What is Shawn's diagnosis? Is he "normal" or does he have an organic acidemia disease? My son has Methylmalonic Acidemia and he is wayyyyyy under the chart...
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Linda
joelinda@...
Jun 7, 2000 2:51 pm
How does one unsubscribe from this list? Thanks, Linda ... From: LGHARE@... [mailto:LGHARE@...] Sent: Wednesday, June 07, 2000 5:24 AM To:...
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Kathy
kathym@...
Jun 7, 2000 11:47 pm
Hello, Shawn is 10 and has no official diagnosis. Just lots of labels. He has dysmorphic facial features, short fingers, epilepsy (under control w/Felbatol),...
78
TESSABUG@...
Jun 8, 2000 2:38 am
In a message dated 6/7/00 7:48:26 PM Eastern Daylight Time, kathym@... writes: << The GI mentioned this disorder where the top of the villa are not ...
79
TESSABUG@...
Jun 8, 2000 2:39 am
Thanks to those who responded................ as for the yeast, I lived the yeast nightmare with my oldest son and I do not believe it to be a yeast issue and...
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APalachek@...
Jun 12, 2000 9:51 pm
Hi Kathy, This sounds exactly like a girl we knew. She stopped growing when she was 7 y.o. Tests upon tests showed no abnormality. Finally, a dr. ran liver...
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TESSABUG@...
Jun 12, 2000 9:51 pm
If he has nasty BMs and vomiting I would suspect celiac disease...........I was diagnosed with it when I was 11yr, at that time I weighed 44pounds, wearing...
82
ncb00582@...
Jun 12, 2000 9:51 pm
Return-Path: <bookstor@...> Received: from WVNVM (NJE origin SMTP2@WVNVM) by WVNVM.WVNET.EDU (LMail V1.2d/1.8d) with BSMTP id 8052; Wed, 31 May 2000...
83
Linda
joelinda@...
Jun 12, 2000 9:51 pm
how do I unsubscribe from this? ... From: ncb00582@... [mailto:ncb00582@...] Sent: Saturday, May 27, 2000 11:52 AM To:...
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Paul Benke
pbenke@...
Jun 12, 2000 9:51 pm
This responds to the note about the unusual odor in Teresa's daughter's urine. You say that your daughter has "clinical diagnosis" of Angelman syndrome. Did...
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Clara Stone
cstone@...
Jun 12, 2000 9:51 pm
Therese Hi, can you help me with some info on homocystinuria. Is the Homocystine level high in urine and blood or just one of these? I have heard they diagnose...
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Kathy
kathym@...
Jun 12, 2000 9:52 pm
... tests, ... he ... zinc, ... it ... a ... Another thing Shawn does. He goes through periods where he does not want to eat much and sleeps a lot. One period...
87
Debby, Avi, Gershon, ...
drdmd@...
Jun 12, 2000 9:52 pm
Write to the Exceptional Parent magazine, parents describe their kid adn MD's also read the questions and may have some suggestions. www.eparent.com tell them...
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Therese Waters
workstar@...
Jun 13, 2000 9:21 pm
Clara - A doctor missed my daughters diagnosis because she took a midday urine sample. The right way to go about this - a FASTING sample of blood and have it...
89
susan.l.rump@...
Jun 14, 2000 1:12 am
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TESSABUG@...
Jun 28, 2000 10:56 pm
Thank you Paul for this info. In regards to a "clinical diagnosis" she only has AS by symptoms, genetically all tests for AS have been negative(FISH, ...
91
1TravelSavingsAlert@...
Jun 28, 2000 11:00 pm
... My name is Crystal Clack. My son has been diagnosed with Classic Maple Syrup Urine Disease. I have alot of questions and I need someone to talk to. We live...
92
MacPku@...
Jun 29, 2000 4:28 am
Crystal: I am the co-administrator of a support listserv for the birth defect known as PKU (phenylketonuria) which is very similar in treatment to that of...
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Kimandluke@...
Jun 29, 2000 4:28 am
Dear Crystal - My name is Kim and I have a 6 1/2 year-old son with Isovaleric Acidemia (IVA). I know that your son has MSUD but if you want to talk to someone...
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Therese Waters
workstar@...
Jun 29, 2000 6:27 pm
Our daughter has homocystinuria, another metabolic disorder in which a protein component - in this case methionine cannot be metabolized. There are many...
95
Rutinha@...
Jun 29, 2000 6:27 pm
PAULO & RUTH VILLELA RUTINHA@... I HAVE TWO KIDS WITH CLASSIC MSUD...
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Clint Kimble
kimble@...
Jun 29, 2000 7:52 pm
I have a foster daughter that has MCAD. Medium Chain ACYL CoA Dehydrogenase Deficiency. Is there anyone with this disorder that cold offer some advice? She is...
97
LeeKatMN@...
Jun 30, 2000 5:25 am
Hi - are you aware of the FOD support group? Their website is <A HREF="http://www.fodsupport.org/">http://www.fodsupport.org/</A>. They also have a...
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Christopher Friedrich...
cfriedri@...
Jul 1, 2000 5:03 pm
Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? Chris Friedrich, M.D.,...
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MacPku@...
Jul 1, 2000 9:25 pm
Dr. Freidrich: Thank you so much for making me aware of your adult PKU clinic. My son, Daniel, has been attending St. Christopher's Hospital for Children's...
100
susan.l.rump@...
Jul 2, 2000 12:44 am
... Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? ... Dear Dr...
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Christopher Friedrich...
cfriedri@...
Jul 2, 2000 2:59 am
You're thinking of Children's Hospital next door. We treat adults who "outgrow" CHOP's Metabolism Department at the Hospital of the University of Pennsylvania...
102
susan.l.rump@...
Jul 2, 2000 11:35 am
103
ncb00582@...
Oct 3, 2000 2:17 pm
Hey you guys, Cady's web page is updated, go check it out! Http://wvnvm.wvnet.edu:80/~ncb00582. Leslie...
104
yinger@...
Jan 24, 2001 11:52 am
A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive...
