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Old 03-26-2012, 11:06 AM   #4
Join Date: Mar 2012
Location: Oklahoma
Posts: 2
chaosncunfuzn HB User
Re: Need encouragement and hope

At the age your son is now, it really is difficult to determine how severe it will be in the future. You said that he may possible need feeding tubes. Is he able to eat now without any or much difficulty?

I'm sure that you have scouring the internet trying to learn more about this condition since he was diagnosed. I know I did. My biggest problem with that the information I found was usually the worst case scenario, and left me feeling more hopeless. Just remember that like no two children are exactly the same, no two cases of CP are exactly the same either. My daughter and my husbands cousin are both diagnosed with left-sided spastic hemiplegia, and while hers is mild, his is more severe. Same type, same family, different severity.

The most relief I felt was when talking to the neurologist that diagnosed her. He told me that CP is not a disease. It's actually the way the body physiologically manifests damage to the brain. It is not degenerative, and it the brain damage will never get any worse. It may seem, at times, that it is progressive, but that is only as your child fails to hit developmental milestones. Once that happens, the therapy can be adjusted to address that issue.

I am in that situation now with my daughter. She was doing really well, responding to therapy, and recently, she started digressing. What had happened is that she had a growth spurt, and the spasticity in her muscles prevented her left leg from growing at the same rate her right leg did. It feels like we are back to square one.

I'm not sure where you live, but where I live, there is a state program that offers therapy to disabled children. My daughter received therapy from them until she was 3 (that was the cut off date). With this program, eligibility was based on disability only, and CP was an automatic qualifier. We do have private insurance which we used for treatment, but also received therapy from this program as well. I liked this program because the therapists actually came to the house and worked with her. They incorporated items/toys that were already in my house into her therapy, and instructed me on how to continue this therapy with these items on our own time. You might want to see if there is a program like this offered where you live. Use any resource available to you. You have nothing to lose, and everything to gain.