Glycogen Storage Disease – StarchWars

New GSD Networking Website

Posted on 08. Sep, 2007 by Jillian.

We’ve been wanting to start a networking website. We finally got something basic going at http://www.gsdlife.org This may turn out to be a great place to share experiences with all types of Glycogen Storage Disease in a more private environment. There’s a forum for discussions, a place for individual blogs (a [...]

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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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Being Prepared

Posted on 29. Jul, 2007 by BMW.

Just another small example on how the unexpected can happen and give you a sudden spook.
A few nights ago we were getting the kids bathed and ready for bed. The process started out normal enough with the typical herding of kids and trying to keep our 18 month out of anything he can think of [...]

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Sanctuary in Florida!

Posted on 03. Jun, 2007 by BMW.

Though the trip to Florida is challenging with four children under the age of 6, we come home recharged and more prepared to continue the non-stop battle of Glycogen Storage Disease. As my wife has mentioned in the previous post, we have learned and gained experience that helps us travel the country with our little [...]

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Florida Trip Tips and Tricks (try saying that 10 times fast)

Posted on 01. Jun, 2007 by Jillian.

We just got back from seeing Dr. Weinstein at Shand’s Hospital/ Univerisity of Florida in Gainesville. Last year just getting there was extremely difficult. Anything that could go wrong, did. This year was incredibly smoother, mostly due to the extra set of hands AKA Aunt Bonnie (we will NEVER be able to thank her enough) [...]

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Bloodless Glucometer

Posted on 07. May, 2007 by Jillian.

CNN just wrote an article on a new device that can test blood sugar without pricking the finger! Apparently the device penetrates the skin with near-infared rays eliminating the need for an actual drop of blood. Of the five clinical studies already performed, the new device has tested 85% accurate, whereas a glucometer has an [...]

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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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Idaho Parents Unlimited

Posted on 04. Apr, 2007 by Aunt Leslie.

I came across a remarkable organization today; Idaho Parents Unlimited. We missed their conference this year, but I will make it a point to go next year. Some of the seminars look like just what we need including one related to kids with special diets in school and how to best deal with [...]

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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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