Discussions that mention botox

Cerebral Palsy board

Hello all. New to the board. Been reading various posts and it's been incredibly helpful, so let me start out by saying thanks.

My son is 11 and has Spastic Diplegia. We've been lucky. It's relatively mild. He's a very active kid - has a black belt in Taekwondo and plays goalie on a lacrosse team, and he's a great kid.

He's been in PT since he was 10 months old and we have had various courses of botox over the years. He wears AFO's almost every day and wears an afo with a knee immobilizer at night.

We've reached a point where our orthopedic surgeon is recommending surgery - gastroc and hamstring lengthening. While my son only walks with a minimal crouch & bounce, he feels that there is a fair chance that it will get worse as he goes through growth spurts during puberty. As I've said, we've been lucky and he's really active - so the last thing we would want to see is him losing any ability. So not only will the surgery help his gait and posture now, it will also help prevent any worsening - so it would seem.

On the flip side, his PT says "He's so mild, why would you want to mess that up by operating on him?"

So we have some disagreement in our team. Unfortunately, because he is, indeed, "mild" there is no cut-and-dry answer here. If he was worse, the decision would be easier, and if he was milder, the decision would be easier.

So I'm hoping you all can help with a few questions:

1. Did any of you experience yourself or your child getting "worse" as you grew? Is there any validity in our surgeon's concerns?

2. What experience have any of you had with gastroc and hamstring lengthening? I see a lot about heel cords, be he's not having that. What was the surgery like? How was the recovery? Have you shown any improvement?

3. Lastly, for you parents out there, how have youcoped with these "should i or shouldn't i" dilemmas?

Thanks for all of your help!

Hi, Bill,
You are raising a lot of good questions about potential surgery for your son. We have been through this recently, so I'm happy to share what I can.
Our son is 15 and has spastic diplegia. He walks with crutches, but has great stamina and could cover a couple of miles pretty easily. (He doesn't need the crutches indoors). He did all the usual CP things--AFOs, Botox, serial casting, leg immobilizers--over the years. As his orthopedist predicted, he began to develop more of a crouch in his knees as he reached his adolescent growth spurts. His doctor, a nationally-known orthopedist, thinks kids like this should not be operated on until the crouching is well underway, since you can really only do the hamstrings once. Do it too early, and the kid might grow a lot more and start crouching again. Yet, as you wait, they can be getting uncomfortable from the crouch. In our son's case, the surgeon decided 14 was the right age, after he had gotten to about 5'3" and his knees were getting pretty bent. The surgeon also believes in playing it very conservatively. He'd rather go back and do more later than try to do it all at once. This turned out to be a great approach, because while we'd all thought he'd need his heelcords done as well as his hamstrings, once they did only the hamstrings, the heelcords seemed to take care of themselves. (His feet are now totally flat). He was immobile for a couple of weeks after the surgery, very tired for about three months, and not fully back to strength for nearly a year. His legs look straight as can be, he's gotten out of AFOs for good, and isn't needing leg immobilizers so far. He was a little tippy for awhile, but lots of exercise and PT have helped a huge amount. The secret is to really follow a fitness program and keep him stretched out. So, think about delaying for awhile (no rush) and get him into the habit of staying in shape.
Meanwhile, I empathize with your parental dilemna about what to do. We've found it very frustrating that there's no one 'super-expert' to sort through the opinions of the surgeon, PT, pediatrician, footbrace tech, etc., to develop the perfect overall plan and tell us what to do. It's very difficult to know when we're not experts. Just keep loving the kid and following your gut feeling. You sound like a great parent.
Dear wlmar,

I guess different doctors have different philosophies on this. My son's orthopedist is quite conservative. He thinks the big issue about doing surgery too soon is the risk that the adolescent growth spurt will tense the legs up again, making a second surgery necessary. Given that the surgery leaves some permanent weakness, a second surgery is to be avoided if at all possible. His attitude is that you let the kid get into his growth spurt, monitor the increasing tightness or crouch (using botox, etc., to keep him as loose as possible) and do the surgery as late as you can so that the results will carry through the rest of his growth period. What you don't want is for him to have it too soon and then have to have it again. Our son's surgery was done at 14, when he was probably about half-way through his growth spurt. It worked out well.

Good luck! Let me know how this turns out.