schwartz jampel
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joy
May 16, 2009, 11:48:29 AM5/16/09
to Schwartz-Jampel Syndrome
Hello Aaron, Hello Magda...its been a while
For those that don't know me....I have a son with SJS who is 17 years
old. He is doing great with managing his symptoms. He takes
Tegeretol and does very well with it. He was diagnosed at around 18
months old. It was a scary first few years as he was sooooo sick, but
now is is better and usually only sees a doctor (neurologist) once a
year. He is about to graduate High School, he is brilliant. His name
is Chase.
Chase has all of the differences you all speak about. He is about 5'5
inches tall...weighs about 135 or 140. he eats like a pig. He gets
tired sometimes and gets more stiff. He has joint contractures in his
elbows, wrists, and knees. He use to walk on his tippy toes too.
For those that don't know me....I have a son with SJS who is 17 years
old. He is doing great with managing his symptoms. He takes
Tegeretol and does very well with it. He was diagnosed at around 18
months old. It was a scary first few years as he was sooooo sick, but
now is is better and usually only sees a doctor (neurologist) once a
year. He is about to graduate High School, he is brilliant. His name
is Chase.
Chase has all of the differences you all speak about. He is about 5'5
inches tall...weighs about 135 or 140. he eats like a pig. He gets
tired sometimes and gets more stiff. He has joint contractures in his
elbows, wrists, and knees. He use to walk on his tippy toes too.
Aaron Payne
May 16, 2009, 11:54:29 AM5/16/09
to schwartz-jam...@googlegroups.com
Kalma Catering
May 16, 2009, 12:17:33 PM5/16/09
to schwartz-jam...@googlegroups.com
HI joy!! i remember you! How are you? how is chase?!
have you chase ' pictures?¿? i will like see he...
magda
2009/5/16 joy <darntha...@hotmail.com>
Elizabeth G.
May 16, 2009, 12:18:35 PM5/16/09
to Schwartz-Jampel Syndrome
Hi Joy!
I saw on the google map that you are located near Shreveport, La. Is
that correct?
I saw on the google map that you are located near Shreveport, La. Is
that correct?
Payne Aaron
May 16, 2009, 12:28:17 PM5/16/09
to schwartz-jam...@googlegroups.com
Hi Everyone,
I put people on the map in the state or country they live in and not
at their exact location.
thanks,
aaron
I put people on the map in the state or country they live in and not
at their exact location.
thanks,
aaron
Elizabeth G.
May 16, 2009, 12:32:55 PM5/16/09
to Schwartz-Jampel Syndrome
Ok - thanks for letting me know that Aaron.
The reason why I ask is that I often visit Shreveport to stay with my
folks while my hubby is deployed and if Joy and Chase don't live too
far away then I would love to get together and meet. I'm sure my mom
would love to come too!
Joy, if you would be interested, you can e:mail me privately your
location. I will be in Shreveport from November - May.
The reason why I ask is that I often visit Shreveport to stay with my
folks while my hubby is deployed and if Joy and Chase don't live too
far away then I would love to get together and meet. I'm sure my mom
would love to come too!
Joy, if you would be interested, you can e:mail me privately your
location. I will be in Shreveport from November - May.
Kalma Catering
May 16, 2009, 1:00:34 PM5/16/09
to schwartz-jam...@googlegroups.com
Payne Aaron
May 16, 2009, 1:02:13 PM5/16/09
to schwartz-jam...@googlegroups.com
Tammy Urioste
May 16, 2009, 2:03:23 PM5/16/09
to SJS Google Group
Hi Joy,
Nice to hear from you. Nathan was on Tegretol when he was younger too. It worked well but he seemed to get sleepy with it. Wow chase is about to graduate! Well talk to you later:)
Date: Sat, 16 May 2009 18:17:33 +0200
Subject: [SJS] Re: schwartz jampel
From: kalmac...@gmail.com
To: schwartz-jam...@googlegroups.com
Nice to hear from you. Nathan was on Tegretol when he was younger too. It worked well but he seemed to get sleepy with it. Wow chase is about to graduate! Well talk to you later:)
Tammy Urioste
Date: Sat, 16 May 2009 18:17:33 +0200
Subject: [SJS] Re: schwartz jampel
From: kalmac...@gmail.com
To: schwartz-jam...@googlegroups.com
2009/5/16 joy <darntha...@hotmail.com>
elbows, wrists, and knees. He use to walk on his tippy toes too.<br
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