Comments for Glycogen Storage Disease - StarchWars

Comment on Day 4: Last Day at Shands- 2nd report card by Momof3

Momof3 — Wed, 20 Jul 2011 15:08:47 +0000

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

Comment on You know you have GSD if…. The E.R. nurse knows you by name- or at least by disease by Momof3

Momof3 — Wed, 20 Jul 2011 14:51:48 +0000

You are so right about the ER. My daughter, who is 19 now, has a rare case of GSD and Type 1 diabetes. We were told by Dr. Weinstein that she is the first to have both at the same time. She lives on a tight rope everyday of her life. We call the ER and hospital her second home because we are there so much. She has a glucose, ketone and lactic acid checker and she has to check all 3 atleast 3 times a day to make sure all levels are in the normal. If one level is the least bit tipped, she gets in trouble. I know the stress and worry you guys have for your son and what he goes through on daily basis. Bless all of you. We live in a small town and the doctors here didn’t even know anything about GSD until my daughter. Thank goodness Dr. W is able and willing to work with the doctors here so she gets the right and best treatment when needed. Dr. W is an angel.

Comment on Day 4: Last Day at Shands- 2nd report card by Shiran Ben shabat

Shiran Ben shabat — Sat, 04 Jun 2011 12:43:36 +0000

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

Comment on 2011 The Week Before Florida Trip by Shiran Ben shabat

Shiran Ben shabat — Sat, 04 Jun 2011 12:29:28 +0000

Woow !!!cheers for you bravo! I’m expecting to fly on Thursday to Toronto be there three days with my sis then a connection to Atlanta then to Gansvill to finely meet Dr W for the first time! I’m so existed and afraid but after reading what you have been throw with all four boys I’m getting calmer .
I’m flying with my husband and my one and a half baby boy who has Gsd3 . and I’m pregnant in week 22
I didn’t mention we are ending our trip to USA in New York ( 5 days) and we expect a very long flight to israel approximate 12 hours…
So I completely understand what you have Been throw with all the stress befor the trip! Go on and be a strong woman as you are now ! I Learn from you alot only by reading and hope some day we will meet eachother

Comment on Luke Vs. Mr. Roboto- a dog update by Alyson

Alyson — Thu, 19 May 2011 00:57:48 +0000

So we are thinking about applying for a dog. any words of advice?? Is it worth it?? Does it work?/
I would love to hear what you have to say

Comment on Second Hospital Day- Improvements by Alyson

Alyson — Thu, 19 May 2011 00:47:42 +0000

We also LOVED Kathy. She was very positive and direct. In addition she had great suggestions, meals and ideas.

It was great to see you all on the floor for a few hours. Glad you had a great visit

Comment on Second Hospital Day- Improvements by Bethany

Bethany — Tue, 26 Apr 2011 17:35:49 +0000

Im so excited to hear about your experience with the dietician! Food is a huge stress for me right now mostly because I have no skills and our current dietician is…. difficult. I dread seeing her. I really can’t wait to get to Florida!! It will be nice to hear positive reinforcement and not hear “you may just have to choose between an overweight child or a healthy liver.”

Comment on Shaken, not stirred. by Bonita

Bonita — Sun, 17 Apr 2011 18:19:35 +0000

Did Dr winsteen help you figure out the amout.?My grandson hasn’t seen he yet!

Comment on Quality of Life with GSD 1A by Bonita

Bonita — Sun, 17 Apr 2011 17:15:41 +0000

My grandson Anthony has GSD1A.He started T-ball last week.I worry about his sugar droping while playing.He sometime hides how he feeling. It seem like his cheeks and arms get red when it’s time for his CS.

Comment on The second half of 2010 by sherry-lynn Hattie

sherry-lynn Hattie — Fri, 25 Mar 2011 19:52:45 +0000

Hello,
I’m so glad i found this site… my daughter is 7 and has GSD 1a…. we live in Canada and get very little help with our condition and many times feel like we are on our owne… I would love to connect to with more families that have GSD and be able to chat and see what works for others…
i hope i can connect with somone from this group….

Thanks
sherry-lynn