Discussions that mention botox

Cerebral Palsy board


My son has had serial casting post botox. He was very young but from what we noticed it was good for stretching. Can you tell me more about the hamstring lengthening? They are talking about trying that with my son if another round of botox doesn't work.
Hi I am 38 years old, I didn't learn to walk until almost 3 and wore the old fashioned metal leg braces (that was the technology available back then) I wore the braces and used forearm crutches from age 3 to age 6 then...

I have had the hip flexure release surgery (in 1975, age 6) and the achilles tendon surgery (in 1981, at age 12), as well as a surgery to straighten a horribly bad hammer toe caused by walking on the side of my foot.

When I was little..and scared, the surgeon asked me: "now don't you want to be able to run and jump and play just like all the other little girls?" And of course what did he expect a 6 year old to say!!! Supposedly according to him the purpose of all this was to make it so I could walk without all the equipment. In my late teens and early 20's, I began experiencing trouble caused by the flu but it acted like spinal menegitis...I was paralyzed from the waist down on both sides with no sensation from mid thigh down. I did learn to walk again, with fore arm crutches, and the sensation did come back, although I wish it hadn't...now my legs feel like the way your foot feels after you've been sitting on it a while and you try to stand on...the tingling and stinging never go away it's 24/7. However,there is no "proof" that the infection caused any permanent further nureological damage. To make long story short since then I have gone from using just forearm crutches,to crutches and AFO leg braces, to leg braces with walker with using either a manual chair or electric chair outside of home. I began having more difficulties with falls in October of last year, and I fell and split my scalp open Memorial day weekend, (even the emergency room doctor said that he thought I would have had brain damage from the fall, thankfully I'm fine). Since then I have been afraid to walk anywhere, even in my own apartment.

I am getting worse and no one can tell me why. No amount of PT can help me at this point. I believe the reason I'm getting worse is all the years of walking in a way that the human body is not natural meant to walk and my bones, muscles and ligaments are deteriorating as a result of the "abuse" and I never was able to run, jump and play like all the other girls.

My mom of course blamed herself for my CP, caused by premature birth and she, as a result of all the turmoil of the events of my childhood...became an alcoholic and she uses me and my disablity as an excuse for her drinking. She is very verbally abusive and often physically abusive toward me when I see her.

My current doctor has recommend that I try the casting and botox for my ham-strings...I have declined, because for me all the stuff I went through when I was little...to me I was physically and psychologically tortured for no reason, I'm back to where I would have been if the "experts" had just let nature be what nature was meant to be from the very beginning.

My dad says now that he had misgivings about the treatment from the very beginning but he didn't feel he had the right to go against medical advice. Things have changed now, for parents, I know...hopefully the parents out there are being more proactive, rather than just trusting in the doctor psuedo demigod want to be's out there.

When the parents of the kids today ask me what I think about any "treatment" for their child I encourage them to concentrate more on their child's intellectual development, emotional development, self-esteem and educational needs...something I now wish my parents had done more of from an early age, rather than trying to make me more physically "normal".

I realize that for each of us, for each family the choice is purely a intensly personal choice...and really I have no right to have an opinion of your situation...I think you were wise to wait until you could make the choice for yourself. For all those parents out there I encourage you to begin educating your child on what CP is, how it affects them, and what ALL the options for treatment are as soon as possible. Whenever, possible wait until your child is old enough to actively participate in making such a decision...a decision which will affect them for the rest of their lives...before acting.

Squeaky,

To answer your question: Based on my own personal history and experiences my answer is a resounding NO!!!

Again, I truly have no right to comment on your situation but upon finding the site today and stumbling upon your posting...I guess it just touched a cord with me.