Comments on: Day 4: Last Day at Shands- 2nd report card http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/ Glycogen Storage Disease Wed, 20 Jul 2011 15:08:47 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Momof3 http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-8422 Momof3 Wed, 20 Jul 2011 15:08:47 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-8422 My 19 year old daughter who has muscle glycogen synthase def. and Type 1 Diabetes sees Dr. Weinstein. She was diagnosed with Diabetes about 8 years ago and we could never get her numbers under controlled. About 2 years ago another doctor in Nashville, TN diagnosed her with Type O GSD of the liver and started her on high carb diet and upped insulin for the extra carbs. This diet was putting her in ICU about every 2 weeks with ketoacidosis and lactic acidosis. I started researching GSD in search of a specialists because, as a mother, I knew she wouldn't live long if we didn't find one that would or could help her. I found Dr. W and emailed him all about Kate and he called me back that night and talked to me, my husband and Kate. He wanted her in Florida for research as soon as possible. A month later we arrived for our 3 day stay of tests and on the second day, she was already feeling better and her labs were a lot better. Cornstarch? yeah, Cornstarch and Unjury Protein Shake 3 times a day...... WOW! This man is amazing and so very smart. She still has times where her levels get out of wack ,but this is because of the rarity with having both Diabetes and GSD. Atlease we know how to treat it better now and when she gets in trouble, DR. W is only a phone call away! Bless all GSD patients and their families, Tammy My 19 year old daughter who has muscle glycogen synthase def. and Type 1 Diabetes sees Dr. Weinstein. She was diagnosed with Diabetes about 8 years ago and we could never get her numbers under controlled. About 2 years ago another doctor in Nashville, TN diagnosed her with Type O GSD of the liver and started her on high carb diet and upped insulin for the extra carbs. This diet was putting her in ICU about every 2 weeks with ketoacidosis and lactic acidosis. I started researching GSD in search of a specialists because, as a mother, I knew she wouldn’t live long if we didn’t find one that would or could help her. I found Dr. W and emailed him all about Kate and he called me back that night and talked to me, my husband and Kate. He wanted her in Florida for research as soon as possible. A month later we arrived for our 3 day stay of tests and on the second day, she was already feeling better and her labs were a lot better. Cornstarch? yeah, Cornstarch and Unjury Protein Shake 3 times a day…… WOW! This man is amazing and so very smart. She still has times where her levels get out of wack ,but this is because of the rarity with having both Diabetes and GSD. Atlease we know how to treat it better now and when she gets in trouble, DR. W is only a phone call away! Bless all GSD patients and their families, Tammy

]]> By: Shiran Ben shabat http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-8134 Shiran Ben shabat Sat, 04 Jun 2011 12:43:36 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-8134 Amazing news ! I'm raising up one child with Gsd and I just can't imagen what you are going throw with four! You and your family are heroes ! Keep it up Amazing news ! I’m raising up one child with Gsd and I just can’t imagen what you are going throw with four! You and your family are heroes ! Keep it up

]]> By: Jayne http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-7218 Jayne Mon, 20 Sep 2010 01:57:57 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-7218 Hi Jillian, I am curious "sugar-fee" ! I have GSD type IIIa and I am 48 years old (I read on another page you were interested in us oldies with GSD) Does this amazing Dr. Weinstein recommend a low sugar/sugar free diet for your boys? When i was born little was known and I was wrongly diagnosed as having GSD type 1. It wasn't till I emigrated to New Zealand and got pregnant that I found out I had type IIIa. As a child my family used to spoon feed me sugar when I had low blood sugar and the doctor told them to take each day as it comes. I'm not doing too badly but have some difficulty with my right leg as there is some muscle disease going on there and so walking up hills and stairs is very difficult. My lab tests show elevated liver enzymes and I wonder if perhaps if I followed a diet like your boys I could improve upon them. Like you I am not going to let this thing get me! Kind regards and all the best, Jayne Hi Jillian,

I am curious “sugar-fee” !

I have GSD type IIIa and I am 48 years old (I read on another page you were interested in us oldies with GSD) Does this amazing Dr. Weinstein recommend a low sugar/sugar free diet for your boys? When i was born little was known and I was wrongly diagnosed as having GSD type 1. It wasn’t till I emigrated to New Zealand and got pregnant that I found out I had type IIIa. As a child my family used to spoon feed me sugar when I had low blood sugar and the doctor told them to take each day as it comes.

I’m not doing too badly but have some difficulty with my right leg as there is some muscle disease going on there and so walking up hills and stairs is very difficult. My lab tests show elevated liver enzymes and I wonder if perhaps if I followed a diet like your boys I could improve upon them.

Like you I am not going to let this thing get me!

Kind regards and all the best, Jayne

]]> By: Kelly Reading http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-5297 Kelly Reading Wed, 30 Sep 2009 02:22:20 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-5297 Really amazing! Fantastic news for you and your boys! I was treated by an outstanding GSD doctor as a child (Dr. Sidbury), but I can't help to think how my labs may have looked if I had been so fortunate to see Dr. Weinstein when I was a little girl (Type III) with terrible labs and a huge liver. Really amazing! Fantastic news for you and your boys! I was treated by an outstanding GSD doctor as a child (Dr. Sidbury), but I can’t help to think how my labs may have looked if I had been so fortunate to see Dr. Weinstein when I was a little girl (Type III) with terrible labs and a huge liver.

]]> By: Lynn Nezin http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-5012 Lynn Nezin Fri, 11 Sep 2009 22:31:52 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-5012 I am planning on a trip to Sweden when Dr. Weinstein receives his Nobel Prize Lynn N I am planning on a trip to Sweden when Dr. Weinstein receives his Nobel Prize Lynn N

]]> By: Brian http://www.starchwars.com/2009/06/day-4-last-day-at-shands-2nd-report-card/comment-page-1/#comment-4303 Brian Mon, 27 Jul 2009 05:08:40 +0000 http://starchwars.com/2009/06/18/day-4-last-day-at-shands-2nd-report-card/#comment-4303 That is so awesome! I think you give hope to all of us GSD parents that this disease can be controlled. I am so happy for you and your family -Brian P. That is so awesome!

I think you give hope to all of us GSD parents that this disease can be controlled.

I am so happy for you and your family

-Brian P.

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