Glycogen Storage Disease – StarchWars | Glycogen Storage Disease

Weird Ice Cream that’s GSD 1A Friendly

Posted on 25. Mar, 2007 by BMW.

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I ran out of ingredients that I normally used for makign our boys “special ice cream”, so I decided to improvise and see what I could come up with. I ended up with an ice cream that had the best texture that I’ve been able to make so far. I was dissappointed with the flavor [...]

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Recipes

Posted on 21. Mar, 2007 by Jillian.

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One of the hardest parts of GSD is finding recipes to match the diet- especially for special occasions such as birthdays or holidays. So, we’ve started a “recipe” page. PLEASE feel free to e-mail me ANY sucrose, fructose, or lactose-free recipes you come up with. I would particularly like to post a frosting recipe. Wink [...]

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A Family Disease

Posted on 18. Mar, 2007 by Jillian.

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When a child has a rare, life-threatening disease like Glycogen Storage Disease, it doesn’t just affect the child or even his immediate family. It touches and alters the lives of extended family as well. For instance, last week when our GSD boy #3 was in the hospital, my husband needed to stay with him 24 [...]

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Am I a Carrier of GSD?

Posted on 18. Mar, 2007 by BMW.

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Since our family has been diagnosed and especially since we’ve batted a thousand on all four of our boys having GSD 1A many of our extended family members have expressed interest in finding out if they too are carriers of the genetic disorder.
The chances, of course, are rare that even if a person happens to [...]

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Update

Posted on 13. Mar, 2007 by Jillian.

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Well, our 14 month old is still in the hospital. He has the rotavirus, and we are having difficulty weaning him off the I.V. Everytime we try to gradually drop the I.V. rate, his blood sugar drops below 70 and they have to raise the I.V. rate again. My husband has stayed with him the [...]

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You know you have GSD if…. The E.R. nurse knows you by name- or at least by disease

Posted on 11. Mar, 2007 by Jillian.

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Yesterday our 14 month old got sick. His “normal” friends had a bad fever, and horrible aches and pains. That’s how it started out, but after a few hours we believe his lactate levels rose too high and he began throwing up. We switched gears to giving him a slow gravity feed of one ounce [...]

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“We finally have a GSD Puppy!”

Posted on 10. Mar, 2007 by BMW.

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Dr. Weinstein was excited to tell us about the new puppy that is confirmed to have Glycogen Storage Disease. The new born malteagle (cross between a maltease and a beagle) pup has been four years in the making (we feel for the mother) and is a welcomed addition to the GSD research team.
With 4 young [...]