I have my daughter on neorontin right now but she is going to be taking klonopin and I was wondering if anyone esle had any info on these medications. I feel...
74
lisasandoval@...
Aug 5, 2004 7:50 pm
Kristy, What does your child take these medications for? What particular symtom? Lisa Mother to Michael GA-1 ... From: bellasislands [mailto:...
Lisa, Chloe takes these medications for her choreoathototic movement. She also has a little bit of dystonia. I just worry about what kinds of long term...
76
lisasandoval@...
Aug 6, 2004 5:28 pm
Kristy, Michael also has dystonia and cerebral palsy. Hi doctors have upped his dosage of baclofen and that has helped drastically. He no longer has...
Lisa, So the baclofen helps to control his dystonia . Does he have epilepsy? I am glad that they will be testing all newborns for the sake of new parents....
78
lisasandoval@...
Aug 6, 2004 11:53 pm
Hi Kristy, No, Michael does not have epilepsy, that is what they thought he had at first until it was discovered it was dystonia. The Baclofen has controlled...
These stories sound all too familiar....my nephew was born with GA1...my brother and his wife were told he would never walk, and would never talk. Although he...
Hi Seargent, www.glutaricacidemia.org and the boards have given me a lot of comfort and hope since my son was diagnosed 2 years ago. Another site that is...
Seargent Dimples, You should know that GA1 is specific to each child and a doctor or anyone else can't tell you what the future will be like, except that they...
Hi -- the Organic Acidemia Association website is http://www.oaanews.org -- we do have quite a few GA1's on our mailing list and if you'd like to join, there ...
... Acidemia Association)? We publish a newsletter three times a year - I would love for your write your story for our newsletter sometime....our next issue...
Seargent, My daughter is 2 1/2 years old and was diagnosed at birth with GA1. She has been on a regimen of medications based on Dr Morton's work with the Amish...
Hi! As i know about GA1 from my nephew story(and he is 6 and half years) Its not currect that the most damages in the first years at all. Because when he was a...
I am Perig. I wish to help those who have witnessed worsenings following the introduction of the precursor-restricted formulae (Lys- and Trp- free formulae). ...
Write to Kay Stagni at OAA or Mike Metil at IOGA. I have been very persistant at getting Michaels story out there. I have set up 2 interviews at our local...
91
lisasandoval@...
Sep 14, 2004 12:12 am
Hi Kathy, Just wanted to let everyone know that 2 of our local papers are doing follow-up stories on Michael, and to publicize the fight I am having with the...
Hi my grandson is on analog lysine and trysine I believe but here it is in a green can. could you tell me if this is the formula you are talking about.. thanks...
93
lisasandoval@...
Sep 28, 2004 10:00 pm
My sons formula consists of the follwing: Glutarex-1 (Lysine & tryptophan free) Pro-Phree, vanilla Pediasure (enteral formula) and nestle flavor packets (makes...
WHERE DO YOU GET THE FLAVOR PACKETS? <lisasandoval@...> wrote: My sons formula consists of the follwing: Glutarex-1 (Lysine & tryptophan free) Pro-Phree,...
95
lisasandoval@...
Sep 29, 2004 4:28 pm
I get them through the pharmacy that supplies Michael's formula. You can also contact Nestle direct. Lisa Sandoval Mother to Michael-GA1 ... From: Vicki...
96
lisasandoval@...
Sep 30, 2004 8:22 pm
To all, Here is the information for the Nestle Flavor Packets. www.NestleClinicalNutrition.com, or call Nestlé InfoLink(tm) Product and Information Service...
I want to thank you for your information on the nestle flavor packets. My grandson Brian was diagnosed in 1998 with glutaracidemia type 2. He is now 9 years...
I just wanted to let everyone know of a website that you can order all purpose flour and bread mix to make a variety of foods for your children that they...
Hi Everyone! I hope that all your kids are doing well. I wanted to post real quick and let you know of a website I put up for my daughter's foundation, in...
Hi Sarah -- do you mind if I pass your website to the OAA listserv? I would also like to include in the OAA newsletter. You did a great job with the website...
