Happy subject, I know.
I'm putting together a collection of stories (like Chicken Soup for the Soul) from parents of children with Down Syndrome who have experienced opposition when trying to get their children proper medical treatment.
I think it is very important that we speak up. Our children are amazing creatures, full of potential and deserve the very best of care. A collection of our stories can have a powerful impact on the community beyond our supportive little world, here. Our stories need to be told and shared. If no one knows about the medical discrimination we face, or just think that's it's an isolated case instead of a widespread problem, then it can not be solved. Let's stand together and speak up!
For instance, at my first visit to an endocrinologist, I explained that Jett had a lot of symptoms of hypothyroidism and his TSH was over 7. (Over 5 has been PROVEN to cause retardation in infants & Over 3 causes documented damage as well.) He said, "These numbers run high in people with DS." End of story. He refused to treat Jett's thyroid because hypothyroidism is NORMAL in someone with DS!!!!!!!!!
Of course this story is longer (I had to treat Jett's thyroid myself until many months later I finally found someone to treat him, but I have to pay out of pocket etc. I have an appt with a new endo early next week...)
If you'd like to share your story, please email me at email@example.com.
My degree is in English, with my concentration in Creative Writing. So, you don't have to be a writer--just a parent fighting the fight for our kids.
Mom to Jett, 14 months old with T21
Requests for Stories of Triumph
Sadly, the truth is there are doctors out there that won’t treat a child with DS as they would typical children. I went to a specialist because my pediatrician was concerned that Mariah might have atlanto axial subluxation. The specialist confirmed she had it (didn't look or show me anything). When I asked more about it he said "she looks pretty good but she has down syndrome, so she had to get something." I cried over the long weekend wondering how I was going to keep my active child safe. I then went into what I call Mama Mode and called a nurse friend of mine. She agreed I needed a second opinion. I found another specialist who said she didn’t have it. I was shocked. He went over carefully every detail and proved to me she didn’t have it. It's a lesson that even the "experts" don't have all the answers.
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