Denial

I met some gorgeous children on Monday. Two kids who have Down syndrome who go to Alfie's playgroup at the Progress Centre. I was planning to leave the kids with Mat and go shopping but these cuties were so gorgeous, with their big eyes and smiles, that I had to stay. Also it was really nice to meet their mums.

Anyway, we got to chatting and one of the subjects that came up was 'denial'. How it is difficult when your baby is born to take on all the information that's given to you. And some subjects are just too much. One of the mum's said she couldn't look at the Down Syndrome Society website, or join it, it was just too much to take on board. I found the same thing with anything medical. At first I threw away all the literature I was given in the hospital about health issues. Often I find myself saying 'la la la' in my head when the doctor's telling me things. I'm finding my own way through now and I've read up on things one at a time, but I was just browsing the web when I came across the Down Syndrome Research Foundation. It looks really interesting but my 'denial' sensor has come up. I've decided to ignore the site and write this post instead. Now I might watch the Trailer Park Boys. Is it 'denial' or is it 'organisation of complex issues into a format which is compatible with my emotional well being'?

Here's a picture of Noah when he was one, eating a melon.

Spring at Peggy's Cove

Alfie and his team

Here are some of the staff who were so wonderful when we had to stay in hospital.
I took this on the day we found out we could go home.

Three pictures of Alfie

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 www.sciencedirect.com

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. cani@ich.ucl.ac.ukPMID: 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!