Comments on: Shaken, not stirred. http://www.starchwars.com/2007/03/shaken-not-stirred/ Glycogen Storage Disease Wed, 20 Jul 2011 15:08:47 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Bonita http://www.starchwars.com/2007/03/shaken-not-stirred/comment-page-1/#comment-7848 Bonita Sun, 17 Apr 2011 18:19:35 +0000 http://starchwars.com/control/lib/blog/2007/03/29/shaken-not-stirred/#comment-7848 Did Dr winsteen help you figure out the amout.?My grandson hasn't seen he yet! Did Dr winsteen help you figure out the amout.?My grandson hasn’t seen he yet!

]]> By: Misty http://www.starchwars.com/2007/03/shaken-not-stirred/comment-page-1/#comment-7165 Misty Tue, 06 Jul 2010 04:06:49 +0000 http://starchwars.com/control/lib/blog/2007/03/29/shaken-not-stirred/#comment-7165 My son has GSD type 1a and he was on a kangaroo feeding pump at night until he was about 5years old. The pump delivered a formula to his stomach called Tolerex. Then we were able to get him off the pump, by giving him larger and larger cornstarch doses at bedtime until we figured out his tollerance level. He gets 56 grams at 8:30 p.m. and his blood sugar is fine until 4am. Which is 7.5 hours. I read in your post "shaken, not stirred", that you give starch all throughout the nite. Have you tried increasing the dosage like we did so you only have to get up once for an additional feeding until breakfast time? I cant imagine getting up as many times as you do. I only did that his first week home from the hospital at 6 weeks old. And after a week of sleep deprivation, I had to get him on a feeding pump which meant at the time an NG tube down his nose and into his stomach thatI had to place myself. Then later he got his g-tube. But my point was that the kangaroo feeding pump allowed both of us to sleep and be rested, and enjoy our time awake more. My son get 30 grams of cornstarch after every meal during the day, about every 4 hours, and then the big dose at night, and another 40 grams at 4a.m., then up for breakfast and school at 7am. But it was definatley work to find out what his magic number of grams was for the big bedtime dose, but it was worth it. Then he didn't have to be attatched to the kangaroo pump anymore, and I also didn't have to wake up every few hours to keep his glucose levels up. Hope this helps Misty My son has GSD type 1a and he was on a kangaroo feeding pump at night until he was about 5years old. The pump delivered a formula to his stomach called Tolerex. Then we were able to get him off the pump, by giving him larger and larger cornstarch doses at bedtime until we figured out his tollerance level. He gets 56 grams at 8:30 p.m. and his blood sugar is fine until 4am. Which is 7.5 hours. I read in your post “shaken, not stirred”, that you give starch all throughout the nite. Have you tried increasing the dosage like we did so you only have to get up once for an additional feeding until breakfast time?
I cant imagine getting up as many times as you do. I only did that his first week home from the hospital at 6 weeks old. And after a week of sleep deprivation, I had to get him on a feeding pump which meant at the time an NG tube down his nose and into his stomach thatI had to place myself. Then later he got his g-tube. But my point was that the kangaroo feeding pump allowed both of us to sleep and be rested, and enjoy our time awake more.
My son get 30 grams of cornstarch after every meal during the day, about every 4 hours, and then the big dose at night, and another 40 grams at 4a.m., then up for breakfast and school at 7am. But it was definatley work to find out what his magic number of grams was for the big bedtime dose, but it was worth it. Then he didn’t have to be attatched to the kangaroo pump anymore, and I also didn’t have to wake up every few hours to keep his glucose levels up.
Hope this helps
Misty

]]> By: Lorrie http://www.starchwars.com/2007/03/shaken-not-stirred/comment-page-1/#comment-6 Lorrie Sat, 31 Mar 2007 03:49:11 +0000 http://starchwars.com/control/lib/blog/2007/03/29/shaken-not-stirred/#comment-6 I thought you said poem not post. I was slightly disappointed, but I read anyway and was educated and even interested. You are amazing!!!! I am in constant awe of your knowledge, willingness to learn and you stamina. I thought you said poem not post. I was slightly disappointed, but I read anyway and was educated and even interested. You are amazing!!!! I am in constant awe of your knowledge, willingness to learn and you stamina.

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