jgk
New Member
Posts: 11 
|
Post by jgk on Oct 7, 2017 18:42:57 GMT -5
I just saw this and have read about all kinds of things as we were waiting to be diagnosed. I ran across Glycogen Storage Disease, it sounds similar to what your son may be experiencing.
|
|
|
|
Post by adamsmom on Oct 15, 2017 10:59:29 GMT -5
My son is 2 and was diagnosed at 8 months. I dont understand why it is so difficult to find a doctor that would refer you to a specialist. We didn't have that problem and I feel grateful now that I am reading some of these stories. For some of you searching for answers....would it be helpful to invest in a blood sugar monitor to see if there is a drop in blood sugar after ingesting any type of fructose/sucrose? Not that I would recommend ingesting it for just this reason but if you or your child are still eating some anyway. That might be helpful in alerting doctors to a more serious problem. I am new to this board and don't know if this has been discussed before. Also, for anyone looking for a good child menu....Adam eats: plain Greek yogurt, Applegate chicken nuggets,egg noodles with butter, spaghetti with butter and parmesan cheese, Annie's mac and cheese, milk, water, cheese, and the new addition Jiffy baking mix which has recipes for pancakes, dumplings and biscuits on the box. I just make sure to limit the amount of wheat he gets from the baking mix/pastas. Wheat flour does have a small amount of fructose in it. Adam did well on his blood work with this diet. He also takes Nano VM for his vitamin.
|
|
|
|
Post by adamsmom on Oct 16, 2017 18:24:59 GMT -5
|
|
|
|
Post by tummyache on Oct 17, 2017 7:31:20 GMT -5
How many of the SNP's does Dr. Tolan's lab test for now? I have read that over 50+ ALDOB SNP's can cause HFI.
|
|
|
|
Post by adamsmom on Oct 17, 2017 12:28:47 GMT -5
I am not sure of test specifics but from my experience he responds quickly to inquiries.
|
|
|
|
Post by ukbill on Oct 18, 2017 0:21:33 GMT -5
His research and those of people working with him are the sources for much of my understanding about our condition.. and are the source of the useful information about loosing weight and the side effect of creating Fructose when body fat is converted into energy.
|
|
