41/28128.full

DYRK1A, a Novel Determinant of the Methionine-Homocysteine Cycle in Different Mouse Models Overexpressing this Down-Syndrome-Associated Kinasehttp://www.plosone.org/article/info:doi/10.1371/journal.pone.0007540

From mom, Christy:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1964900/
Here are some excerpts from the article about "too much of a good thing can be harmful" referring to nine case reports of liver toxicity caused by ingesting too much EGCG.:

• laboratory research with both rodents and dogs has shown that high doses of the most heavily studied green tea polyphenol, (-)-epigallocatechin-3-gallate (EGCG), cause liver, kidney, and gastrointestinal toxicities.
• “To date, there have been nine anecdotal case reports of liver toxicity in humans associated with consumption of high doses [700–2,000 mg/day] of green tea from dietary supplements,” says lead author Joshua Lambert,
  an assistant research professor in the Department of Chemical Biology
  at Rutgers University.
• “In some cases, the subject stopped taking the supplement and the symptoms resolved, and then the subject started taking the supplement again and liver toxicity returned.” Such observations, albeit anecdotal,
  suggest that green tea supplements are not without risk.
• “People who take less than 500 mg [of green tea concentrate or preparation] per day and spread the dose out over the course of the day are unlikely to have toxic side effects,” says Yang.
• Yang adds that some Japanese publications report beneficial effects for the consumption of 10 cups of green tea a day with no apparent harmful effects.
• Yang and Lambert hypothesize that people with oxidative stress–related liver diseases such as hepatitis or cirrhosis may be at greater risk of toxic side effects from ingesting high doses of green tea polyphenols.
  “When a person’s liver is already under stress, toxic effects tend to
  become amplified,” Yang says.
• Conversely, he notes there are data showing that low or moderate amounts of green tea have a protective effect against both toxicity and carcinogenesis in target organs—once again supporting the adage
  “everything in moderation, nothing to excess.”

Additionally, this study suggests that 600mg total catechins (50% egcg), given in 3 daily divided 200mg doses over the course of 2 years, is perfectly safe and quite beneficial. 

One thing I would take from this article if I were giving EGCG to my child is to spread the dose out throughout the day (like your body would get it if you were drinking green tea throughout the day). You wouldn't sit down and drink 10 cups of green tea at once - thus your body wouldn't get 10 cups worth of EGCG at once. Also, the statement about "those taking less than 500 mg EGCG at once are less likely to have toxic side effects" - I assume they are referring to adults, so keep that in mind when trying to convert the dose to a safe level for children.

Watch out for these:
Folic Acid Deficiency Symptoms

Folic acid deficiency causes very general symptoms such as:

• Fatigue and weakness
• Headaches and difficulty concentrating
• Palpitations
• Diarrhea
• In the early stages, the tongue may be red and painful leading to a smooth shiny surface in the chronic stages of deficiency.

The Three Stages of Folic Acid Deficiency 

At the first stage of deficiency the plasma folate levels fall. If the diet does not contain adequate folate, the red blood cell (RBC) folate levels drop after three to four months. With continuing deficiency, the bone marrow cells and other cells become affected. This is stage three, the clinical stage of folic acid anemia. It occurs after approximately four to five months of deficiency. Folic acid anemia is called megaloblastic anemia. 

Folic acid functions in DNA synthesis and therefore cell division. Without this important vitamin, cells such as red blood cells produced in the bone marrow, fail to divide properly. RNA continues to form and build up producing excess haemoglobin. The RBC becomes an immature enlarged non-functioning cell often containing excess haemoglobin. This is megaloblastic anemia. 

Certain factors confuse the diagnosis of folic acid deficiency anemia. The folic acid anemia is identical to the anemia of vitamin B12 deficiency. Therefore, it is very important to rule out vitamin B12 deficiency before taking folic acid supplements for anemia; otherwise, the megaloblastic anemia of vitamin B12 may go on unnoticed. In addition, the factors that lead to folate deficiency, such as poor diet, malabsorption and alcoholism, affect other nutrients as well, so singling out folic acid as the cause is often difficult. 

Testing for Folic Acid Deficiency 

Serum folate levels reflect recent changes in folate intake whereas RBC folate measures the folate stored in the body. RBC folate is a more reliable test. These tests are available through a standard blood test from the doctor. 

High homocysteine levels may also reflect low folate status but it may also be indicative of vitamin B12 and vitamin B6 deficiency. [Our kids usually have a B12 deficiency and an overabundance of B6.- Andi]

Resources
Shils ME, Shike M, Ross AC, Caballero B, Cousins RJ. Modern Nutrition in Health and Disease. 10 ed. Maryland: Lippincott Williams & Wilkins; 2006.
Gropper S, Smith JL, Groff JL. Advanced nutrition and human metabolism. Belmont, CA: Thomson Wadsworth; 2005.
Johnson LE. Folate [monograph on online] 2007 April [cited 2008 November]
Gentili A. Folic Acid Deficiency. [monograph online] 2007 19 September [cited 2008 November]

Read more at Suite101: Folic Acid Deficiency: The Causes, Symptoms, and Stages of Folate Deficiency and Anemia http://www.suite101.com/content/folic-acid-folate-deficiency-a79897#ixzz1GuI87ODM

Related Posts

Folic Acid Cuts Alzheimer’s Risk in Half
Why B12 & Folinic Acid for Down syndrome?
Gingko: The Hows and Whys for Down Syndrome
Why Rhodiola Rosea?
Jett's Supplement List
Longvida Curcumin
Anemia: Causes and Cures