Glycogen Storage Disease – StarchWars

Teaching Dallin the Ways of the Starch

Posted on 09. Oct, 2007 by Jillian.

It’s official, Dallin is 9 months old and has begun cornstarch! We spoke with Dr. Weinstein today, and he encouraged us to start giving Dallin 5 grams of cornstarch in 2.5 oz. of Prosobee- and see how his blood sugar handles it. We started out testing him every 15 minutes, then every half hour, and [...]

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How do You Wake Up?

Posted on 13. Sep, 2007 by Jillian.

I think most GSD parents who are responsible for all or most of the night time cornstarches have a constant subconscious fear of sleeping through the alarm. I’ve even known a certain Aunt Bonnie who, after accompanying us to Florida, woke up in a cold sweat terrified that she missed giving someone their 2am. This [...]

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Discontinuing Continuos Feeds

Posted on 29. Aug, 2007 by Jillian.

A necessary evil until the kids tolerate cornstarch, continuous feeds are a blessing and a curse.
When our older boys were first diagnosed with GSD our former GSD specialist put them on cornstarch every four hours during the day, and then on a continuous feed during the night so that we could “sleep through the night” [...]

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Glycogen Storage Disease- What to Expect the First Year

Posted on 31. Jul, 2007 by Jillian.

Babies with GSD 1a can be a bit of a challenge. The most obvious challenge is controlling blood sugar. Each bundle of joy is different, but in general they are between 9 and 18 months before they can tolerate the magical cornstarch “medicine”. So, what do you do in the meantime?
While we were in the [...]

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Malteagles, Malteagles, Malteagles

Posted on 19. Jul, 2007 by Jillian.

Malteagle pictures
Some are so cute, some are so ugly they’re cute, but either way, we love malteagles. These photos were taken of the puppies bred specifically for helping to find a cure for Glycogen Storage Disease. Dot (mom) was a carrier, given to Dr. Weinstein by Duke University. Last December she had darling little puppies- [...]

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Emergency Preparation

Posted on 20. Apr, 2007 by Jillian.

What if there was another tragedy like 9/11? Another natural disaster like Hurricaine Katrina? How would we be able to leave without any notice? It’s important for everyone to be prepared for an emergency. It’s especially important for someone with GSD, and it’s extremely important for four boys with GSD. There are many good resources [...]

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Shaken, not stirred.

Posted on 29. Mar, 2007 by Jillian.

I often have people ask “Cornstarch? Really? Why? How?”. So, I thought it might be nice to write a post in response.

Glycogen Storage Disease type 1a kids like mine cannot regulate their own blood sugar. So we give them cornstarch every 4 hours, 24 hours a day. Even in the middle of the night. My [...]

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