My 3 year old daughter was diagnosed with MG last August when she was 2 years old- she started on Mestinon but after 2 weeks it stopped working. Her symptoms were mostly ocular, with some chewing and swallosing issues at times. We are now doing IVIG monthly (but starting to spread it out through the next 4 months) as well as Prednisone 7.5 mg PO daily. Here is a picture of her just one week before diagnosis at 2 1/1 years old (initially we thought she had just an eye issue). She had a positive AcH blood test shortly after this photo was taken (the peds eye doctor in our area was the one to order that test). We live in South Dakota (rural) so we really have little access to medical specialists (we go to Denver 7 hrs away since she has started IVIG as we have no peds neurologists anywhere close). I have not been able to contact many parents of toddlers with MG. My husband and I are attending the MG conference in a few weeks in Philly! If any of you area also going, we are hoping to learn more from you and your journeys!
Posted on: Sun, 06 Apr 2014 00:05:07 +0000
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