Reply To: Gracie-4 years old

July 26, 2012 at 3:50 pm

We just got out of the hospital. She now has been diagnosed with CIDP. Between her first and second hospital stay she was getting so much worse. She was unable to even sit up by the time we got admitted. I called down to the hospital three times to tell them she was getting worse and they gave me the run around that I was expecting her to improve too soon. FINALLY, they admitted her after my third call and said her breathing had already slowed and it’s CIDP.
She was given two more IVIG treatments and is now on weekend prednisone doses and neurontin for the pain, she has been in intense physical and occupational therapy. She has amazed us. She went from not being able to sit up when we first got to the hospital, to now she can walk with a walker and she wears braces on her legs/ankles. The head neuro rehav physician said he expects her to be able to walk on her own by the end of summer at the rate she is progressing. I am not sure if that is realistic, but one can only hope. She has been tolerating her prednisone very well and has had no side effects on the neurontin. The dr said she will be on the weekend doses of prednisone for at least a year and then they will take her off and see how she does. I am very hopeful. I hope the worst of this is behind us now that we know exactly what is going on with her and will be able to catch it much sooner if/when she has her relapses.