Hi! I joined this list in hopes of being able to talk with some people who have a child or knows someone that has a child with Isovaleric Acidaemia. My grand...
bettyj@xxxxxxxx.xxx
Oct 17, 1999 2:45 pm
41
... Hi, Betty, It's a good thing you found your way here, you'll find an easier time being able to use us as a sounding board or for advice. I know I've...
Leslie
ncb00582@xxxx.xxxxx.x...
Oct 21, 1999 10:31 pm
42
Hi Betty-- Welcome! I'd never heard of Isovaleric Acidaemia, but a quick search of "Isovaleric Acidaemia" at http:// www.alltheweb.com produced 31 hits, ...
emtech-journey
emtech-journey@xx.xxxx
Oct 22, 1999 12:18 am
43
Betty- God Bless your grandchild as you start this journey. When my daughter was diagnosed with a rare metabolic disorder, I did quite a bit of research. Some...
Therese Waters
workstar@xxxxxxxxxx.x...
Oct 21, 1999 8:43 pm
44
Subject: Re: [iem-family] New member Date: Thu, 21 Oct 1999 20:18:05 -0400 From: emtech-journey <emtech-journey@...> To: iem-family@onelist.com References: ...
emtech-journey
emtech-journey@xx.xxxx
Oct 23, 1999 2:34 am
45
Hi! I'm EJ Beauchamp, and I have a daughter that has isovaleric acidemia. We live in Redding, CA. She is 10 years old. She was diagnosed at 21 months when she...
EJ
ebeauchamp@xxxxxxxxxx...
Oct 27, 1999 3:40 am
46
Hello everyone, I would like to introduce myself and my family. My name is janette, my partner is Paul, and our children are Christopher and Adam. Adam has a...
Paul Gurrell
Paul.Gurrell@xxxxxxxx...
Nov 2, 1999 8:59 pm
47
does anyone have information on this disease particularly regarding a 6 mo. child. thanks, glenn grees@......
Glenn Rees
grees@...
Nov 11, 1999 4:42 am
48
My best friend's daughter was diagnosed with Methylmalonic Acidemia just last week. The baby is almost 6 months of age. We are looking for help and hope in...
Randy and Spring Hansen
hansen@xxxxxx.xxxx
Nov 12, 1999 6:41 pm
49
... Are you by any slim chance the Glen Rees who is the father of Micah Rees with Menkes Disease? If so, we'd love to hear from you! Kraig and Jennifer Saks ...
Jennifer Saks
jennifer@xxxxxxxx.xxxx
Nov 16, 1999 6:26 pm
50
From: "Glenn Rees" <grees@...> does anyone have information on this disease particularly regarding a 6 mo. child. thanks, glenn grees@... Hi- ...
emtech-journey
emtech-journey@xx.xxxx
Nov 17, 1999 1:53 am
51
hansen@... wrote: My best friend's daughter was diagnosed with Methylmalonic Acidemia just last week. The baby is almost 6 months of age. We are...
emtech-journey
emtech-journey@xx.xxxx
Nov 17, 1999 1:55 am
52
Sorry Glenn i have never heard of it. ... From: Glenn Rees <grees@...> To: <iem-family@onelist.com> Sent: Thursday, November 11, 1999 4:42 AM Subject:...
Paul Gurrell
Paul.Gurrell@xxxxxxxx...
Nov 17, 1999 10:42 am
53
Dear members, I am asking those who have kids with citrullinaemia (urea cycle disorder) how often are you giving oral sodium benzoate and arginine. Is it once...
mzaki@xxx.xxx.xxxxxxx...
mzaki@xxx.xxx.xxxxxxx...
Nov 20, 1999 3:56 pm
54
Message text written by INTERNET:iem-family@onelist.com ... Acidemia just last week. The baby is almost 6 months of age. We are looking for help and hope in...
conrad cota
CCota@xxxxxxxxxx.xxxx
Nov 20, 1999 8:25 pm
55
If you have your urine checked for methylmalonic acid and it is clear does that mean you don't have this disorder even if you have mild symptoms of this and...
Linda
joelinda@xxxxxxxx.xxxx
Nov 20, 1999 11:00 pm
56
Dear Dina, The usual dosing schedule for SB and arginine in children with UCDs is 4 times per day. Best regards, Cindy Le Mons Co-president National Urea Cycle...
Cynthia Le Mons
lemons@xxxxxxxxx.xxxx
Nov 21, 1999 3:29 am
57
Jennifer and family, we are the parents of Micah Rees although we have some very sad news to pass on. just this last Saturday, Nov 20th Micah passed away. he...
Glenn Rees
grees@xxxxx.xxxx
Nov 25, 1999 5:07 am
58
I am sorry. I have no children at the moment and have not heard of this disorder. Good luck. Spring ... From: Dina Ramadan <mzaki@...> To:...
Randy and Spring Hansen
hansen@xxxxxx.xxxx
Nov 26, 1999 1:49 am
59
Pam and Glenn, You do not know me. I am a person on the list because I feel my family has a mitochondrial disorder (no official diagnosis yet). Please accept...
Linda
joelinda@xxxxxxxx.xxxx
Nov 27, 1999 1:53 pm
60
My deepest sympathy to you and your family....
Janla@xxx.xxx
Nov 27, 1999 2:19 pm
61
"Chosen" Moms are Truly Blessed By Erma Bombeck Most women become mothers by accident, some by choice. A few by social pressures and a couple by habit. This...
Leslie
ncb00582@xxxx.xxxxx.x...
Nov 28, 1999 10:49 pm
62
Dear Glenn and Pam, We are *so* very sorry about Micah. You will probably be amazed to learn that Nathan's death was also on November 20th (1995). You know...
Jennifer Saks
jennifer@xxxxxxxx.xxxx
Nov 27, 1999 5:13 pm
63
OUR PRAYS ARE WITH YOU AT THIS VERY DIFFICULT TIME. lOVE. KIM AND DALE...
Scupper234@xxx.xxx
Nov 29, 1999 12:56 am
64
We will have a new e-mail address this weekend. We will e-mail or call you with the new address. Look forward to being able to talk to you again. Hope all...
Randy and Spring Hansen
hansen@xxxxxx.xxxx
Dec 9, 1999 2:22 pm
65
Does anyone have experience with bad diaper rashes with MMA? My 22 month old has had a diaper rash for the last three months. She has been treated by her...
Gator6709@xxx.xxx
Dec 10, 1999 3:02 am
66
I rarely post and do not know if this info will be of help but my ped told me to use AQUA-PHOR mixed with malox (yes the liquid antacid) for my daughter (she...
TESSABUG@xxx.xxx
Dec 16, 1999 1:54 am
67
No MMA experience but I did have one of my 3 children who experienced bad diaper rash and here are some suggestions-1) wash clothes and diapers with a really...
Therese Waters
workstar@xxxxxxxxxx.x...
Dec 16, 1999 7:02 pm
68
My son had the same problem with MMA and diper rash. Change the baby more often. It's own urine/feces has higher acid/toxins in it. Soak baby in Domboro(not...
LGHARE@xxx.xxx
Dec 17, 1999 3:16 pm
69
My oldest son Shawn is 10. He has stopped growing. He has been to the endocrinologist and now we are seeing the GI doctor again. They run tests, that come out...
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