Press release just came out regarding another controlled study on the use of supplements for DS.

http://www.downs-syndrome.org.uk/DSA_detPressRelease.aspx?pr=43

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Darryll

Dad to Joshua (3) and Isabelle, DS, 1-09-05

Thanks, I had kind of heard the results would be along those lines. After doing my own research and stuff right now my thought process is leaning towards a basic multivitamin and fish oil (omega-3) supplements.

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

I am curious about what they were testing though. I was never told that it would improve anything short-term. I always read information that talked about long-term problems with Alzheimers and that it helped with that. I was never given any reason to think that short term there would be any difference whatsoever.

Kayla

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Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

From the NVD people they tout the short term benefits as stronger immune systems and better growth. Only short term cognative/learning type supplements i think being touted are pirectim, gingko and omega 3's all which the TNI people have in their protocal to some degree. It doesn't seem like the study went on long enough to test oxidative stress. I definitely am going to continue giving Eliza antioxidents and folic acid though i am beginning to feel NVD may not be all that much better than another vitamin mixture.

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

Well, first of all, they only used 6 things. Nothing like Nutrivene or Hapcaps so it wasn't really testing for the things that those address. And with those you have a consult and testing for thyroid and other things and they are somewhat customised for your child. This wasn't any such thing.

As well as, I found the message board for it before the study was finished and the parents were talking to each other about things and such that they weren't supposed to be. Someone from the study came on and posted that they were not supposed to be discussing what they were. To me the study was significantly flawed and since it wasn't even close to hapcaps or nutrivene why study it?

Sadly, until I saw the problems on the message board I was waiting to hear but seeing the flagrant rule breaking for a qualified study I decided it wasn't anything I was awaiting. AND like the PP said, as well as the website for hapcaps the results would not be something you'd see in such a short time. It was really such an amaturish study I'm actually embarassed for them.

IMO

Like any research, it means nothing if the supplements are not like for like. I wasn't expecting changes in intellect, growth, facial features or any of the other strange things, some people have linked to vitamin supplements in our children. What I wanted, was a long term protective factor for my sons immune system, for the anti-oxidative effect and to hopefully reduce some of the potential negative effects at a bio chemical level of having an extra chromosome.
In the UK, there's lots of research in the news re anti-oxidant effects of blackcurrants and other foods, protecting against cancer, Alzheimer's etc. I give my son Nutrivene D, which is not the same mix of supplements that was used in the trials anyway, so the results mean nothing to me, unless they trialed Nutrivene D. Another point to consider, this was not a long term study and subject group started with young baby's.
My understanding is the main slowing in our children's development often comes later, is this possibly due to a build up of the additional chemicals produced on the extra T21 or what?
I don't obsess about him getting it at the correct dose everyday, but every bit helps has far as I'm concerned. Its a personal choice at the end of the day. I see it just as a special multi vit for DS, I take mine and he takes his.
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Maxine UK. Mum to Elliott 16 and Dominic 6 DS.

Maxine, I agree 100%.

Kayla

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Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

I have to say I am also in complete agreement. Like you have said, they have their study results. I only know what I have seen with AJ. He has done very well on NurtiveneD. He was having some reflux issues about a month back, and we quit using the formula for a few weeks, while waiting for me to call the company and then they sent out a different formula for him. During that few weeks off, his OT noticed a marked decline in him...and she was completely unaware of the fact that he was even on the supplement, much less that he was temporarily off. She was so concerned about his regression, that she wanted to schedule a PT session, which previously had been deemed unnecessary at this point in time for AJ. When she returned the following week, she noticed a complete turnaround in his progression. He had made up what he had lost and more. Again, I hadn't told her that he was back on his NutrivenD for only a few short days.

I know this is getting long winded, but I want to share another detail. The week before, the OT commented she wanted AJ to start some speech therapy, as she just didn't feel he was vocalizing as he should be. Well, last week I took AJ to a funeral. He was talking, talking, talking to me. I finally had to put him over my shoulder so he couldn't see my face, because his banter and laughter was discupting the service. The OT comes back this afternoon. I can't wait for her to listen to him chatter.

So yes, I understand my experiences are completely anecdotal. But I know in my heart what I am seeing here.

That's my $.02 worth.

Ibby

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Ibby
Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

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