Archive for 'Glycogen Storage Disease'

Discontinuing Continuos Feeds

Posted on 29. Aug, 2007 by .

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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 [...]

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We Finally Have a Puppy!

Posted on 25. Aug, 2007 by .

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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 School Presentation

Posted on 25. Aug, 2007 by .

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We just gave a presentation: Understanding GSD to the school about GSD. It was wonderful. The principal, both of our son’s teachers, aides, the school nurse, a councilor, you name them, and they were there. It took a little longer to present than I thought it would, but we made a PowerPoint, and it went [...]

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The Locust Catchers

Posted on 18. Aug, 2007 by .

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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 [...]

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Glycogen Storage Disease- What to Expect the First Year

Posted on 31. Jul, 2007 by .

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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 [...]

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Being Prepared

Posted on 29. Jul, 2007 by .

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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 [...]

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Malteagles, Malteagles, Malteagles

Posted on 19. Jul, 2007 by .

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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 [...]

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Glycogen Storage Disease Get-Together in the West

Posted on 12. Jul, 2007 by .

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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 .

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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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