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...
5
Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 6, 1999 12:45 pm
Edith, what's AIP--autoimmune something? Susan...
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emtech-journey
emtech-journey@xx.xxxx
Aug 7, 1999 3:10 am
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...
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1travelsavingsalert@x...
Aug 8, 1999 7:52 am
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. ...
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Arrants@xxx.xxx
Aug 7, 1999 6:35 pm
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...
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ECrook33@xxx.xxx
Aug 8, 1999 12:06 am
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...
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Zepolv@xxx.xxx
Aug 9, 1999 5:08 am
Is anyone aware of CoQ10, or other vitamins needed for treatment of mitochondrial myopathy, being covered by Blue Cross Blue Shield?...
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GOLYNIE@xxx.xxx
Aug 13, 1999 4:22 am
please unsubscribe me from this list. golynie@......
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OGdeBuhr@xxx.xxx
Aug 15, 1999 7:30 pm
Has anyone heard about liver transplantation for MMA (methylmalonic acidemia) children as a form of healing? Who has experiences with liver transplantation?...
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Paul Benke
pbenke@xxxx.xxx.xxxxx...
Aug 16, 1999 7:44 pm
Would recommend strongly AGAINST considering liver transplant unless there are some unusual circumstances; althought the tranplant would be potentially...
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Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 16, 1999 11:08 pm
HOOORAYYY, Dr. Paul!!!!!...
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Linda
joelinda@xxxxxxxx.xxxx
Jun 17, 1999 6:57 am
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. ...
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pddlft@xxxxx.xxxxxxxx...
pddlft@xxxxx.xxxxxxxx...
Aug 18, 1999 9:43 pm
Has any heard of growth hormones in MMA ? Jennifer Edwards...
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Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 18, 1999 11:30 pm
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...
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Linda
joelinda@xxxxxxxx.xxxx
Jun 20, 1999 4:32 am
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...
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conrad cota
CCota@xxxxxxxxxx.xxxx
Aug 20, 1999 6:12 pm
Message text written by INTERNET:iem-family@onelist.com ... acidemia) children as a form of healing? Who has experiences with liver transplantation?< Yes, I...
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LGHARE@xxx.xxx
Aug 20, 1999 7:42 pm
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...
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conrad cota
CCota@xxxxxxxxxx.xxxx
Aug 22, 1999 12:31 pm
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...
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LeeKatMN@xxx.xxx
Aug 22, 1999 12:49 pm
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...
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WSHeyer@xxx.xxx
Aug 23, 1999 8:53 pm
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...
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Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 24, 1999 12:29 am
Kathy, really? Please would you tell me about the conference you've just mentioned. I couldn't find it on the website. Thanks! Susan...
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LeeKatMN@xxx.xxx
Aug 25, 1999 1:50 pm
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. ...
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Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 27, 1999 12:11 am
Thank you for the announcement, Kathy! Susan...
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Susan.L.Rump@xxxxxx.x...
Susan.L.Rump@xxxxxx.x...
Aug 28, 1999 1:44 pm
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...
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Kathy
kathym@xxxxxx.xxxx
Aug 30, 1999 3:35 am
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:...
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LeeKatMN@xxx.xxx
Aug 30, 1999 1:49 pm
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...
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Paul Benke
pbenke@xxxx.xxx.xxxxx...
Aug 30, 1999 8:14 pm
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...
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Ssmatts@xxx.xxx
Sep 1, 1999 12:58 am
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...
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Juhlmann
juhlmann@xxxxxx.xxxx
Sep 4, 1999 4:05 pm
Enzyme Deficiency Responsible for Some Sudden Death Cases August 30, 1999 Pediatric and Developmental Pathology/MedscapeWire A deficiency in the SCHAD...
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Clint Kimble
kimble@xxxxxxxx.xxxx
Sep 5, 1999 3:34 pm
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, ...
