Discussions that mention botox

Cerebral Palsy board

My son is 3 years old and has CP (triplegic/hypotonic/mixed), and was previously standing on his own (only when we distracted him with a game or activity, and usually 30 seconds, but up to 5 minutes when VERY distracted), and walking a few (very hesitant) independent steps at a time.

His entire medical team (developmental ped & 3 PTs, including head of PT department for major children's hospital) recommended Botox for him.

They did tell me that once he lost the spasticity in his leg, he would revert for a while to being unable to stand/walk as well, but that once he rebuilt his muscles he'd do better than ever. (He had the shots mid-May.)

But he's SO MUCH more hesitant now, he won't even do it (stand or take steps). NONE of our old games/distractions are working, and he cries if he's left standing alone.

For the past several months, confidence has been a huge part of his difficulty standing/walking (learning to trust that he won't fall, or that it's not the end of the world if he does). But now it's coupled with an increased difficulty standing/walking, and so he won't even do his exercises. (We really put a lot of effort into making them very fun/enjoyable games for him.)

Anyone BTDT? Not necessarily Botox related, but a sudden refusal to do exercises, or lack of confidence? TIA
Hi there
Our son was just like yours at the same age. The botox does the opposite though - gives him the confidence to walk on his own, and as it wears off he loses the confidence again. Could be that things have just changed muscle-wise and it make take a wee bit of time to get used to it - how long has it been since injected? Our orthopaedic surgeon said quite often he sees they change and it seems worse before it is better again.
Hope this offers you some hope. We would not have independant walking without the continued botox I am sure.
After Botox my son is not nearly as stable with his braces but especially without. Since he is normally up on his toes after the botox the foot flattens and he is not used to that position - he falls backwards a lot. I do games and play with him holding hands or building towers and reaching for blocks with him right by me so he can get his bearings on the newly flat feet. He also walks MUCH slower after the botox.
Did your son's medical team ever discuss casting with you? My PT keeps on on research and told me that research has shown that repeated casting is as effective as Botox. I mention this because a lot of kids get more confidence to start walking when they are in casts. Plus the casts help stretch out the hamstrings and heel cords. My son was hesitant to walk, too, and took his first two consecutive steps while in casts. He may do fine without casting, but I just thought I'd mention it in case you hadn't heard much about it.