Follow-up with Julie Ann

March 21, 2009 at 8:32 pm

First, thank you for the support and the Google link. It seems like the combination of MG and CIDP is very rare, but it happens (as if getting CIDP at 5 years old isn’t rare enough on its own). Julie Ann has been taking Mestinon for the MG for a week now and she seems to show improving strength. The hope is that we’ll we find that it’s been the MG and not the CIDP that’s been causing the more frequent weakness and be able to spread out the IVIG treatments again. It’s too early to tell. We are planing another broad round of testing in a few weeks to validate the dx and see how her nerves are doing.

If all this wasn’t enough we discovered this afternoon that she had asymmetric facial paralysis and couldn’t close her left eye. A trip to meet her pedio-neuro at the emergency room resulted in a dx of Bell’s Palsy. I guess all things considered, Bell’s Palsy is a good choice if you have to have a third auto-immune, but it scare me with a third A-I to think about what’s next for her. We’re lucky that she’s such a trooper, but she shouldn’t have to deal with this on top of everything else (especially in junior high).

I will say that I’m so thankful that we have a good neuro that listens to Mom and a hospital that will work with parents. Dr. Kerr and Dell Children’s have been God sends. I could write an essay on how much Dr. Kerr has helped us manage her treatments protocals; and the nurses on the 4th floor at Dell’s Children are so fantastic. While I wish we didn’t [I]have [/I]to know them all so well, I’m so thankful they’re there. As much as I’m stressing over this latest diagnosis, I read about so many others out there that struggle to find a good doctor that will take the time to listen enough to diagnosis them and I realize how lucky we are.