Christine, Thank you for reaching out...I am very sad to read about what your family is going through and I hope that you get the help and resources you need very very soon.

My teen daughter was just diagnosed with MG this spring and someone mentioned a website to me: http://www.myasthenickids.org/

They are based in the UK but since they all have younger children, I am wondering if they may be of some help for you too?

I was told by my neuro that I would get plasmapheresis 5 days for the starting dose and then 1-2 days every week for maintenance until we could do it less often. (I am currently having ivig). It has been since day 5 of 26 since Emma had her dose, right? She definitely could be having more from what I understand.

debra