I regret not pushing harder…

My neurologist convinced me that in my daughter’s case, ivig would be a bad idea, since she was improving and would get better no matter what treatment was done, and why risk all the terrible side effects, did I want to make it worse? So he basically scared me away from the idea (and by the time I found out about it, it was prob too late anyway). But now I feel he was wrong, and we should have done ivig.

Well, the improvement was and is very slow. It is getting better, but now I have read more and find that ivig should have been done. However, I trusted what the doc said. Now she is still not yet walking, but IS gaining strength and we are hoping walking will follow soon.

Her onset was early Feb 07. I never dreamed she would be this disabled still, in June. When they released her, they predicted full recovery within 2-3 weeks, based on emg/ncv results. They thought it was resolving based on test, but the clinical picture was not matching up with that.

Good luck and let us know what happens.