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iem-family · The Inborn Errors of Metabolism Family Support List(IEM) is for discussions and support of the families with kids or adults hav
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Re: [iem-family] growth   Message List  
Reply | Forward Message #77 of 104 |
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), hypertonia, "legally" blind with nystagmus, non-verbal,
tactile defensive autistic like and that R word. He had surgery for reflux 2
years ago. He started walking on his own at age 9.Shawn also loves music
Everything appears normal even his brain. He has however stopped growing.

We did 5 hours of testing with the endocrinologist and that all came out
normal. I went to a allergist who only did scratch tests. Seems as soon as I
mentioned we were seeing the GI his eyes glazed over. Shawn is having a
another enscopic exam next week. They are also going up his butt (what is
the word for that?) He was passing mucous the other day and does not have a
cold. The GI mentioned this disorder where the top of the villa are not
absorbing the carbohydrates. He also mentioned he did not go done that far
into his intestines when he did the exam in 97. Let me know if you need
more. I tend to forgot everything.

Kathy
----- Original Message -----
From: <LGHARE@...>
To: <iem-family@egroups.com>
Sent: Wednesday, June 07, 2000 8:23 AM
Subject: 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 at 11 years. Write back.
>





Wed Jun 7, 2000 8:20 pm

kathym@...
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Message #77 of 104 |
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... 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...
ncb00582@...
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May 29, 2000
3:27 am

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@...
Send Email
Jun 7, 2000
1:02 pm

How does one unsubscribe from this list? Thanks, Linda ... From: LGHARE@... [mailto:LGHARE@...] Sent: Wednesday, June 07, 2000 5:24 AM To:...
Linda
joelinda@...
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Jun 7, 2000
2:51 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),...
Kathy
kathym@...
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Jun 7, 2000
11:47 pm

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@...
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Jun 8, 2000
2:38 am

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@...
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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...
TESSABUG@...
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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:...
Linda
joelinda@...
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Jun 12, 2000
9:51 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...
Debby, Avi, Gershon, ...
drdmd@...
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Jun 12, 2000
9:52 pm
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