March 20, 2009

Awareness Day


Today is Cerebral Palsy awareness day, and Keri over at Life of Logan is asking everyone to get out the word.

My own experience with CP is limited, but even a taste is heartbreaking.

A fact pulled off her site seems almost unbelievable, but with my own snipped of experience is rings true.

There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

At 3 weeks old, my nephew rolled over from his belly to his back. My first reaction? "What an amazing kid!"

When my sister mentioned it to her pediatrician, he instructed her to watch for it to happen again and if it did, to bring him in.

We later learned, because the little man kept rolling over, is that this is an early sign of Cerebral Palsy. I found that strange, since everything I understood about CP limited movement.

The little man was referred on to a Pediatric Neurologist, and was given the thumbs up. Since he's so young (now nearing the 10 month mark) they really can't test for sure. The doctor said it appears that he doesn't have CP, but that if more signs appear as he develops to keep an eye on them.

How frustrating that with today's medicine the best diagnosis my sister can get is "We don't think your son has CP." They at least have assured her that with his current skills, if he does eventually get a diagnosis - it'll be such a mild case that "even his wife wouldn't have to know if he didn't want her to."

I remember how scared I was during the whole process.

Only he's not my kid.

And he probably doesn't have the disease.

I can't tell you how much I admire Logan's parents - they must be some incredibly strong people.


  1. That sort of "diagnosis" sucks! Brent's mom has MS and they diagnosis that mainly through ruling out everything else. To me, those sort of dianoses are a bunch of crap!

    - Katie

  2. That's kind of scary! My dd rolled over at two weeks and I just thought she was athletic! I'm really glad I didn't mention to the doctor or I might have been needlessly scared. (She's 2.5, so no problems.)

    I think a lot of times doctors are "looking" for things that are really just nothing. I'm sorry y'all had to deal with that.

  3. Wow! I keep thinking that with all the technology we have we should be able to find more cures (or at least better preventatives) to diseases...can't the drs and politicans focus on that more than legalizing abortions? Doesn't that make more sense?

  4. Wow, how scary. I really know nothing about CP, that must be so hard for your sister to just wonder and worry. I'm glad they don't think he has it.

  5. I'm so sorry you all had to go through that! Thanks for stopping by my blog. :)

  6. Sorry to hear of your sister's experience with the doctor. That makes no sense to me what so ever. Especially since my second born son rolled over front to back at two weeks old and at 22 months old he is a typical kid. Some docs tend to take things way too far and it's so not cool.

    I want to say thank you for helping spread CP awareness! It means a great deal to me. Hope you know how much it is appreciated!


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