I originally got on this list to try and find someone with symptoms like my daughter. Since then we have been to yet another doctor who thinks she may have...
ECrook33@xxx.xxx
Aug 5, 1999 7:55 pm
5
Edith, what's AIP--autoimmune something? Susan...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 6, 1999 12:45 pm
6
A quick search of search engine www.alltheweb.com displays multiple links to sites with info on this rare metabolic disorder. One such link at...
emtech-journey
emtech-journey@xx.xxxx
Aug 7, 1999 3:10 am
7
Dear parents, I am a MD treating patients with IEM, especially oraganic acidemias. I have in care also a family with now 2 children with isovaleric acidemia. ...
1travelsavingsalert@x...
Aug 8, 1999 7:52 am
8
We have just joined Aetna USHealthcare's Open Choice PPO plan. Is anyone enrolled with Aetna USHealthcare who is getting CoQ10 as a prescription drug? We've...
Arrants@xxx.xxx
Aug 7, 1999 6:35 pm
9
SUSAN, AIP IS ACUTE INTERMITTANT PORPHYRIA. IT IS THE NEW POTENTIAL DIAGNOSIS. HERE WE GO AGAIN! WE HAVE TO HAVE THE TEST AND SEND IT OFF TO MAYO AND SPEND 6...
ECrook33@xxx.xxx
Aug 8, 1999 12:06 am
10
Is anyone aware of CoQ10, or other vitamins needed for treatment of mitochondrial myopathy, being covered by Blue Cross Blue Shield?...
Zepolv@xxx.xxx
Aug 9, 1999 5:08 am
11
please unsubscribe me from this list. golynie@......
GOLYNIE@xxx.xxx
Aug 13, 1999 4:22 am
12
Has anyone heard about liver transplantation for MMA (methylmalonic acidemia) children as a form of healing? Who has experiences with liver transplantation?...
OGdeBuhr@xxx.xxx
Aug 15, 1999 7:30 pm
13
Would recommend strongly AGAINST considering liver transplant unless there are some unusual circumstances; althought the tranplant would be potentially...
Paul Benke
pbenke@xxxx.xxx.xxxxx...
Aug 16, 1999 7:44 pm
14
HOOORAYYY, Dr. Paul!!!!!...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 16, 1999 11:08 pm
15
Your letter made me think of 2 questions. 1. Does nephritis have to do with mito disorders? 2. Does acidosis cause bladder and/or kidney infections? Linda S. ...
Linda
joelinda@xxxxxxxx.xxxx
Jun 17, 1999 6:57 am
16
Has any heard of growth hormones in MMA ? Jennifer Edwards...
pddlft@xxxxx.xxxxxxxx...
pddlft@xxxxx.xxxxxxxx...
Aug 18, 1999 9:43 pm
17
Linda, As a 5-y-o, I myself had a mysterious glomerulonephrosis that required ACTH to save me. My daughter, now almost 15, has a rare vitamin B12 IEM. Others...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 18, 1999 11:30 pm
18
Susan, I guess I'm getting very tired and having trouble thinking tonight. Is what you had a type of nephritis? Why did they give you ACTH, an adrenal or...
Linda
joelinda@xxxxxxxx.xxxx
Jun 20, 1999 4:32 am
19
Message text written by INTERNET:iem-family@onelist.com ... acidemia) children as a form of healing? Who has experiences with liver transplantation?< Yes, I...
conrad cota
CCota@xxxxxxxxxx.xxxx
Aug 20, 1999 6:12 pm
20
Dr. Benke: My son is 10 years old, has MMa and is B-12 responsive. His MMA levels in the urine range from 2,000-5,000 and in his blood 200-350. Although this...
LGHARE@xxx.xxx
Aug 20, 1999 7:42 pm
21
Message text written by INTERNET:iem-family@onelist.com ... My son is 10 years old, has MMa and is B-12 responsive. His MMA levels in the urine range from...
conrad cota
CCota@xxxxxxxxxx.xxxx
Aug 22, 1999 12:31 pm
22
Yes, I've heard of families that have opted for this procedure. We have asked Dr. Koch in California to come and speak at the upcoming Metabolic Conference on...
LeeKatMN@xxx.xxx
Aug 22, 1999 12:49 pm
23
This is the first I've heard of a Metabolic Conference, (per Kathy Stagni regarding the March 18th conference in Taunton Massachusetts) Will there be much...
WSHeyer@xxx.xxx
Aug 23, 1999 8:53 pm
24
Kathy, really? Please would you tell me about the conference you've just mentioned. I couldn't find it on the website. Thanks! Susan...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 24, 1999 12:29 am
25
The Metabolic Conference that is held in Taunton, Massachusetts on March 18, 2000 is sponsored by the New England Connection for PKU and Allied Disorders. ...
LeeKatMN@xxx.xxx
Aug 25, 1999 1:50 pm
26
Thank you for the announcement, Kathy! Susan...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 27, 1999 12:11 am
27
Kathy, Will there be another bit of news on this? or will there be a number we can call for more info or to get onto a mailnglist? Thanks, Susan...
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 28, 1999 1:44 pm
28
Are you talking to me or some other Kathy? Kathy ... From: Susan L Rump To: iem-family@onelist.com Sent: Saturday, August 28, 1999 9:44 AM Subject: Re:...
Kathy
kathym@xxxxxx.xxxx
Aug 30, 1999 3:35 am
29
Yes, more information on the Metabolic Conference will be in the October issue of the OAA Newsletter and hope that the actual registration for the conference...
LeeKatMN@xxx.xxx
Aug 30, 1999 1:49 pm
30
Just a note in reply; sorry, do not check info from this list very often. I would like to say also that I am sorry, but really cannot respond to individual...
Paul Benke
pbenke@xxxx.xxx.xxxxx...
Aug 30, 1999 8:14 pm
31
Hi everybody! Sorry I haven't posted anything in a long while, just don't have much to write about. Heather (31 mos, GA1) is doing very well and starting to...
Ssmatts@xxx.xxx
Sep 1, 1999 12:58 am
32
Enzyme Deficiency Responsible for Some Sudden Death Cases August 30, 1999 Pediatric and Developmental Pathology/MedscapeWire A deficiency in the SCHAD...
Juhlmann
juhlmann@xxxxxx.xxxx
Sep 4, 1999 4:05 pm
33
I have a 20 month old foster daughter who has recently been diagnosed with MCAD. Does anyone have any information or advice for this condition. Thank You, ...
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