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Marinesco-Sjogren Syndrome website A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive
yinger@...
Jan 24, 2001
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Web page Hey you guys, Cady's web page is updated, go check it out! Http://wvnvm.wvnet.edu:80/~ncb00582. Leslie
ncb00582@...
Oct 3, 2000
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    susan.l.rump@...
    Jul 2, 2000
    #102
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    Re: [iem-family] 21 y/o with PKU 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
    Christopher Friedrich MD PhD
    Jul 1, 2000
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    Re: [iem-family] 21 y/o with PKU ... 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
    susan.l.rump@...
    Jul 1, 2000
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    Re: [iem-family] 21 y/o with PKU 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
    MacPku@...
    Jul 1, 2000
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    21 y/o with PKU 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.,
    Christopher Friedrich MD PhD
    Jul 1, 2000
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    Re: [iem-family] MCAD Hi - are you aware of the FOD support group? Their website is http://www.fodsupport.org/ . They also have a
    LeeKatMN@...
    Jun 29, 2000
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    MCAD 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
    Clint Kimble
    Jun 29, 2000
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    Re: [iem-family] Mother on a mission PAULO & RUTH VILLELA RUTINHA@... I HAVE TWO KIDS WITH CLASSIC MSUD
    Rutinha@...
    Jun 29, 2000
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    Re: [iem-family] Mother on a mission Our daughter has homocystinuria, another metabolic disorder in which a protein component - in this case methionine cannot be metabolized. There are many
    Therese Waters
    Jun 29, 2000
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    Re: [iem-family] Mother on a mission 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
    Kimandluke@...
    Jun 28, 2000
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    Re: [iem-family] Mother on a mission 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
    MacPku@...
    Jun 28, 2000
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    Mother on a mission ... 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
    1TravelSavingsAlert@...
    Jun 28, 2000
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    Re: [iem-family] peculiar odors 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,
    TESSABUG@...
    Jun 28, 2000
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      susan.l.rump@...
      Jun 13, 2000
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      Re: [iem-family] peculiar odors(homocystinuria) 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
      Therese Waters
      Jun 13, 2000
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      Re: [iem-family] growth 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
      Debby, Avi, Gershon, Nechama & Yehudit
      Jun 12, 2000
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      More ... 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
      Kathy
      Jun 12, 2000
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      Re: [iem-family] growth 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
      TESSABUG@...
      Jun 12, 2000
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      [Fwd: [Fwd: [Fwd: Fwd: Surcharge on Emails!]] Return-Path: Received: from WVNVM (NJE origin SMTP2@WVNVM) by WVNVM.WVNET.EDU (LMail V1.2d/1.8d) with BSMTP id 8052; Wed, 31 May 2000
        ncb00582@...
        Jun 12, 2000
        #82
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        unsubscribe how do I unsubscribe from this? ... From: ncb00582@... [mailto:ncb00582@...] Sent: Saturday, May 27, 2000 11:52 AM To:
        Linda
        Jun 12, 2000
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        Re: [iem-family] peculiar odors 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
        Paul Benke
        Jun 12, 2000
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        Re: [iem-family] peculiar odors(homocystinuria) 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
        Clara Stone
        Jun 12, 2000
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        Re: [iem-family] growth 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
        APalachek@...
        Jun 12, 2000
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        Re: [iem-family] peculiar odors 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
        TESSABUG@...
        Jun 7, 2000
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        Re: [iem-family] growth 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
        TESSABUG@...
        Jun 7, 2000
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        Re: [iem-family] growth 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),
        Kathy
        Jun 7, 2000
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        Re: [iem-family] growth How does one unsubscribe from this list? Thanks, Linda ... From: LGHARE@... [mailto:LGHARE@...] Sent: Wednesday, June 07, 2000 5:24 AM To:
        Linda
        Jun 7, 2000
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        Re: [iem-family] growth 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
        LGHARE@...
        Jun 7, 2000
        #75
         
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