Glycogen Storage Disease – StarchWars

Update

Posted on 13. Mar, 2007 by Jillian in Emergencies, Hospitals, Sickness

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 entire time because we were scared to contaminate me since I need to take care of the 5 year old, 3 year old, and 2 month old at home. Unfortunately it didn’t work. Our 5 year old started acting lathargic and when we tested his blood sugar he was down to 44. Fun. After calling our favorite doctor, Dr. Weinstein, we have put him on a continuous feed since the cornstarch will be difficult for his body to absorb while he’s sick. His sugars are now up to 117. Thankfully he’s stable and hopefully things will get better soon. Apparently this virus can last up to 14 days, and people often re-contaminate themselves.

Also, the public pre-school that attends has been difficult lately. They simply do not understand the gravity of this disease, and the school nurse and psycologist were actually pushing to have our barely 5 year old weaned off his g-tube by the end of the year, and “Why don’t you have him in therapy so he can learn how to eat?” He can eat. We only use the tube for continuous feeds when necessary and cornstarch every four hours. I’ve been repeating this for 6 months, you’d think they would get it by now. Sorry if I sound bitter, but it’s hard enough dealing with just glycogen storage disease, trying to coordinate all of his special services when teachers and principals automatically assume I have no idea what I’m talking about can be even more exhausting- especailly considering I trust them with my son’s life everytime I put him on the bus.