Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-06-2014, 09:45 AM #1
flhardy flhardy is offline
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Join Date: Sep 2014
Posts: 1
8 yr Member
flhardy flhardy is offline
Newly Joined
 
Join Date: Sep 2014
Posts: 1
8 yr Member
Default 3 year old diagnosed with MG

Hi all, I am glad to find this forum. My daughter was diagnosed with MG in April per EMG. I have been unable to find valuable information on young children with MG. Currently her only symptom is ptosis and no muscular weakness. She is two weeks post op thymectomy without thymoma. She is on Mestinon and takes Prednisone for three days following IVIG due to headache. She has been on the IVIG since June. We have not seen much improvement with the IVIG. We met with her neuromuscular specialist on yesterday. He recommended stopping the IVIG for now and considering 5 day hospitalization to begin prednisone. We were provided lots of information on prednisone and the side effects really scare me, especially for a 3 year old. I am beginning to feel like she is a guinea pig and that we are doing too many things to her little body. I have been able to find really good info about IVIG on the board and some prednisone information. I just wanted to see if anyone can provide me with some type of reassurance to go ahead with prednisone or should we just stick it out with the IVIG. This has been a tough uphill emotional battle for me and glad to be speaking with other MGers. Any words of support or advice is greatly appreciated.
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