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may notice that my list is different than what is suggested in the Changing Minds Foundation website (This protocol is outdated and I don't agree with the pharmaceuticals suggested), NuTriVene's Complete Program (minus the folic acid, Piracetam, Aricept and Namenda) or LifeExtension's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

Fats & Oils

Phosphatidylcholine

Phosphatidylcholine is a phospholipid that makes up 50% of the cell membrane. The membrane is the lining of every nerve cell that carries our signals. We are trying to heal the brain by growing new neurons and allowing them to fire. Giving PC is like bringing the bricks to the construction site when building a house.

Formulated with a 4:1 Ratio of Omega 6 to Omega 3 in Liquid form or Softgel pills.

Of the tens of thousands of molecules that make up the life of a cell, Phosphatidylcholine (PC) stands apart; probably the most important one of all. BodyBio PC is made of only pure phospholipids which automatically form liposomes in the watery environment of the body, but it goes one important step further....it is also formulated with the essential lipids at a 4:1 ratio. Most PC currently available has an EFA ratio of ~12:1. BodyBio PC not only has a higher concentration of PC, up to 66% but also maintains EFA concentration at the preferred 4:1 ratio, a BodyBio exclusive. (online at bodybio.com)

Here's a great article on Q's blog: Fats & Oils

Body Bio Balanced Oil

Body Bio Balanced Oil is included to reduce inflammation so that we reduce the onset of Alzheimer's Disease. It was shown in 2004 that reducing inflammation in the brain of the DS mouse prevented neuron loss and delayed decline of function. (online at bodybio.com)

The fallacy of using DHA alone for brain [health]
by Dr. Barry Sears

I am constantly amazed by the lack of understanding by neurologists of basic
essential fatty acid biochemistry in the treatment of brain trauma and
concussions. They often blindly believe that the only omega-3 fatty acid that
has any impact in the treatment of concussions is DHA alone. Their blind faith
is based on the observation that you find a lot of DHA in the brain and little
EPA. This obviously means that EPA must not be important for brain function.
This is similar to stating the world is flat because it appears that way to the
naked eye.

I have mentioned many times in my books that EPA and DHA have different
functions, and that’s why you need both of these essential omega-3 fatty acids
(1-4). This is especially true for the brain. EPA produces most of the
anti-inflammatory properties of omega-3 fatty acids since it’s structurally
similar to arachidonic acid (AA) as they both contain 20 carbon atoms with
approximately the same spatial configuration. As a result, EPA can inhibit
the enzymes that would otherwise produce pro-inflammatory eicosanoids from AA.
It is AA that generates the inflammation caused by brain trauma. DHA, on the
other hand, is primarily a structural component of neural tissue. They do
different jobs, and that’s why you need both in combination.

So why isn’t there as much EPA in the brain compared to DHA? The reason is
simple. EPA enters the brain just as quickly as DHA, but it is rapidly
oxidized, whereas DHA is sent off to long-term storage in neural tissue (5-7).
The lifetime of DHA in the human brain is measured in years, whereas the
lifetime of the EPA is measured in days. So obviously when you kill an animal
and look at the brain, you are not going to find very much EPA.

What complicates the issue is that if you only treat a concussion with DHA,
some of the DHA will be converted to EPA. This gives the appearance that DHA
is working to reduce inflammation. Since brain trauma and concussions generate
inflammation in the brain, doesn’t it make more sense to provide as much EPA as possible to reduce the inflammation as opposed to supplementing only with DHA and hoping some fraction of it will be converted to EPA?

To answer that question, it is useful to look at two recent studies that used
the same protocol to study inflammation induced by a concussion injury (8,9).
The same total amount of omega-3 fatty acids was used to treat the animals
after the concussion injury. One experiment used a 2:1 ratio of EPA to DHA,
and the other experiment used only DHA. If the DHA was so important, then the
animals treated with the DHA alone should have demonstrated three times the
reduction of neuro-inflammation compared to the group that received omega-3
fatty acids containing only one-third as much DHA.

In fact, just the opposite was the case. The 2:1 EPA/DHA group demonstrated
greater benefits compared to the DHA-alone group in reducing neuro-inflammation induced by a concussion. Why? EPA is a far more powerful anti-inflammatory agent than DHA. This is why in both studies the AA/EPA ratio was used as the marker of inflammation induced by the concussion injury. Since the AA/EPA ratio was decreased in both studies, this meant that some of the pure DHA was converted to EPA providing at least some anti-inflammatory actions. Thus giving 100 percent DHA is not exactly the most efficient way to decrease neuro-inflammation induced by a concussion injury. This is further emphasized by a recent study that indicated that 1 gram of DHA per day for an 18-month period had no impact in the cognitive improvement of Alzheimer’s patients (10), even though Alzheimer’s is known to be a neuro-inflammatory disease (11).

Does this mean that DHA is not important for brain repair? Of course not. This
is because you need both EPA and DHA for optimal repair of brain damage after a concussion. You need the EPA to reduce the neuro-inflammation, and you need the DHA to help rebuild new neurons. But to give DHA alone without additional EPA to maximally reduce neuro-inflammation caused by concussions simply makes no sense.

Dr. Barry Sears is a neurologist and expert on inflammation at the cellular
level.


<http://blog.zonehealth.com/2011/05/the-fallacy-of-using-dha-alone-for-brain-trauma/>



References
1. Sears B. “The Zone.” Regan Books. New York, NY (1995)
2. Sears B. “The OmegaRx Zone.” Regan Books. New York, NY (2002)
3. Sears B. “The Anti-inflammation Zone.” Regan Books. New York, NY (2005)
4. Sears B. “Toxic Fat.” Thomas Nelson. Nashville, TN (2008)
5. Chen CT, Liu Z, and Bazinet RP. “Rapid de-esterification and loss of
eicosapentaenoic acid from rat brain phospholipids: an intracerebroventricular
study.” J Neurochem 116: 363-373 (2011)
6. Chen CT, Liu Z, Ouellet M, Calon F, and Bazinet RP. “Rapid beta-oxidation
of eicosapentaenoic acid in mouse brain: an in situ study. “Prostaglandins
Leukot Essent Fatty Acids 80: 157-163 (2009)
7. Umhau JC, Zhou W, Carson RE, Rapoport SI, Polozova A, Demar J, Hussein N,
Bhattacharjee AK, Ma K, Esposito G, Majchrzak S, Herscovitch P, Eckelman WC,
Kurdziel KA, and Salem N. “Imaging incorporation of circulating
docosahexaenoic acid into the human brain using positron emission tomography.”
J Lipid Res 50: 1259-1268 (2009)
8. Mills JD, Bailes JE, Sedney CL, Hutchins H, and Sears B. “Omega-3 fatty
acid supplementation and reduction of traumatic axonal injury in a rodent head
injury model.” J Neurosurg 114: 77-84 (2011)
9. Bailes JE and Mills JD. “Docosahexaenoic acid reduces traumatic axonal
injury in a rodent head injury model.” J Neurotrauma 27: 1617-1624 (2010)
10. Quinn JF, Raman R, Thomas RG, Yurko-Mauro K, Nelson EB, Van Dyck C, Galvin
JE, Emond J, Jack CR, Weiner M, Shinto L, and Aisen PS. “Docosahexaenoic acid
supplementation and cognitive decline in Alzheimer disease: a randomized
trial.” JAMA 304: 1903-1911 (2010)
11. Akiyama H, Barger S, Barnum S, Bradt B, Bauer J, Cole GM, Cooper NR,
Eikelenboom P, Emmerling M, Fiebich BL, Finch CE, Frautschy S, Griffin WS,
Hampel H, Hull M, Landreth G, Lue L, Mrak R, Mackenzie IR,McGeer PL, O’Banion
MK, Pachter J, Pasinetti G, Plata-Salaman C, Rogers J, Rydel R, Shen Y, Streit
W, Strohmeyer R, Tooyoma I, Van Muiswinkel FL,Veerhuis R, Walker D, Webster S,
Wegrzyniak B, Wenk G, and Wyss-Coray T. “Inflammation and Alzheimer’s
disease.” Neurobiol Aging 21: 383-421 (2000)


The fats... Jett gets tons of fats... Coconut oil, fresh avocado, Bio Body PC, fermented cod liver oil and raw/organic butter from grass fed cows... The fermented CLO & butter supports the good bacteria in Jett's stomach. Without it, he just doesn't have bowel movements...
CLO & the butter mixture also always for proper Vitamin D absorption. 
Here's what Teresa wrote in one of the forum entries:

Oils, Oils, Oils...... this is the tough stuff of chemistry. But here goes. Dr. Kane and some very compelling research says that the perfect ratio of omega 6's to omega 3's is a 4 to 1 ratio. With that said, let me back up and try to explain what that means.
When someone says omega 3, it means that there is a double bond at the third carbon from the end. If they say, omega 6, then the first double bond is at the 6th carbon.

What body bio did is put [omega 6 -18 carbon long oil] 4x to [omega 3 - 18 carbon long] 1x ratio. this is like putting the beginning of the lipids in and then the body can add carbons to make them longer carbon chains. EPA has the first double bond at the third carbon and is 20 carbons long. DHA is 22 carbons long.

Yes, Leichtman says that flax goes rancid too quickly. I've never had this problem with this product. That is like saying I don't buy fresh fruit b/c it goes bad. All good oils (cis) go rancid. The reason they made trans oils is b/c they extended the shelf life. Right the bacteria don't want to eat plastic. Almost all things in nature are in the cis conformation. Stereochemistry. cis is a boat and trans is a chair.

Wikipedia has a good explanation of fatty acids.

So what you are doing is giving your child fatty acids that are longer than Body bio. It is not that fish oil is not recommended it is that we mess up the ratio if one takes too much fish oil. There is a theory that we eat mainly omega 6's so taking fish oil brings the ratio into balance. Good idea but somehow doesn't cut it. Taking the 4:1 BBB seems to be the key to triggering the resolvin pathway.I have attached some research on the resolution pathway. It resolves inflammation and that is what we really want.
I have attached two files. One with a picture of a phospholipid and the other research about resolvins.

Ok, so the long chains of carbons are anywhere from 16 carbons to 24 (and they can get longer and they are called very long chain fatty acids)

According to the Trisomy 21 Research Foundation recommended dosage:
5-10lbs      200mg DHA
10-15lbs    350mg DHA
20-40lbs    300mg DHA/EPA
40-60lbs    600mg DHA/EPA
60-80lbs    900mg DHA/EPA
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