Archive for 'Education'

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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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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Bloodless Glucometer

Posted on 07. May, 2007 by .

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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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Medic- Alert Service Dogs

Posted on 30. Apr, 2007 by .

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Last year when my boys were staying at Shand’s Hospital/ University of Florida, our favorite physician mentioned they had some Malteagles (a maltese/ beagle) that needed a good home. We like dogs, but with (at the time) three small boys with a chronic medical disease, we felt it best to not even consider it. However, [...]

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Emergency Preparation

Posted on 20. Apr, 2007 by .

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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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GSD Vs. Small School Districts

Posted on 05. Apr, 2007 by .

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Our eldest son began preschool at the local elementary school (commonly referred to as head start) due to developmental delays. In the beginning of the year, I held a meeting with the school staff to discuss his Individualized Education Plan (IEP). I had NO IDEA what I was doing, and I write this post not [...]

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Idaho Parents Unlimited

Posted on 04. Apr, 2007 by .

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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 administrators in [...]

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A Family Disease

Posted on 18. Mar, 2007 by .

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When a child has a rare, life-threatening disease like Glycogen Storage Disease, it doesn’t just affect the child or even his immediate family. It touches and alters the lives of extended family as well. For instance, last week when our GSD boy #3 was in the hospital, my husband needed to stay with him 24 [...]

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