A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive...
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...
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...
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...
... 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...
Teresa- My daughter has homocystinuria and she definitely has an odd odor to her urine. It is hard to describe but very distinctive. Although she is being ...
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...
... Kathy, It seems to me during my nursing training that one of our Peds books had a picture of a child looking just like what you describe. I believe the...
... 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...
This is going to sound weird but my daughter occasionally gets what I call a "saltine cracker" odor..............does anyone else have a child that gets this...
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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...
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...
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...
"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...
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...
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...
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...
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...
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...
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...
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...
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: ...
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