GSD Vs. Small School Districts

Posted on 05. Apr, 2007 by .

5

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 [...]

Continue Reading

Idaho Parents Unlimited

Posted on 04. Apr, 2007 by .

0

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 [...]

Continue Reading

Shaken, not stirred.

Posted on 29. Mar, 2007 by .

3

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. [...]

Continue Reading

Weird Ice Cream that’s GSD 1A Friendly

Posted on 25. Mar, 2007 by .

0

I ran out of ingredients that I normally used for makign our boys “special ice cream”, so I decided to improvise and see what I could come up with. I ended up with an ice cream that had the best texture that I’ve been able to make so far. I was dissappointed with the flavor [...]

Continue Reading

Recipes

Posted on 21. Mar, 2007 by .

1

One of the hardest parts of GSD is finding recipes to match the diet- especially for special occasions such as birthdays or holidays. So, we’ve started a “recipe” page. PLEASE feel free to e-mail me ANY sucrose, fructose, or lactose-free recipes you come up with. I would particularly like to post a frosting recipe. Wink [...]

Continue Reading

A Family Disease

Posted on 18. Mar, 2007 by .

1

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 [...]

Continue Reading

Am I a Carrier of GSD?

Posted on 18. Mar, 2007 by .

2

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 [...]

Continue Reading

Update

Posted on 13. Mar, 2007 by .

1

Well, our 14 month old is still in the hospital. He has the rotavirus, and we are having difficulty weaning him off the I.V. Everytime we try to gradually drop the I.V. rate, his blood sugar drops below 70 and they have to raise the I.V. rate again. My husband has stayed with him the [...]

Continue Reading

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 .

2

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 [...]

Continue Reading

« Newer Entries
Older Entries »