My sweet 13 month old girl just began mestinon (in an oral syrup form) today. She's had two doses of .83ml each in 8 hours, but nothing seems to be happening. The Dr. said it should take effect in 30-40 minutes. Could her dose be too low? Or was her positive diagnosis based on the Neostigmine challenge test false? She's seroneg, but results aren't in yet on the MuSK antibody test. Was so excited to have a solution to her problem, but now feeling let down. Any tips?

First, I am so sorry you are going through this with your little baby. Big hugs to both of you.

Second, the dosage might be too low or it may not be effective for her. I am MuSK positive and unfortunately it doesn't work for me. However, I would suggest you speak with the prescribing doctor about making dosage adjustments.

I really hope you can find something to help soon! MG can be a frustrating and mysterious illness.

My heart goes out to you. My prayers are with you and your child.

I do not think anyone on our board has experience with infant with MG or their dosage. I know when I started on mestinon (at 52), they used a low dose and gradually increased it until I reached an effective dosage. Mestinon improved me by about 25%. I am not sure how observeable the improvement is to others.

It must be very difficult. Your child is too young to give you any feedback. Did you notice that she was more active? I do not think you can expect all the symptoms to go away. Contact your doctor and let him know what you experienced.

My eyes were the first affected and the least improved by mestinon. The most observable improvement I can visual see is that my smile curls up instead of down. But I feel much more improvement than I can see.

I am double seronegative and can definitely feel improvement with mestinon. Let us know what the doctor says.

Stay strong,
kathie