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04/04/2012 11:57 AM

Children with MG.

sonjamom
 
Posts: 8
New Member

I wanted to see if anyone can help me. My 4 year old son was diagnosed with MG. I read that it is very rare in children. Is there anyone here that has had it as a child or has a child with it. I would like for him to meet children that have the same problems he does.. but does not look like that may happen. Another question. Our Nuero Dr is 3 hours away.. does everyone have to drive a long distance to see their Dr? Thank you.Blink
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04/05/2012 06:20 AM
mem9478

Hello Sonja Smile 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


04/06/2012 06:04 AM
sonjamom
 
Posts: 8
New Member

Thank you MGCanada. My son's Dr did not tell me what type, just that he has MG. It is all still very new to me as we were diagnosed 4 days ago. I let me so do what he can. He plays on a soccer team, does not have as much energy as the other kids, but I do not tell people anything. I do not want him looked at as different. I want him treated as a 4 year old.. not a child that everyone feels sorry for cause he has MG.

They are in the process of changing us from a Ped Neurologist to an adult Neurologist cause the adult Dr specialises in MG. We are located in North Carolina and we go to UNC for treatment. We live in Jacksonville NC. But I would travel any distance to get him the proper treatment. Thank you for all your input. As I said, I am still new to all of this and any suggestions or help is greatly helpfull. Thank you again

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