I have a science background. I went to PT school & then nursing school so have taken more biology & chemistry & physiology courses than I care to remember. Unfortunately I had little knowledge regarding an area of science that would've served me well after Reese's birth, genetics.
I recalled basic information about chromosomes & genes & DNA but didn't really understand how having 3 copies of the 21st chromosome would affect Reese. Needless to say, I've learned more about chromosomes in the past 13 months than I did through 19 years of school.
Much still needs to be discovered about how that extra chromosome affects development but scientists know far more today than they did even 10 years ago. And many of those scientists describe Trisomy 21 in terms of a metabolic disorder. To oversimplify, the extra chromosome causes an overexpression of genetic material resulting in biochemical abnormalities & an overproduction of free radicals.
Some theorize that supplements & other herbal remedies can help reduce or eliminate some of the problems associated with this overexpression. Nutrivene-D is the big name in the supplementation game & they have a special concoction formulated just for kids with Ds.
I am intrigued by this information. It makes sense to me that having 3 copies of a chromosome can result in metabolic disturbances. That extra genetic material has to be expressed in some way & I'm sure it explains some of the common characteristics of Down syndrome. My science-minded brain appreciates the fact that very smart people are trying to identify how that extra chromosome affects Reese & her pals. I also appreciate the fact that very smart people are also trying to identify treatments &/or therapies that will help improve the quality of life for all individuals with Ds. What my science-minded brain doesn't like is the lack of evidence-based research that proves the efficacy of these treatments. As far as I know, there aren't any double blind experiments that evaluate the efficacy & safety of Nutrivene-D (maybe they do exist - I just haven't been able to find them). Lots of kids with Ds are taking these supplements (I believe one site guesstimated the number to be ~5000) so there are a lot of parents buying into the concept. And some parents are very vocal supporters. I've read account after account about how Nutrivene-D was absolutely life changing, how their kiddo exhibited significant gains in speech or motor skills or cognition within a matter of days of the first dose.
These parents have no reason to lie. I doubt any of them receive any royalties from Nutrivene-D or any other company in the same industry. And if the results are as significant & profound as these parents claim, then I'm even more intrigued. But I hesitate to put anything into my daughter's body that hasn't been tested & retested & approved a million times over by the FDA.
So, I guess the whole point to this post is that I'm not really sure where I stand on supplements. In theory, the whole idea makes sense to me but in reality, the territory is still a little too uncharted for my liking. And in no way do I consider myself an expert on the subject. Lots of moms & dads out there in blogosphere are far more educated on the subject & I enjoy reading about their experiences. I have no doubt there will be more definitive research on this subject in the future which will make my decision whether or not to supplement a much easier one.
Last but not least, a few words on vaccinations. I am a FIRM believer in vaccinating children. I will argue against the autism link until I'm blue in the face (and also show you article after article about how Dr. Wakefield has been proven a fraud & all conclusions of his studies have been debunked.)One of my first questions to Reese's pediatrician during her initial visit was whether or not she would be on a regular vaccination schedule. (I had read that some of our kiddos do better with a modified vaccination schedule, possible due to an immature immune system.) He was unwavering when he said yes & so Reese has gotten every single one of her vaccinations on time. She also received the Synagis vaccine last year during cold/flu season to hopefully prevent RSV which added six more shots to her regime. Thankfully, she's had absolutely no problems & we will continue to keep her on a regular schedule for as long as possible. That being said, I know a lot of parents have their kids on a modified schedule & it works just fine for them. I don't think there's a right or wrong answer as long as the vaccinations are being given. Okay, enough of my soapbox.
Parents make tough decisions every day regarding their kid's health & well-being. Having a child with special needs makes those decisions a little tougher & often leaves me feeling overwhelmed. I trust science but I also trust my gut and think between the two, Reese is gonna be just fine.
No comments:
Post a Comment