My daughter is 7.5 and began walking on her toes shortly before age 4. She just had surgery to lengthen her heel cords and also her hamstrings 7 weeks ago. Prior to the surgery, her right leg was casted for several weeks due to weakness and pain. She did not complain of pain ever prior to July really - and her first complaint was not pain, but that her feet were numb.

Her main complaint was actually never pain though, she was just always exhausted.

Currently, casts are off and we have moved from a zombie duck walk into more of a regular-ish gait, but her right foot is pointing out. Also, we are still relying on the wheelchair if any walking beyond a few minutes is necessary. Like, she can get around at home fine, but if we go to a store, she needs a cart or her chair to get through, she says the pain gets very intense and she becomes very weak - for lack of a better description.

Just concerned about the foot pointing out now (which has just happened organically) and the continued pain and weakness - which seems to be getting worse, not better. We have been to PT once and go back again in 2 days. Guess I am just wondering out loud here if this course is routine or not. The PT seemed very surprised we had not been to Neuro yet, at any point - she thought because of the numbness she should have had a neuro work up.

It is to the point where it is def affecting her daily life - this sounds silly I guess, but she'll choose to crawl around and pretend she is a kitty rather than walk, things like that. Does not want to leave the house. She used to beg to go out all the time so this is a real change.

Anyway, just looking for similar experiences I guess, and opinions on whether I should be pushing for a neuro eval. I'm not against it, just she's been through so much, I don't want to over react and put her through any more than necessary.

She did have MRI's pre-surgery, full spine (looking for tethered cord) and it was normal, but did reveal she has a short spinal cord - ends 3.5 vertebrae before it normally would.

Thanks

Hello there...

I'm really sorry that I really can't help you with your questions but I saw your post and wanted to just say "Welcome" to the NeuroTalk Support Groups. Even without knowledge of your daughter's overall situation there, I would take onboard the suggestion of her PT and have her seen by a Neurologist especially in light of the fact that her pain and weakness are getting worse, not better.

I wish you and her all the best. Hopefully some other members will have some suggestions for you.

take care