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Botox for mild CP??am not sure what to do....

1 reply

AAW · 05/02/2009 14:31

Botox has been suggested for my DS who is 3.3 and I am really not sure what to do. He is hemiplegic on his left side and wears an AFO splint. He is very mobile and walks well apart from looking slightly awkward. He tends to weight bear on his right side and both feet roll in slightly. His calf is tight and it is very difficult to stretch his ankle, but I think that it is difficult to gage exactly how much is tightness and how much is resistance as he tenses up as soon as I try to stretch him. We have an appointment with his consultant to discuss botox next week but I get the feeling that he is very pro botox ifkwim and I really want an impartial opinion (his OT at nursery is surprised that botox has been suggested). I really feel quite worried about this. DS seems very young to me to be offered botox and most of the case studies I have read seem to refer to children with severe CP?. Please help any advice gratefully received.

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springlamb · 05/02/2009 17:27

DS had botox at 5 and 6 for calf tightness. He was sedated whilst the injections were done. It wasn't too horrific or painful. It had a very good effect on his walking short term, it was much more fluid and his foot placement was better. However, botox is a temporary solution and wears off totally after about six months. But each time he had had another six months of good movement and range. After the second treatment it was decided that further botox would knock out muscles that would end in a detrimental effect. So we had no more.
He's 14 now and is still walking. I suppose I feel that botox was worth it because it had a direct effect on his mobility at the time and I think the two treatments gave him an extra year of things staying loose and a good range of movement. The cp will never get better, we can only help him to 'hang loose' for as long as possible.
It's definitely something to consider.

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