The 2nd Annual CTF Walk was yesterday...and it went really well. It was fun meeting other families who are also dealing with Neurofibromatosis.The walk was a mile, just around a beautiful lake. My guess would be over 200 people showed up! AMAZING!
Lately--Rachel has been in screaming pain with her legs. She has been checked for the bone deformities that can often come with NF, but now I'm wondering if she has something going on.
We were just starting the walk, when Rachel begins to cry and point to her legs. "Mommmmy they hurt so bad!" I'd pick her up and piggy back her for a while, then let her down.
How many NF families have had to deal with leg issues with their kiddo? Rachel is 7, and has had no trouble till now.
I'm taking her in to the dr but wanted to see if anyone else's child has had NF related leg issues that were not diagnosed until 5-8 yrs old.
I hope they figure it out.. i wish i had an answer for you... i know that my back/hip stuff didnt start till i was 8 or so. but no answers as you know from me talking to you...
ReplyDeleteprayers being sent your way..