Tuesday, July 5, 2011

Cramps... again

The leg cramps seem to be back in full force. Wake her (and I) up in the middle of the night a few times a week back.

Recently she has had an increase in both rolling her ankles AND in severe leg and foot cramps. Her pediatrician wants to chock it up to growing pains. Her neurogeneticist doesn't want to deal with this piece of her diagnosis. Her OT from school felt like her pronation was still under control. So we're not sure where that leaves us.

Do we seek out yet another specialist? Which kind of specialist would we even start with? Will she be back in the braces? Something else? These are the parts of a rare diagnosis that I hate. I can't simply jump online, do a search, and know exactly what to do and where to go. I have to rely on myself, the vagueness of the internet and gut. It's frustrating.

For now we are keeping her well hydrated and loading her on bananas in hopes that it helps. She goes back to the pediatrician soon so I am hoping he could at least point us in the right direction.


  1. How about the doctor who did the splints? Is that your orthotist? What about a rehab doctor? Do you have those? Anyway - it's not just true of a rare diagnosis, even with a REALLY common diagnosis like ours, brain injury, it's different for every single child, there's no one course of action, and what works for one may not work for another - so the same is probably also true for you. I agree that the trying, trying, trying of different things is tiring - I wish there were a manual! But, I guess there isn't for our typical kids, either. Sigh. :)

  2. You said it sister. :D Be it the "typical" kid in our house or the not so typical... nothing is manualized. :D

    We haven't been to a rehab doc before so that might be a good avenue. Her orthotist says that because she isn't really pronating too seriously the splints won't help in that area. Thanks for the suggestion!