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getting worse?
By Karlene P. on Fri Mar 2, 2012 at 1:01 PM EST
Ethan was diagnosed at 10 months, he walked at 17 months and he is now almost 4. It seems as though he is getting worse; he walks worse now than he did when he first learned. I thought CP didn't get worse or better; I understand we will have phases but it seems to progressively be getting worse. What has it been like for you?
By Aaron D. on Fri Mar 2, 2012 at 11:45 PM EST
My 8 yo daughter showed first signs of delays at 2 1/2. She didn't crawl much, then had the hardest time figuring out how to pull herself up to stand. And then she was running! She pretty much skipped right past walking, and mostly just ran! I remember at the age of 3 or so, having to jog behind her on the grass at a park to keep up with her.

She wasn't diagnosed with CP until almost 3 years ago. She inexplicably stopped running a few months before that. Now, her walking is very deliberate, and her balance is very unsteady. As a toddler, she used to crash into me (playfully) like a tank. Now she is concerned about getting knocked over if anyone (or animals, like a dog) moves near her.

I believe that my daughter is experiencing a degradation in her neuro-motor processing abilities. For the past two years, she has had inexplicable, progressive seizures. These began with leg tremors (that looked like shivers from the cold), now to more and more frequent tonic clonic seizures, with her "checking out" for sometimes up to a minute, with a whole range of involuntary muscle spasms during that time.

I cannot say that this is typical of CP (there are different severities), but this is my daughter. We are undergoing another neuro diagnostic battery (MRI and EEG) in the next several weeks. This was done within the past two years, but nothing significant (or explanatory) has appeared in any of the testing to date. It's like somewhere inside that cute curly head, there is a spark plug gone bad, or a fuse that has shorted, and, in spite of best efforts, it can't yet be determined which one.

I realize my comments aren't uplifting, or necessarily helpful, but it is nice to make a connection with someone facing similar circumstances with one of their little people. A shared prayer for the little ones, and to their loving parents, and to medical advances, and to 24 hour Pep Boys (just in case).
By Karlene P. on Thu Mar 8, 2012 at 8:06 AM EST
It is really nice to know we are not alone....thats why I started this group. Thank you for the response!