Myasthenia Gravis Support Group

I don't know a lot about the infant kind of MG. My 15 yr old daughter was diagnosed with adult onset generalized MG at 13. It seems a little severe to put a 3 yr old on prednisone. We had an endocrinology evaluation done when we were considering this for our daughter and they recommended against it because of the toxicity of the drugs given to protect against bone loss. Have you looked into thymus gland removal? My daughter declined quickly despite being on high doses of mestinon until her thymus was removed. Thanks. Sarah

i dont know much about the meds cause im just a newbie myself to this condition, but the thought of being normal and having fun helps the stress tone down some. Find something that ya'll can do together to keep your mind off of it.

Thanks for your reply. We did consider all the risk and benefits of the prednisone and decided to give it a try. So far only Sofia's eye lid muscles have been affected so we want to try the medications before deciding on a more agressive treatment like the surgery. It does help me to see her active because it reassures me that her major muscles are fine for now.

I can totally understand that approach, especially given she's still almost a baby. (Boy, that reminds me that 3 to 5 were the hardest with my daughter. She was so stubborn!) Just FYI, for the future, my daughter's surgery was performed by the chief of pediatric surgery at UCSF, Diana Farmer, who happens to be a chest surgeon. She was awesome and was able to take out the gland using scopes thru the left side. It was a short surgery and left virtually no scars- which was a consideration for us given we had a young girl. Good luck. Sarah