Matt saw his PT 2 weeks ago with the plan to do stretches, add night splint and more regular use of afo and to return in 3 months. If there hasn't been noticable improvement in that time frame, I'd agree to a botox consult to be followed, tentatively, by serial casting.

Well, instead, I called the PT and asked for an appt this week. I don't see botox as being necessary but I don't like how his gait has changed with the regular use of the new afo.

His upper body used to posture on the right side when learning something new or running but hasn't done that for ages/years. Now he kinda holds his shoulders up, his arms slightly out and bent out at the elbows with his lower arms more or less hanging down limp (slight bend at the wrist). kinda ragdoll like.

In addition, his heel isn't striking the floor on the right side and he kinda shuffles along, or lilts if that is actually a word.

Matt is a right hemi but always so mild most wouldn't notice much of anything. not anymore.

so, people talk growth spurts but that doesn't really seem to be the case right now.

I don't know what I want to ask the PT. I just want to point my finger and say look what is happening!!! what do we do?!!! but if she goes back to botox my dh won't be pleased and I don't yet believe that is the right thing to do.

Is this a common posture for an 8yr old with mild cp?

i've got horseback riding in mind as a help but winter is coming........

??????

lucinda

have you considered getting in touch with shriners? they are a great resource for a 2nd opinion and are great for giving ideas.

don't think we have shriners here.

anyway, going this afternoon to chat again with the PT.

will comment afterward.

lucinda

Riley did hippotherapy for a while when she was younger and it REALLY REALLY helped with her balance and helped make her movments more coordinated.

Hope you get some good advice from the PT today.

no real advice from the PT. She said he measured the same (not tighter) but said everything I described indicated an increase in tone. Maybe it is increasing but all his activity is keeping the muscles themselves on par.

So, he has to compensate for the increase in tone by keeping his arms up more to guard himself from falling and skipping/running instead of walking to keep himself from tripping over his toes but because he is doing these things but still staying active, doing the stretches, orthotics and night straps, he's keeping on top of things overall.

So, the plan is to add in a gator... a foam piece velcroed over the leg from thigh to calf that keeps the knee straight for an increased stretch, at night with the orthotic and pull strap and for an hour or so a day as well and with everything in place, hopefully we can gain 10 degrees range in his ankle by January. If not, I agreed to a botox consult at that point which would be followed by serial casting.

on the plus side, Matt's seizures have stayed away for 3 months now as far as i can tell. and as I read others' posts, i'm even more grateful to get a break from those. They are so heartbreaking...and for those who know, i know you'll see that as awesome news.

lucinda