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Wednesday, March 30, 2011

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may notice that my list is different than what is suggested in the Changing Minds Foundation website (This protocol is outdated and I don't agree with the pharmaceuticals suggested), NuTriVene's Complete Program (minus the folic acid, Piracetam, Aricept and Namenda) or LifeExtension's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

23 comments:

  1. Chris6hJuly 10, 2011 at 8:15 PM

    Just curious...how much are you spending on supplements? I know the curcurmin is $70 for the typical dose each month.

    ReplyDelete
  2. Andi DurkinJuly 10, 2011 at 9:02 PM

    Good question... (One I don't like to think about!) Jett can only tolerate 1/4 teaspoon of LC a day, so that's "only" about $30 a month and he only weighs 16 lbs, so he doesn't ingest much. I'll have to sit down and figure it out the rest.

    ReplyDelete
  3. KristiAugust 17, 2011 at 11:59 AM

    Are you using Evening Primrose Oil, Fermented Cod Liver oil and the Bio Oil all at the same time? If so, can you explain the reasoning behind using the 3 different EFAs? I am a new mother of a child with Ds and trying to figure out what to do for my daughter.

    ReplyDelete
  4. Andi DurkinAugust 17, 2011 at 12:54 PM

    Kristi... Right now I am using the EPO, FCLO & hemp oil (as a replacement for the BB oil) all at the same time... I do NOT have the fats and oils figured out yet. Read the posts on each one and the post called Fats & Oils. It's complicated and I haven't sat down and really poured over all of it yet. If you have the money, you can get your daughter's specific needs analyzed as far as fats. (I'll have to find that info.) I'm reading a book about the brain that says how bad Omega 6s are, but Teresa Cody's research supports the a blend as in the Body Bio oil. TC is focused on our children, so I'm going with her recommendations until I can get a good handle on it myself. The FCLO with the butter oil is so good for our children's digestion, especially with the K2, so I feel it's really important to give them as well. The EPO may be redundant, but it sounds like it does really good stuff as well. And the coconut oil--that is just super good for directly fueling the brain and for the thyroid. This is the best answer I can give you at this time. Let me know what you come up with through email or posting on one of the "fats" pages. Thanks!!

    ReplyDelete
  5. Andi DurkinAugust 31, 2011 at 5:56 PM

    Oh, Mannadosa, you're going to make me really try to figure this out aren't you? EPO = evening primrose oil. Sigh, I'll see if my mother can come over one day soon and watch Jett so I can really try to figure these oils out!!

    ReplyDelete
  6. MarySNovember 30, 2011 at 12:05 AM

    Wow, do you really give the entire supplement list? I have such a hard time getting me 18 month old to take the amount on the CM list. She eats such small amounts. Why is your list so much longer then the CM list.

    I would like to add more. How would you prioritize what's given?

    ReplyDelete
  7. Andi DurkinNovember 30, 2011 at 12:40 AM

    Hey Mary,
    Yes, Jett takes it all daily. It was difficult at first, to figure out how to give it to him. I happen to be working on a post right now about how to give supplements. I'll try to finish it soon. I have lots of tips!
    Why is my list longer? Because the CMF protocol addresses only so much. In fact, Dr. Cody gives her child more than the public protocol, but doesn't want to overwhelm people. (Not to scare those of you who are just learning about all of this...) The more I learn about DS, the more I realize how much there is to fix. Fortunately, it looks like you "just" have to find the right mix of nutrients for your child.
    How do I prioritize what's given? Right now, I'm chasing symptoms, for instance, Jett didn't grow much at all for a year. So, I had to figure how what he needs in order to grow. His eyes are crossing occasionally, so I'm addressing this problem, etc.
    You can email me and let me know what's going on with your child and maybe I can help you prioritize. Some things need to be taken care of sooner rather than later, some things, you have more time.

    ReplyDelete
  8. AnonymousFebruary 18, 2012 at 4:22 PM

    I would love to have your suggestions for my 8 wk old daughter. She has pulmonary hypertension ( on O2) and weak muscle tone.

    ReplyDelete
  9. Andi DurkinFebruary 18, 2012 at 10:39 PM

    Hey Anonymous,
    Lots can be done for muscle tone. I've looked up PH which they thought Jett had for a while, but it turned out that it healed itself. I'd look into CoQ10--ubiquinol, I believe. Email me and we can discuss. :D
    andiandi222 (at) gmail (dot) com

    ReplyDelete
  10. AnonymousMarch 2, 2012 at 1:40 AM

    Hi Andi,
    I have my little guy in Speech & PT what additional things does the neurodevelopmental program adds? Thanks

    ReplyDelete
  11. Andi DurkinMarch 2, 2012 at 7:35 AM

    I don't think you're going to like my answer... From everything I've seen that PT's do, they don't understand our children very well. The exercises that they have our children do put them into positions that cause harm and do not support proper development by skipping steps and by forcing gross motor skills before the child's body is physically ready. They don't understand and address the underlying causes of our children's delays. If you read the post called Crawling: More Important than Sitting or Standing!, for instance, you'll get a small example of the differences.
    A lot of the kids I've seen that have gone through PT rather than ND, unfortunately walk and crawl incorrectly, have incorrectly developed hips, arches and sometimes even bowed legs. The kids I've seen that have gone through ND instead, move in natural, fluid motions and have more typically developed shape in their feet and legs.
    And speech--most STs go about it all the wrong way and or only address on small aspect of speech. See the post called Getting Your Baby to Communicate to understand better all the different aspects that must come together to have proper speech. That being said, I'm sure there are a few PTs and speech therapists out there who are stellar. It's their education and methods that I'm aware of that are not successful with our children. I do have a recent study that says that EI isn't successful for our kids. I can email it to you if you'd like.

    ReplyDelete
  12. mauimomApril 11, 2012 at 5:20 AM

    Hi Andi,
    Have you had time to further understand oils/fats? In the past I have used the Green Pastures FCLO/butter oil plus the Bodybio PC. I ran out of the FCLO/butter oil so I started using Bodybio oil, and continued using the PC too. However, then I spoke with the pharmacist that makes my son's custom vitamin, and he was adamant that I must use DHA/EPA. I agree with him, but confused. I spent the day reading to clarify and now I'm more confused!:(. The 1:4 (omega 3:omega 6) that Theresa Cody recommends seems to be in opposition to pretty much everything else out there...plus it seems that adding fish oil (DHA/EPA) will throw off the anti inflammatory benefits of the 1:4 ratio. Thank you for any suggestions you may have.

    ReplyDelete
  13. AnonymousApril 13, 2012 at 9:35 AM

    Hi Andi, I have a 3.5yr old son we live in Australia. I'm finding your blog do helpful, I'm just wondering would you suggest seeing a naturopath for supplements or just follow your list.
    Thanks

    ReplyDelete
  14. Andi DurkinApril 13, 2012 at 10:19 AM

    Hi Anonymous in Australia,
    It would be great to find a good naturopath to help you. You may be able to learn from him/her and s/he may be able to learn from you as well. Be prepared with info to share and learn as much from the naturopath as you can. And please share what you find out along your journey.
    Looking forward to hearing about your progress.

    ReplyDelete
  15. AnonymousJune 15, 2012 at 9:26 AM

    I have a 12 year old with Down Syndrome and autism. Which am I supposed to address? She has an exceptional diet, and is very healthy. She is also developing really well FOR a child with the dual diagnosis. (says single words, phrases, writes some letters, toilet trained, interactive).

    Where would you go from here?

    She is also on Largactil & Tegretol. Her thyroid is good, according to endo. She is off gluten, dairy, soy and is on a low sugar diet. Supplements: hemp seeds, coconut oil (no fish oil - she's obsessed with salmon), bush flower remedies, enzymes, rotated acidophilus, the odd splash of colloidal minerals, and regular kid's vitamins.

    I look forward to your reply.

    ReplyDelete
  16. Andi DurkinJune 15, 2012 at 9:34 AM

    Can you please email me?
    andi
    andi
    222
    (at)
    gmail
    .com
    Thanks!

    ReplyDelete
  17. AnonymousDecember 6, 2012 at 4:03 AM

    Do you have instructions for which supplements can be combined? It would simplify things and I am concerned about which supplements work well together.

    ReplyDelete
  18. mygiftJuly 16, 2013 at 2:27 PM

    Just wanted to say THANK YOU for this website and your sharing of info and knowledge. I am an already very busy mum of two girls and expecting our third with T21. Excuse my ignorance but there are so many supplements here to give to a baby! Do you put these in foods? Are there ones that come together to minimize number of pills? Etc

    ReplyDelete
  19. mygiftJuly 16, 2013 at 2:29 PM

    Just wanted to say THANK YOU for this website and your sharing of info and knowledge. I am an already very busy mum of two girls and expecting our third with T21. Excuse my ignorance but there are so many supplements here to give to a baby! Do you put these in foods? Are there ones that come together to minimize number of pills? Etc

    ReplyDelete
  20. Andi DurkinJuly 16, 2013 at 5:37 PM

    Hi Mygift,

    Please email me so I can answer you completely. (See address when you click "View my complete profile" under "About me." Then just rest the mouse over the "email" link and look at the bottom left of the screen to see my email.) (or just click it)
    I need to do a post on intro to supplements but in the meantime, I will answer you separately. :)

    ReplyDelete
  21. Joyce TFebruary 12, 2014 at 4:18 PM

    Thank you so much for taking the time to post all this information. I wanted to know if you have looked at the new Nutrivene supplement formulation and what you think of it. We have been using the old formula for our 3 1/2 year old for one year. It is the only supplement we found that we could have compounded w/o vitamin c because she still throws it up. She has done well on it, but is having growth issues and possibly some under methylation issues (we will be pursuing testing for this). So I am concerned now that the old formula may not be helping her and am not sure about the new one. Would love to hear your thoughts on the new Nutrivene. Thank you.

    ReplyDelete
  22. ReenaMay 21, 2018 at 9:08 AM

    Thanks for sharing this article.

    ReplyDelete
  23. UnknownDecember 5, 2018 at 11:05 PM

    Thank you for all this so helpful. I do have a question though. Is he taking all this at once everyday with no break? I have a 8 year old girl and what I give her almost everyday is the cod liver oil turmeric curcumin green tea and ginkgo biloba not everyday vitamin B zinc selenium and once in awhile for immune system echinacea definitely vitamin C. Folic acid vitamin D mostly in the winter. She is very energetic always been never had problems on that department or muscle tone issues. But she has delay on speech of course. I'm going to try the green tea everyday twice a day and increase the dose. Do we have to give it to them everyday how you make them to take all of it? We started with vitamin just two years ago because she wouldn't take anything. Another question is or is that too late? Thank you

    ReplyDelete

Thanks so much for taking the time to comment!