Wednesday, May 6, 2009

Supplements, Should We?

Right up front let me say that no amount of supplements is going to "fix" your baby’s Down syndrome. That said, can they help your baby be all he can be?

NuTriVene - D Supplements
The Trisomy 21 Research Foundation recommends a daily set of supplements for people with Down syndrome. These supplements can be given to infants. When you google the foundation you will see that it seems to exist only to support the NuTriVene online company that sells the recommended supplements. This in itself doesn’t make the product bogus but it does make one question the foundation’s recommendations. After all, they are self-serving.

The NuTriVene website does have a page with some interesting research about the effects of an extra 21st chromosome on free radicals and proteins in the body. How much of this research can be independently supported elsewhere? Um, I couldn’t find much. Because it is a supplement, it doesn’t need FDA approval and the FDA site has zippo information about it. But, then again, the FDA doesn’t say anything about Flinstones either.

Taking a Chance
I grew up on vitamins, cod liver oil, and anything else my mom believed was healthy for me. So after some prompting from her, which I overtly rejected, I secretly popped for the $56 powdered stuff and tried it out.

Ok, now I hear some of you drawing in your breath, and thinking loudly, "How could she give her baby some who-knows-what concoction?" On all other counts, I am an organic ds.mama and nothing questionable goes in or on my babies. However, my youngest baby, who has Down syndrome, spent 16 weeks at birth in the hospital and you should have seen the stuff the medical community gave her. Drugs upon drugs, intravenous plastic tubing, iron supplements, and conventional creams and baby care items. They even tried to feed her corn oil but I stamped my foot down on that one. After all that, I figured what’s one more thing?

The Process
I measure a little less than the recommended amount of the orange powder (still wary, I guess) into about 2 ml of baby formula and suck it up into an oral syringe. Getting it into her is tricky and I do it on her changing table with a washable mat under her. I do this when she is wearing her birthday suit because the supplement leaves bright orange stains on any material. I squirt the awful tasting stuff (at least I thought so) into her cheek pocket a tiny bit at a time. She doesn’t complain.

The Fuzzy Results
After a couple weeks of this, my mom (who I hadn’t told yet) asked me if I was doing something new because my daughter was "so alert" and seemed to be progressing faster. This was hardly a scientific study but it was a hmm... moment. Since I started Omega 3 oil (more on that another day) at the same time, I can’t say one or the other was responsible for any perceived results.

I can say that my daughter left the hospital at 16 weeks old, after major heart surgery, not even able to hold her own head up or reach for a toy. She had also been sick with multiple bacterial infections in the hospital. She made it through last winter with no ear infections, no bacterial infections, no respiratory infections, nothing but an occasional cold. There are lots of other factors that can account for her good health and strong development since then. She is primarily breastfed, she had a visiting nurse administer the RSV vaccine every month, I am a Purell junkie (16 weeks in NICU/PICU will do that to you), she has the benefit of wonderful Early Intervention therapists, and her heart fix was perfect.

Still, it’s possible the supplement is beneficial to her. So, I give it to her whenever I remember and have the energy for the mixing, delivery, and clean-up process.

Your Turn
Am I the only mom out here using this stuff? If you have used it, can you comment on your experience with it, good or bad?

Read Beth's post: Targeted Nutritional Intervention--Vitamins


  1. I was wondering about Nutrivene too, questioned it in my post "P is for" but got no comments. In that same post, I also wondered about another product called Fruit Ease and the role of serotonin in constipation. The only information I found is on a site called Einstein Syndrome. I have a link to the same page in my post "P is for...". I hope we get a few moms to comment on your post too as I would like more information myself.

  2. I've been wondering about it as well. Please keep the info coming. I hope other parents will post their results.

  3. hi,
    we use nutrivene D and also piracitem, fish oil, and pro-biotics
    Our daughter is doing very well. People say she is so alert and so interactive. We hear this all the time. I laugh when ignorant but loving people say, " well she must have a slight case of it"
    she is also gluten, wheat, dairy and refined sugar free as testing of stool indicated that she could not digest this stuff. she is a meat and veggie kid ( 80/20 veggie to meat ratio)
    we used to have issues with constipation ( really big issues from birth to about age 11 months) and now we have none Getting her off things she can not digest was really helpful to her. Rob from international nutrition has spent hours on the phone with me over the last two years helping me understand how to help without harming. What to try and when not to waste your time or money (and there was never any fee)
    doing blood and stool work to see what she needs or how she is doing and then to adjust is working for us.
    we also give meggie a digestive enzyme
    she had her first " bug" at 19 months of age which was RSV. It was ten days but no ear infections and no antibiotics. And she stayed home with us. My 13 year had it as well. She coughed for 5 weeks. our meggie was done in 10 days.!! She is now two years old and is speaking well for her age. she says things like " please turn on" please play"
    I think that the Nutrivene helps her stay healthy so she can learn, but parents who usually use nutrivene are parents who also do things like cranial sacral. ( we've done that as well)
    Meggie has been on a reading program since age 1 ( doctor Robert Titzer) and her speech Therapist is amazed at her progress.
    She also has learned sign language beginning at 6 months of life.
    Do all you can to stimulate their brains as it all helps so very much
    hope this helps. Always remember. "above all do no harm" We do blood work to make sure she is fine ( and she is) and we are very happy. Keeping up with what is going on thru blood and stool is so helpful . we use the metametrix lab that looks at the DNA of the stool to see what she is digesting and what is there as far as normal or opportunistic flora Also, my husbands undergrad degree was cell and molecular biology so the nutrivene theory made sense to him.

  4. Anonymous,

    Thank you for all this info. It is soooo helpful. I am really interested in the things you talked about. Maybe you could email me (in my profile) and share some more on these ideas...?

  5. I haven't heard more from Anonymous yet but I wanted to share some links that provide information about piracitem, craniosacral therapy, and the Metametrix lab. The links are in order and you may have to copy/paste them into your browser.

    I probably wouldn't try the "smart drug" or the craniosacral therapy at this point in time but to me, it was worth a peek, just to understand what they are (and why I wouldn't try them).

    I might try the lab... it could be interesting to find out what's in baby poop, lol.

  6. Glad I found your blog! My daughter has been on Nutrivene for 13 years now, and it has been a wonderful experience. My blog has many articles about nutrition in DS. Go here. There are many articles there about the science. The article on that page about an introduction to TNI links to research elsewhere, particularly on the RiverbendDS site. My own daughter's experience with Nutrivene is here.

  7. I just found your blog and read down to this post. You've got some wonderful information on your blog, and this conversation about NTV is valuable to many.

    My daughter (11, Ds), has been on NTV-D for 9 years. We also use Gingko and fish oil. We have not, as yet, pursued pharmaceuticals (Prozac from the Changing Minds Foundations nor Piracetam).

    When we started with nutritional supplements we were not expecting to see any real changes in our daughter's development. She had been developing well (signed and spoke her first words before age 1), was attentive, and an early reader (read her first word at 20 mos). This after being in the NICU for over a month and still having pulmonary hypertension. Soon after she had her heart surgery at age 2.5, we started with TNI. We were looking for long term results--perhaps limiting the ravages of Alzhiemer's disease, or just keeping her healthier longer. She had many respiratory illnesses as a preschooler, but by the time she was 6 her immune system seemed to be stronger. I do not see any correlation between our using NTV and Hannah's successes (or failures for that matter), but I also don't see any adverse effects either.

    If a family is interested and can afford TNI, then I don't see any reason not to pursue it. If you've got a baby/toddler, then use the microencapsulated formula, Once a child is about 3 or 4 they can usually start with the capsules, which make life so much easier!

    I have been planning on posting about Nutritional Suppplements, but haven't quite gotten around to it. One day soon, I hope!

  8. I have been researching Nurtivene-D for some time now and am glad that I found this post. Thank you for sharing.

  9. Hi,

    I have been using NV-D on my daughter Ava since four months old. She is now 13 months. I cant say for sure that the vitamins have done wonders, BUT, she is certainly more alert and very focused. She is also hitting targets 6 months sooner. She doesnt get infections. She seems to be doing very well, so I am carrying on with them all. I'm not using Piracetam though. Anyone got any thoughts on this?


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