McArdle's Disease

Jamie - posted on 02/25/2010 ( 1 mom has responded )

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Ok, I don't have a child with this per say...but my Husband has this and I feel like his parent sometimes (I know some wives out there can relate! ;-} ) because he refuses to go to the doctor and do anything about it other than pain management during a flare. I am still learning about the disease. What do you do to mangage this disease? Are we doing all we can by just dealing with pain during flares? Is there a special diet that helps/hinders this disease? Is there a daily med to take? I have no idea!

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Krystal - posted on 09/19/2010

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My daughter has gsd type 1a I think if your inlaws cant have gsd cause it would of killed them a long time ago if they werent treated. People who have gsd have to eat every 2 to 3 hours. Majority of our children have a gtube or a peg tube to do over night feedings. If you have gsd it is cause the liver isnt passing sugar and not working properly there are lots of blood work to make sure our childs leves are up there are many websites for gsd but it is mainly controled by cornstarch if u have questions e-mail me tx_cowgirl_830@yahoo.com

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