Monday, June 20, 2016

How to deal with contractures

So I need some advice on how to deal with this ongoing problem with Caleb's legs and feet. This isn't a new problem by any means, it really started several years ago after his tethered cord release. While this isn't a new issue, it has gotten worse over the last couple of years. We even did a full MRI last summer because I was convinced he must be re-tethered. Results came back stable.

This is as straight as Caleb's right leg will go. There is so much tightness at the back of his leg and knee. It took quite a bit of effort just to get it this straight. 

His right foot. 
It just kinda curls and you can't really get it to sit flat. It naturally flexes up and has gotten so tight. The look of his feet really bother him.

His left leg isn't as tight as the right but it is still a mess.

Left foot.
His toes do a weird thing on this foot.

This is the "go-to" position for his legs when he is sitting. They just draw up like this.

Same thing when he is is on his belly.

Caleb's legs never relax. Never. He has spasms in his legs regularly where they just jerk around on their own (usually the worst when he first wakes up in the morning). Even we he sleeps his legs jerk up. He sleeps all night with his legs so tight in the worst positions. Trying to get them straight is like trying to straighten a metal bar. They won't budge, they fight the whole way.

I have tried everything I can to help and I'm losing this battle ya'll. I put his KAFO's on him to force those legs as straight as I can get them. We have tried several things to use overnight while he is sleeping but because his legs are constantly fighting against begin straight, everything we have tried (night bracing, knee immobilizers, etc) all leave horrible marks on his legs and feet.

We see his orthopedic surgeon next week and I want to push for some kind of intervention. I'm tired of fighting a battle I can't win and I see how much this is starting to bother Caleb. I'm not sure what is the best thing to do here so I'm asking you guys to share your experiences. I just refuse to accept that this is just how things are and there isn't anything I can do to fix it. I'm not sure if tendon release is the way to go. I don't know if Botox will do a thing for this. 

Have any of you won the battle against contractures? Please share so I can go to his appointment next week with a plan in mind. 


Anonymous said...

Hi! So I have a different diagnosis than Caleb but also deal with contractures and muscle spasticity in my legs. I get botox injections every 3 months to help control tone. After the first botox injections I had serial casting to return my ankles to a more normal position. I'm not sure if any of that would work for Caleb, because I can walk, but I wanted to share anyway! Its also different because he's still growing - tone has the worst effect when you're growing because the tight muscles have a hard time adjusting to that growth.

Does he see a Physical medicine/rehab doctor? I know for cerebral palsy there are surgeries like SPML that help with this issue but I have no idea if they do it for spina bifida. I do know there are doctors that do that type of surgery in New Jersey and Texas.

Audrey said...

Just wanted to say that I'm sorry that you and Caleb are going through this. I'm sure that you are both frustrated and I know in our house, my son doesn't always know the correct way to explain how frustrated he is-- instead he acts out in other areas and it both frustrates me and breaks my heart.

My son Ben had a tendon release at his hips when he was 8 (he's 11 now). We had hoped it would help with standing straighter in his HKAFO's but there was not much change, although he laid flatter in bed which is when I mostly notice the tension. He is in a wheelchair full time now, as he just hated the struggle of walking and is much more independent this way. His muscles are fairly relaxed though and we combat the tightness with stretching exercises. I hope an orthopedic surgeon can give you more answers. Have you tried a different set of docs outside of those that you typically work with? Good luck to you, keep us updated.

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