Hello Sonja  I am always saddened to know that a little person has been diagnosed. The good news is that children do far better than adults with this condition, or any other condition for that matter. If we could pattern ourselves after these little people, we'd do much better too! Unfortunately, people do travel great distances to see a neurologist. Does your little fellow see a pediatric neurologist? As well, was he diagnosed with congenital MG or did they just say, myasthenia gravis? One of those most difficult tasks for parents is to try very hard not to set heavy limitations for the child. For loving, concerned parents, this can be difficult, and finding that balance can take some time. Your son will let you know in his way. Ask your neurologist to keep an ear out for other parents of children with MG and tell him/her that you would like to speak with them. Doctors information share at meetings so this is a possibility. If you are willing to post what state/province you live in, perhaps someone on the forum can make some suggestions, or knows where you can find more information in your area. Post edited by: MGCanada, at: 04/05/2012 06:21 AM My dearest father always said, "We can't worry about things we can't control." |
