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Cerebral Palsy Message Board


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Aln030482:

I was so glad to see a posting from you when I got on the board. I also got another one from someone else. My son is 18 months old. They found the brain damage with a CT scan & said CP when he was 5-6 months, by chance, they weren't looking for it. They wouldn't say nothing about his future, if he would walk, etc.. Finally at 15 months they did an MRI which showed brain damage on his gross motor strip (PVL & IVH). His neurologist said he didn't have huge hemoraging that went deep into the cortex of the brain stem. He is spastic diplegia. He is about 8 months behind on everything except for crawling & walking. For the crawling & walking, he can't. He does run all over the house in his walker (which is a normal walker from Wal-Mart), backwards & forward. He can lean on a coffee table & bear weight on his legs & hold himself up & play. He sits up in his high chair, etc.. without support, he just can't get into the sitting position himself. He takes steps wonderfully if you hang onto his hands & walk with him, one foot in front of the other. If I put him on the couch on his back, he will roll over on his stomach & slide down the side of the couch & lower himself onto the floor where he will stand. He rolls all over the place very well, that is his means of transportation if he wants something, if he's not in his walker. He has high tone in his muscles, mainly his legs. His high tone comes & goes, it's not always there. He was getting therapy once a week from our Children's Rehab Centre where I live, but his therapist went on holiday for the whole month of Aug & when she did return she told me her & her husband & family were moving out of town & I would get a new therapist as soon as they find a replacement, which was 3 months ago. I usually do his therapy anways myslef, but I do feel bad because I haven't really did his therapy faithfully for around 3 months. Does your son have any high tone or is he low muscle tone? I am so glad you replied back. I also got 2 other replies. It is so nice to read about other peoples stories & actually be able to ask people questions aboout their children. Thanks a million

Sherry
To Aln030482:

I am SO SO SORRY you lost your son's twin. I CAN'T even imagine the pain, & then to have to go through the diagnoses of your son. I don't know how you do it.

I am from Ontario Canada, Sault Ste. Marie. Are you from Canada or the US? I hope your son gets stronger. My son is the opposite, he has high tone, mostly in his legs. It's to bad my son couldn't trade your son some of my son's high tone for some of your son's low tone. Only in a perfect world. My son's neurologist told me that with these children they seem to plateau for awhile & then all of a sudden they do a whole pile of new stuff all at once & then they plateau again for awhile. I do find this is true with my son. She also told me that if by 4 to 5 years old, if my son is not pulling himself up (for example: like grabbing the top of the crib & pulling himself up to stand), he probably won't walk. I also took my son out of his crib at 8 or 9 months old because I found he was moving around his crib like a 5-6 month old would, but he was the size of a 8 or 9 month old so every time he would try to move he would either hit his head on the side of the crib or get his legs stuck in the rungs. He couldn't move freely. I put him in a double bed with the headboard, footboard & one side of the bed against the walls & the open side of the bed I put a great bed rail on it. It made a world of difference with his movement & I found once he knew he wouldn't hit his head & stuff he progessed quite a bit with rolling over, etc..

Do you do alot of therapy yourself at home with your son & exercises to strengthen his trunk muscles? Hope to hear back from you.

Sherry





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