They're back! Abby was having terrible cramps in her feet and legs a few weeks back but luckily they went away before we had to do anything about. I chocked it up to growing pains or something like that but it looks like it may be more. She woke up from nap yesterday with shooting pains in her foot and lower leg. They got a little better but an hour later she was in agonizing pain again. She points to a specific spot and says that is where it hurts but we have no idea if it is bone or muscle or ligaments or what. Honestly I am not even sure where to start in terms of a doctor. I guess I will contact her neurogeneticist in hopes that they can give us some guidance.
One of the fears at this point is that she will need to go back in the braces. I was so hopeful that we were done with them for good. Guess we'll see.
This is just another example of the frustrations of dealing with a rare diagnosis. If she were a typical kid her pediatrician would be able to handle this. Because she has a rare diagnosis none of her doctors want to speculate. They all want to send her to specialist after specialist after specialist because they are afraid to be wrong. In the meantime my three year old is in pain. Such a huge frustration for all of us.