Wednesday, April 21, 2010

Just think MOM...

On facebook I join causes for Down Syndrome…because I yearn to know more…it is a compulsion…I joined one that is making me take pause…I am sure it is good for some…I am sure they do great work…and science and progressive thinking is something I encourage…but this Changing Minds Foundation. Treatment and Research for Down Syndrome…is a bit leery to me…and makes me feel dirty and sad…this is what they think I should give Maddie for her to be “high functioning” it is called PROTOCOL a cocktail of Ginkgo Biloba, Prozac, Focalin XR (ADHD Med), Phosphatidylcholine, Body Bio Balanced Oil, B12 and Folic acid… seems very scary to give to my 11 month old…and only have 6 years worth of data…first thing you see on there website is that Ginkgo Biloba is proven…just a few months ago on the news they reported that this was not the case…I saw a post (a "success" story)about a 3 month old that started taking PROTCOL and by 7 months she was keeping her tongue in her mouth, curious, and propping on her arms…REALLY that is it! Maddie was doing all that without the cocktail…I saw a 60 minutes report on Sunday taking about stem cells and ALS…this was an investigation on the person selling “the cure” for ALS …it was a fraud…and $40,000+ later there was still no change in his body…the person who was selling “the cure” said “well what if it does work?” …and of course this is what I first thought about when first saw PROTOCOL…this statement scared me…I asked several people about PROTOCOL…people I trust Doctors, professionals…and they gave me a look with a raised eye brow…and said what are the risks? I could not answer that because I could not find the risks on the website…and lets face it I did not care about the risks…I wanted to “fix” my Maddie…then yesterday I was asking another professional and person that has a child with Down Syndrome what they thought about PROTOCOL…I said what I have been REALLY thinking… I want this cocktail to do something it cannot… I want it to take away her 3rd chromosome…that is what I want…it is not going to happen…we all know that…and to sell that this cocktail is going to “fix” my little girl is just false hope…my Maddie will learn to walk without Prozac…and she will read without Ginkgo…she may or may not drive…she may even get married…but this medication will not “fix” her...only the people that impact Maddie’s life will help enhance her…that is her family, friends, OT and doctors…and most of all Maddie…she will determine what and where she goes…I am at peace in my mind to no longer follow this foundation…I am going to stop searching on the ways to rid our family of our perfectly enhanced little girl…and accept that we are going to be ok…

5 comments:

  1. Well said. I don't subscribe to these concoctions or protocols, either. Sammi is doing just fine as she is, and in her own development has overcome certain things as a matter of course (like her tongue, etc.), so how could anyone prove that the vitamins/meds/whatevers are the cause of their child's reaching certain developmental milestones/enhanced cognition/better memory/etc.? I know this is a controversial topic so I won't say more, but it's up to everyone individually to decide what they think is best for their kids. I certainly don't judge anyone who decides to try something new, but it's just not for me. If it's not proven to do something and if it's not being prescribed by Samantha's geneticist, then I don't want to take any chances of other issues arising as a result.

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  2. I know, I joined the page too but I really question all the meds they are giving at such a young age and like you, I was not impressed by the 7 month old.

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  3. You have to be so cautious with fix-all's. One vitamin therapy for kids w/ Ds claimed to alter their appearance (their noses grew longer and their ears were shaped "better"). Give me a break! I was angry at the woman suggesting my son wasn't perfect! Our local doctor expert on Down syndrome didn't support any of the vitamin therapies out there and said they're a waste of money... possibly even toxic. Everyone has to decide for themselves... it's so easy to get sucked in to thinking we're not doing enough for our children and that's one thing I'll probably never know for sure. I can't do a blind study on my own son... so, we just do what feels natural to our family. I don't blame others who want to try regimens that might help, but I always approach everything with serious skepticism and caution AND an eye on my pocketbook. Good luck weeding through it all... Do what YOU feel is best.

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  4. That was an interesting post. We all want the best for our kids and anything that claims to help them along or benefit them in any way sounds good at first. But if it doesnt sit quite right, or feels a little off we should listen to those feelings cause as Mothers I think deep down we know.
    I really look up to all you Moms on here that are ahead of me in all this. I am thankful for posts like this and for people adding their thoughts and comments, I really respect so many of you and your opinions. You guys are making my journey much easier, so thank you all!
    And Maddie is adorable!!

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  5. Hi Kim! I found you on Grace's blog. I can't believe it's been almost a year since I saw you and your family... crazy! Hope you are all well! keep in touch!

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