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?
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.
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