Glycogen Storage Disease – StarchWars | Archive

Busy October Post #1

Posted on 20. Jan, 2010 by Jillian.

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Trauma/Drama/Excitement: We went on our first family vacation with all four of our boys.
Prep work: I made sure to pack for every conceivable medical emergency. Along with our “normal” medical supplies we accessorized with a feeding pump and bags, extra gastrostomy tubes (not just the extensions), dextrose, etc. Plus, I mapquested our route to/from the [...]

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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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Teaching Dallin the Ways of the Starch

Posted on 09. Oct, 2007 by Jillian.

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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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Luke Vs. Mr. Roboto- a dog update

Posted on 05. Oct, 2007 by Jillian.

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Our son Ethan just had his fourth birthday, and received a thoughtful and creative gift from his “girlfriend” Karlee. She understands that we are training a dog that will (hopefully) be able to help the boys when they get sick. So, she built him an awesome robot out of tin cans- in case Luke doesn’t [...]

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A New Hope

Posted on 02. Sep, 2007 by BMW.

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We’ve had Luke in the house for one week now and the experience has had its ups and downs. For one thing since Luke is being raised as a service dog there is much more monitoring and discipline than there otherwise would be. With the current load of 4 small boys with Glycogen Storage Disease [...]

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Discontinuing Continuos Feeds

Posted on 29. Aug, 2007 by Jillian.

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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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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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The Locust Catchers

Posted on 18. Aug, 2007 by Jillian.

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Whenever we seem plagued, there always seems to be a team of people ready to squash our personal locusts.
Our third GSD little guy has had diarrhea for a week. Our youngest little GSD one has had a stuffy nose. On Monday, when transitioning our youngest off of his feeding pump and on to eating from [...]

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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 [...]