my daughter Destiny almost 6 has gone back and forth from loose to constipated when she was loose the doctors had her on fiber at one point andimmodium at...
1519
escallemd
Sep 4, 2007 2:10 am
Hello All. My name is Dolores. I don't often post items, but always read the posts. I live in California and have a 2-year-old daughter named Elena. She was...
1520
lori_paulino
Sep 4, 2007 6:57 am
Parent of a new baby girl with GA1 born 8/16. She is still in the hospital with GI tract issues, so therefore they haven't started feedings. My immediate...
1521
cindy hill
cindync23
Sep 4, 2007 6:36 pm
Hello Dolores, If you have a question, ASK!!! lol. Nothing is stupid in here. Trust me! I have had may problems with diaper rash. The only kind of diaper rash...
1522
cindy hill
cindync23
Sep 4, 2007 6:42 pm
Hello Lori, Anything you are concerned about, ask the doctors, even if you feel like they are stupid questions. No question is a stupid one. I would contact a...
1523
Danielle Fleck
zoesmom323
Sep 5, 2007 3:45 pm
Hi Lori, My daughter Zoe was diagnosed with GA-1 four days after we brought her home. It was overwhelming and hard to wrap my mind around what was going on....
1524
escallemd
Sep 5, 2007 5:37 pm
Thank you, Cindy. I hadn't heard of that before, but I will certainly try it. Dolores ... Trust me! I have had may problems with diaper rash. The only kind of...
1525
cindy hill
cindync23
Sep 5, 2007 7:28 pm
Dolores, It's kind of pricey, but, it's the only cream I trust. I go on ahead and get the biggest tube. It lasts longer. If the rash is really bad, it might...
1526
Jennifer Young
jen_kev_cody
Sep 7, 2007 11:21 pm
I would just ask. At first, I believe we checked Cody's levels about every two weeks, and now we do them every month. His amino acid levels have always been...
1527
Danielle Fleck
zoesmom323
Sep 7, 2007 11:33 pm
Jennifer, I have a question for you. We just had our daughterąs amino levels checked and they were within normal limits too. What does that mean exactly?...
1528
Tracy Jamison
superbusymom3
Sep 8, 2007 1:22 pm
danielle have you thought about bringing your baby to the ga social next friday Dr. morton is usually there it is at his clinic if I remember right To:...
1529
Tracy Jamison
superbusymom3
Sep 8, 2007 2:47 pm
what is the adress for the social? That way I can type it into mapquest to get directions To: glutaric_acidemia@...: cswelch@...:...
1530
yakoodle
Sep 8, 2007 4:48 pm
Congratulations on your new baby girl. My daughter had blood test every month for the first 3 months then every 2-3 months there after, I am now getting them...
1531
Danielle Fleck
zoesmom323
Sep 8, 2007 4:53 pm
I would love to take her to the social but I don't think we can afford it. We live in California which makes Pennsylvania a long journey (I'm assuming that's...
1532
Tracy Jamison
superbusymom3
Sep 9, 2007 4:31 pm
we live in ohio so pa isn't as far for us but we are 5 people on a one person income we have decided to go every other year a couple of years ago we saw him...
1533
cocoturnipseed
Sep 10, 2007 4:02 am
My daughter is 13 months old and was pre-screened with ga1. She is doing great. She is happy, eating well and growing. One thing I am concerned about though...
1534
Posey, Lacy
lposey@...
Sep 10, 2007 1:28 pm
We have experienced the same slight jerky movements. Our Dr. seems to think it may be a slight movement disorder. She said that if you are just looking at...
1535
sangiovese
Sep 11, 2007 1:04 pm
Please all come to The clinic for Special children this Friday Sept 14 at 5pm for a wonderful evening. This social is for parents and families of affected...
1536
sangiovese
Sep 12, 2007 1:12 pm
... the addres is 535 Bunker Hill Road, Strasburg , PA 17579 it starts at 5pm and IOGA is providing the chicken, drinks and one dessert. all are asked to...
1537
Jennifer Young
jen_kev_cody
Sep 12, 2007 2:13 pm
So far, Cody has had a normal 2 years except for the diet. He can now tolerate 22g of protein from food/whole milk. He does not have any delays except maybe...
1538
cswelch1@...
sangiovese
Sep 13, 2007 3:49 pm
From: sangiovese <cswelch1@...> Date: 2007/09/12 Wed AM 08:12:14 CDT To: glutaric_acidemia@yahoogroups.com Subject: [glutaric_acidemia] Re: adress for...
1539
Melissa Skidmore
meljoe_skidmore
Sep 13, 2007 5:11 pm
Have a GREAT time this weekend - maybe next year we'll join you all! It sounds like a really wonderful event. Best, Melissa Skidmore mom of Peter - 6...
1540
Tracy Jamison
superbusymom3
Sep 13, 2007 8:08 pm
we will be leaving around 8 am and will get there around 4:30 5 pm we will probably just pick up some cookies or something if that is ok since anything that...
1541
Fatma McCauley
fatmarob
Sep 13, 2007 8:46 pm
I wonder if anyone could help me with understanding tests for GA1. My son Jeyan is now six months old and I live in paranoia as I am not convinced he is in...
1542
Tracy Jamison
superbusymom3
Sep 14, 2007 2:14 pm
Destiny's brother was tested shortly after she was diagnosed and her little sister was tested a couple of days after she was born both times they used a...
1543
Cindy Brasket Wyvill
cwyvill
Sep 15, 2007 3:54 pm
Hi Fatma, I can't speak to the CVS testing, as my son was diagnosed post-crisis, but as for testing the child, it's my understanding that the skin biopsy is...
1544
Jennifer-Lea Hagman
sunshine_926...
Sep 15, 2007 4:16 pm
I hardly ever reply to any posts on here becuase my daughter WAS diagnosed with GA-1, and has since been given a clean bill of health! She was diagnosed with...
1545
Danielle Fleck
zoesmom323
Sep 15, 2007 8:48 pm
Wow Jennifer! What an encouraging testimony. After the newborn screening did they test her DNA to see if she had the GA-1 Śmutationą in her genes? I have...
1546
Tracy Jamison
superbusymom3
Sep 15, 2007 11:13 pm
Thanks so much for everything we all reallly enjoyed seeing everyone and meeting a couple of new people everyone was so nice and friendly sorry we didn't see...
1547
Jennifer Young
jen_kev_cody
Sep 17, 2007 7:23 pm
Did your daughter ever have any blood tests/urine tests come back high or anything? Did you or your doctors think from the beginning it was a false positive?...
