Thursday, April 12, 2007

To supplement or not supplement...

When Alfie was very little someone sent me a magazine article that really got me mad. It said that Down syndrome was caused by a lack of folic acid in utero, and that if you took certain supplements your child would be 'normal'. 'Normal' looking and 'normal' thinking. That's a short summary but I was furious. Firstly, I took folic acid religiously when I was conceiving and pregnant, and secondly, why would I want my child to be 'normal'! I love him and accept him wholly for who and what he is. He is beautiful and couldn't be more so, and I'm not going to try and 'cure him' because he's got an intellectual disability. Thirdly, I thought the whole thing was written to try and sell a product and prey on vulnerable people.

Then Alfie was diagnosed with fluid on his ears and developed pneumonia. I took him to his pediatrician who told me that Alfie might have an impaired immune system due to the extra chromosone. Again, I was furious. "He's just ill - why does everything have to be because of Down syndrome?". But, after spending 15 nights in hospital when most kids are out in 3 or 4 days, I realised that maybe Ds was playing a part here. In order to try and do the best I could for my child I took him to a naturopath who prescribed a multi-vitamin called Nutrivene-D, vitamin D and fish oil. I bought the Nutrivene-D (at much expense) and started to give it to Alfie on a daily basis.

So, Alfie's immune system doesn't seem to be doing its job properly. But can these supplements really help with this? Am I being ripped off with the Nutrivene-D? Is there any scientific evidence for any of this? Is there any evidence at all?

Well, my lovely friend Karen is staying with us from England, and she just happens to be a librarian for one of London's major teaching hospitals. This means she has access to all the major clinical trials, and reviews relating to them - and what's more, she understands them! Bless her, she's spent ages this evening downloading all the clinical trials that relate to Down syndrome and supplements.

Copyright on some of these findings means that I can't just upload all the results and make them available for free so I'm going to summarise the information here. It might be a bit long winded, but I hope you find it useful. Please bear in mind that I have abbreviated the information to make it understandable - and I've tried to use the clinical trials to answer my own questions. Although I have tried to be as objective as possible, I am not a scientist and I might have got some things wrong.

The searches Karen used were via pub-med , and The Cochrane Library. We read the abstracts and conclusions for around 30 studies, but only 8 were really relevant. You can do your own searches on pub-med, and many papers are available for free.

The first thing that we noticed is that there were lots of trials relating to Ds and supplements pre-1985, and then they petered out. Is this because money was redirected towards pre-natal scanning at this point? It is really striking that there are so few trials relating to such a major health problem. There are more recently, but these are generally relating to ailments that are also seen in the general population such as Alzhiemers. Anyway, here are my questions:

Can dietary supplements reduce the likelihood that Alfie will develop dementia at an early age?
According to the research paper Can cognitive deterioration associated with Down syndrome be reduced? (Thiel & Fowkes, 2004), individuals with Down syndrome are "much more likely to have cognitive deterioration and develop dementia at an earlier age than individuals without Down syndrome". "This paper suggests that essential nutrients such as folate, vitamin B6, vitamin C, vitamin E, selenium, and zinc, as well as a-lipoic acid and carnosine may possibly be partially preventive. Acetyl-L-carnitine, aminoguanidine, cysteine, and N-acetylcysteine are also discussed, but have possible safety concerns for this population. This paper hypothesizes that nutritional factors begun prenatally, in early infancy, or later may prevent or delay the onset of dementia in the Down syndrome population."
This paper is very complicated and there's lots to read, but an 'Alice summary' of it is yes, there is evidence that some supplements might be effective in delaying dementia. And according to this paper, folic acid, vitamin B6, vitamin E, selenium, and zinc, a-lipoic acid and carnosine won't do any harm.
(From "Can cognitive deterioration associated with Down syndrome be reduced?" R. Thiel*, S.W. Fowkes, Center for Natural Health Research, Down Syndrome-Epilepsy Foundation, 1248 E. Grand Avenue, Suite A, Arroyo Grande, CA 93420, USA, 24 August 2004). You can read the abstract for this article, or buy the full text for $30 US at

As a footnote to this, I also looked up herbal treatments for Alzheimers and found a systematic review that found that certain herbs, including ginkgo biloba, are useful for cognitive impairment of Alzheimers. "These herbs and formulations have demonstrated good therapeutic effectiveness".
(You can download this review for free from pubmed. Search for: Evid Based Complement Alternat Med.
2006 Dec;3(4):441-5. Epub 2006 Oct 23.
The use of herbal medicine in Alzheimer's disease-a systematic review. Dos Santos-Neto LL, de Vilhena Toledo MA, Medeiros-Souza P, de Souza GA.)

Can dietary supplements make Alfie cleverer?
There has been a thorough review of all the clinical trials that test whether cognitive development can be improved with dietary supplements. Only eleven trials were deemed rigorous enough to be included in the review and "overall, the quality of these trials was poor with few subjects and generally inadequate allocation concealment of the treatments given." None of the trials could record any effect on cognitive development from taking vitamin and mineral supplements. The review could find "no positive evidence that any combination of drugs, vitamins and minerals enhance either cognitive function or psychomotor development in people with Down syndrome. However, because of the small number of subjects involved and the overall unsatisfactory quality of the trials, an effect cannot be excluded at this point."
In short, the trials are inconclusive and there is no proof at present.
(MICHAEL S SALMAN Department of Paediatric Neurosciences, King’s College Hospital, London, UK, doi: 10.1053/ejpn.2002.0596 European Journal of Paediatric Neurology 2002; 6: 213–219).

However, I have read a first hand account by a parent who says that she has noticed a cognitive change in her son when he takes ginko biloba, so personally I wouldn't rule this out completely. I just think there isn't enough research to really know and I would be suspicious of any drug companies trying to sell supplements on this premise.

Can dietary supplements effectively boost Alfie's immune system?
According to Nutritional supplementation in Down syndrome: theoretical considerations and current status (Ani, Grantham-McGregor & Muller, 2000) "There have been seven uncontrolled zinc trials with pre and post-treatment measurements with a total of 168 individuals with DS aged 2 to 22 years. All the studies consistently reported mainly laboratory evidence for beneficial effects of zinc supplementation on the immune function of individuals with DS." But there haven't yet been wide and thorough tests so the evidence is not yet conclusive: "In summary, although there are encouraging results from uncontrolled studies and in vitro experiments suggesting that zinc supplementation may enhance immunity and reduce malignant potential in individuals with DS, there is no rigorous or consistent evidence from clinical trials to show that this is the case." In my opinion, that's a yes, possibly, for zinc.

This paper also discusses 'oxidative stress' (I don't know what that is), and its effects on people with Down syndrome. It suggests that 'oxidative stress' may be responsible for increased 'malignancy' (I don't want to know what that is!); mental development, and premature aging, and that Vitamin E might help to combat this. "

"It is possible that supplementing individuals with DS with exogenous antioxidants [such as Vitamin E] may offer similar protection to their cerebral status. This is supported by the protective effect of antioxidants on DS neurons in culture, referred to earlier. A randomised controlled trial of vitamin E in Alzheimer’s disease found significant beneficial effects." So, yes, Vitamin E is likely to be beneficial.

According to this paper, trials that showed benefits from selenium, mega vitamins and mineral supplements, Vitamin A, Vitamin B6, and Targeted Nutritional Intervention (TNI) supplementation, were all flawed. So, no, there is currently no evidence to suggest that these are effective in combating infections (although they might be useful in treating Alzheimers - as discussed earlier).

An interesting note on TNI supplements (which I think includes Nutrivene-D):
"We found that a typical TNI preparation contains 1000 mg of vitamin C which may be unsafe in children, given that a daily intake of 500 mg of vitamin C has been shown to have pro-oxidant effects in adults." So, that's a no, it might not be good for children with Ds to take large doses of vitamin C.
Nutritional supplementation in Down syndrome: theoretical considerations and current status. Ani C, Grantham-McGregor S, Muller D. Dev Med Child Neurol. 2000 Mar;42(3):207-13. Centre for International Child Health, Institute of Child Health, University College London, UK. 10755461 [PubMed - indexed for MEDLINE]

What should I be giving Alfie?
Well, while Alfie's brain is developing, it seems sensible to take advantage of the possible effects of these supplements especially as there is clear indication that some vitamins are beneficial for specific ailments. If I wait until clinical trials have been completed, Alfie might be too old for anything to be beneficial and I would rather pay for vitamins now, than be sorry later. There is a trial taking place in the UK at the moment which should help to answer some of the questions that are currently up in the air. For this trial children aged 1 or over were given the following nutrients:
Nutrient / Dose
Vitamin A (beta carotene) / 1.2 mg
Vitamin C / 65 mg
Vitamin E / 130 mg
Zinc / 6.5 mg
Selenium / 13 micrograms

Folinic Acid / 130 micrograms
I'm assuming that they thought this combination would have some effect and is unlikely to do harm, so I might do the same, but add Ginko Biloba aswell. And maybe vitamin B6, and carnosine (?). I'll discuss it with our pediatrician and naturopath. I'll also check the amount of Vitamin C in the Nutrivene-D dose, and if it's 65 mg or under, I might continue using that - certainly until I finish the pack! Also, the Nova Scotia Down Syndrome Society has organised a one day conference on health which will look at supplements, so I'll discuss it with people then and update this post afterwards.
I've got some more information to read, including a paper about fluid on the ear, so be warned, I might continue this dense and heavy thread in future posts!


Catharine said...

Alice - you and your friend have done a lot of homework! You amaze me. I don't know how you do it all!

We too did a lot of reading and found a lot of companies out there trying to sell their wares with no substantial basis. You get your hopes up and then you figure it all out, "that it is what it is". Your child is the sweetest thing in the world and why do we continue to feel pressured to fix it?

We have followed the recommendation of our geneticist at Children's, who has had over 3000 patients with Down Syndrome over his 30 year career (we draw from 5 states around here) - so he has been in the unique position of seeing many babies with DS grow into middle aged adults. His anecdotal evidence is that children with DS and ALL children should take a daily vitamin. However, he personally has seen better health in those children with DS that have taken vitamins that include zinc. Regular health, not cognitive health. So I have vitamins with zinc supplements added. And do I give it to her daily? Only when I remember. :) C said...

Thanks for that Catharine. Very useful to know. Another friend of mine has told me that Ginkgo increases the blood flow and therefore oxygen to the brain.
Piracetam is a drug and you should be cautious with it. Also, she recommends reading "Down Syndrome and Vitamin Therapy
Unlocking the secrets of improved health, behavior and intelligence
by Kent MacLeod, B.Sc.Phm", available at
Alice :)

L. Noelle said...

hi Alice! Good for you & your friend for researching. I myself have been doing the research for 2-1/2 years and continue to follow all the newest studies. I have concluded after everything that I've read, to use Nutrivene D, which we have since Jaden was 3 months, and he's never even had an ear infection at 28 months! Also, we use Ginkgo, which I know you already know. Please go to my post on supplements and click on the links, there you will find even more information and research, especially on Ginkgo Biloba. Because it's a relatively harmless herb, especially not at high doses, I really didn't feel like I was taking much of a risk in using it. To this day, I feel like it is the right thing, Jaden is so Exceptional that He is Living Proof that these things really do work. BTW, Nutrivene D doesn't Overdose on the Vitamins. It is all relavent to the weight of your child. There is no need to add extra zinc or extra D if you use Nutrivene. YOu can add DHA though. Best of Luck to you!

Shelley said...

Wow - thanks for sharing your summaries of the research - I have kept putting this issue off for too long. I guess I need to find a naturopathh and discuss some of these things with Hannah's pediatrician. You have asked (and answered) many of the questions that i had about supplements.

jennifergg said...


More information for you: there's a post on my blog with links to some studies about CoQ10; Kent MacLeod is one of the physicians affiliated with NutriChem, which is a producer of a TNI product; there's another resource you could look at, a book written by Joan Guthrie Medlen, a registered dietician and a mom to a son with DS, called THE COMPLETE DOWN SYNDROME NUTRITION GUIDE (or something like it, my short term memory is shot. Maybe I should be the one taking the Ginkgo!)

Thanks for sharing your findings!

Alice said...

I'm commenting on this months after I wrote it. We've been giving Alfie all the supplements I wrote about here and I've really noticed a difference when I stop giving him the Ginko Biloba for a few days. He gets slower to react and seems less responsive to me so I am determined to continue giving him that. What else - he's still prone to get every other illness - I'm trying a short course of echinacea to see if it will build his immune system ready for the coming flu season!.

Alice said...

Further to this...I've just been told that with Nutrivene D the vitamin C dosage is not 1000mg for everyone. NVD is dosed according to weight..if you want to see how much of each nutrient is in the dose that a person would be taking, you can go to this site and enter the child's age and weight:

Also, according to a report I read on the BBC website, tumeric is proven to be effective in helping to prevent Alzheimers.

rdill said...

You've done a nice piece or work, although like many things in medicine, some conclusions will change over time. My viewpoint today is adults in the 30-something range including my own daughter. My local subset is a group of six who have their own apartments and live in varying degrees of independence. None of these had supplements other than ordinary vitamins, but all had pro-active parents. They are all very different individuals and none show signs of alzhimers so far. That's a bridge we will cross when and if it comes.

I would concur that supplements might specific individuals with their individual health issues, although we did have a thorough metabolic work-up on my daughter when she was in her teens and found her supprisingly within normal limits except for linolaic acid (seen today as dry skin).

The biggest thing I see is the variation between individuals which make me very skeptical about generalizing from what works for one individual to another any more than I'd take your medications just because they helped you. Studies deal with populations, not individuals.

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