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Posted by Sherri-Lyn on January 27, 2000 at 13:40:03:

In Reply to: Re: 9 month old diagnosed with CP today posted by Sue L on December 18, 1999 at 23:33:39:

I'm 28 and have CP, also confined to my legs. My first suggestion is to have your child see someone who will do more than a fifteen minute assessment. I have spent 15 years going from one doctor to another, with none of them knowing what to do for me when the CP caused problems. Recently, I saw a new doctor. He spent 45 minutes doing his initial assessment, even though I already knew what I had and have been treated for it (surgery at 4 1/2, and physio). Get a second evaluation, and more information. (I'm not suggesting the doctor was wrong, just that you need more info). My mom was also told I would never walk - but I did at 2 years. I rode bikes, played volleyball, went hiking, drive a car, and have a child. Contact your nearest Cerebral Palsy Association for more information and support. The group I belong to is great. I hate to say it, but be prepared for a long, hard fight to get your son the treatment he needs, and don't accept the answer that there's "nothing we can do for him" . Treatment needs to continue throughout his life. Mine stopped at 16, and shouldn't have. I now have to have my heel cords stretched again, when it should have been done ten years ago. GOOD LUCK.


: My heart goes out to all family's given this diagnosis. My daughter is now 6 years old. She was a 26 week premmie. I found out she had CP when she was almost 2 years old. Before that I was told give her more time to catch up since she was premature. You can't imagine trying to convince yourself to believe the doctors when you know in your heart something is wrong. I sat alone in the doctors office and like you given the diagnosis just like that - like I new all along. I managed to keep it together until I got out of the office and into my car, then I cried all the way home but stopped in time to break the news very gently to my husband and parents. Enought about that, the good new is I can speak from years of experience. Your children will improve everyday, get the right doctors and the best therapist you can. Samantha has surprised everyone, she has never given up and will always try to do something - even if she has to modifiy it. She could not sit up at first, and walking to her was done on her knees for a very long time. The funny thing is she could move faster than I could. She has had to have surgery 2X but with out the surgery the Doctor told me she couldn't possibly walk. She had lenghtenings on her achilles and hamstrings. (She has CP confined to her legs) She had the surgery at 2 years old and started to walk with AFO's by the time she was 2 1/2. The Doctor who did the surgery is the best in New Jersey. She had to repeat the surgery at 5 years old, due to her growth. But within 3 days she was back at school and doing great. Today she is active in the Brownies and her greatest joy, is her dance class. She may not do it just like the other girls but like her teacher says, Samantha enjoys it the most, always with a smile on her face. Please to all the parents given this diagnosis it is very painful, but it does not change the beautiful child you have. He/she can overcome and do anything they set their heart on. I would be willing to receive any e-mails with questions, tears, or laughter. Just like the encouragement you give the kids, I can do it for you. Parents need to be able to draw strengh from somewhere. Good Luck and God Bless all Families.
: : : My baby was diagnosed wiyh CP today. He is 9 months old. He moves around on the floor, and can get from room to room. He doesn't sit but he is starting to get up on all four's. They said he will probably never walk, this after a 15 minute assesment. Can they be wrong?
: : : I don't know what to do but cry!!!
: : : Kim

: : Our child was diagnosed with CP around 9 months and sounds to be doing about the same as your child was, the best thing to do (although hard to accept) is to get him all the help you can as fast as you can, with us it seemed that there was all this help out there, but, it was like everyone was waiting for someone to just make the diagnosis. Our child has made ammazing advances in a short time. If you don't like the help you get, don't hesitate to ask for others. good luck


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