Glycogen Storage Disease – StarchWars | Archive

Training the Sniffer

Posted on 05. Jul, 2008 by BMW.

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I feel bad that I haven’t posted a blog in such a long time. Our family has recently moved and with everything else going on somehow blogging got moved down a little further on the priority list. However, today I was really impressed with how our Glycogen Storage Disease helper pup in training, Luke, worked [...]

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Dogs and Hypoglycemia

Posted on 12. Mar, 2008 by BMW.

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More and more it seems evident that dogs can be trained and used to help detect hypoglycemia. This article was sent to us by our friends with Genesis Service Dogs who are helping us train Luke. The article is from Diabetes Forecast
http://www.diabetes.org/uedocuments/df-dog-feature-0308.pdf

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We Finally Have a Puppy!

Posted on 25. Aug, 2007 by Jillian.

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We took the plunge; and yesterday we brought home an adorable black Labradoodle (part Labrador, part poodle). Our oldest son, whose dog it is, has named him Luke- as in Luke Skywalker. I was pushing him for a brown one we could name Chewbacca (Chewy for short), but alas, he could not be prevailed upon. [...]

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Malteagles, Malteagles, Malteagles

Posted on 19. Jul, 2007 by Jillian.

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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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Glycogen Storage Disease Get-Together in the West

Posted on 12. Jul, 2007 by Jillian.

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At our last visit to Florida and Dr. Weinstein, he mentioned we should try to find a way for our boys to meet others affected by Glycogen Storage Disease. Since most GSD kids in the U.S. seem to be in the east, it’s no wonder that so are most of the conferences. As far as [...]

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The School is “Fixed”

Posted on 18. Jun, 2007 by Jillian.

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Anyone who has read previous posts on Starchwars may remember the difficulty we have been having trying to get our oldest son appropriate services at his public school. For him, this would include an aide assigned specifically to him and trained to recognize and treat hypoglycemia as well as administer his cornstarch “medicine”. The school [...]

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Emergency Preparation

Posted on 20. Apr, 2007 by Jillian.

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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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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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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 [...]