Virus

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debraca...@verizon.net

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Dec 15, 2009, 3:37:22 PM12/15/09
to schwartz-jam...@googlegroups.com

To Anyone,
 
My son Jack will be 5 next week....he got a mild virus ( no fever, runny nose and cough) then his joints were swollen and muscles tight...he was so stiff, he couldnt move.  The pain was so terrible, he cried in agony when we tried to lift him for bathroom or bed.  this happened to him last year around this time too.  Does anyone know if this is a common side effect for SJS kids when they have a cold...perhaps due to the fatigue, etc???  He's much better now, but for a few days it was heartwrenching.
 
Thanks for any insight you can give.
Debbie Campbell
  
Dec 14, 2009 02:17:12 PM, schwartz-jam...@googlegroups.com wrote:
Hi Magda,

I'm assuming you mean the english phenytoin or Dilantin for fenitoina.
I've taken Dilantin since childhood without issue.

I really want to learn spanish.

thanks,
aaron



On Dec 13, 2009, at 11:26 AM, magda wrote:

> Hola! algunos de ustedes probo el tratamiento con FENITOINA ?
>
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Payne Aaron

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Dec 17, 2009, 4:06:37 AM12/17/09
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Hi Debbie,

My muscles actually feel better when I get an infection. I move much
better and my muscles feel like they can relax.

thanks,
aaron

Elizabeth G.

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Dec 17, 2009, 9:00:48 AM12/17/09
to Schwartz-Jampel Syndrome
Debbie -

It sounds like your son might be gettting a body flu. That still
happens to me. My muscles get so sore and tired that I don't want to
move. He will more than likely get it every year since he goes to
school. I get mine now b/c my daughter goes to pre-school and brings
it home. It will help to give him some hot baths (as long as there is
no fever) and pain relever and maybe a massage.

Merry Christmas!
-Liz

debraca...@verizon.net

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Dec 17, 2009, 1:46:34 PM12/17/09
to schwartz-jam...@googlegroups.com
Thank you Liz...I really appreciate your input.  Thanks for taking the time.
 
Debbie

debraca...@verizon.net

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Dec 22, 2009, 10:51:02 AM12/22/09
to schwartz-jam...@googlegroups.com

Happy Holidays Everyone,
 
Thank you to everyone who responded with such helpful information regarding Jack's Virus....his symptoms have all but disappeared and things are back to "normal".  I have a question regarding conveyances...Jack will be starting Kindergarten in Sept.  The school is quite large and we will need to provide him with some sort of assistance to get him from class to class on time and something that will offer relief from his fatigue throughtout the day.  A wheelchair is out of the question for me.  He simply doesnt need it and he needs to walk when possible.  I found what I believed to be the perfect solution in a EV Rider Mini...It is a powered stand or sit (much like a segway) but with 3 wheels.  And it is designed with children and little people in mind. It is medical not recreational. The company has a durable medical equipment license.  The problem for us is that it is just a little to tall.  at 40" Jack will not be able to see over the bar and would have his arms up over his head to drive.  Is anyone aware of something like this that would suit a 5 year old who stands 40"???? Or I would welcome alternative ideas.  Anything you all have to offer is so greatly appreciated.
 
Happy New Year.
Sincerely
Debbie Campbell


Dec 15, 2009 02:37:35 PM, schwartz-jam...@googlegroups.com wrote:

To Anyone,
 
My son Jack will be 5 next week....he got a mild virus ( no fever, runny nose and cough) then his joints were swollen and muscles tight...he was so stiff, he couldnt move.  The pain was so terrible, he cried in agony when we tried to lift him for bathroom or bed.  this happened to him last year around this time too.  Does anyone know if this is a common side effect for SJS kids when they have a cold...perhaps due to the fatigue, etc???  He's much better now, but for a few days it was heartwrenching.
 
Thanks for any insight you can give.
Debbie Campbell
  
Dec 14, 2009 02:17:12 PM, schwartz-jam...@googlegroups.com wrote:
Hi Magda,

I'm assuming you mean the english phenytoin or Dilantin for fenitoina.
I've taken Dilantin since childhood without issue.

I really want to learn spanish.

thanks,
aaron



On Dec 13, 2009, at 11:26 AM, magda wrote:

> Hola! algunos de ustedes probo el tratamiento con FENITOINA ?
>

Elizabeth G.

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Jan 3, 2010, 2:59:00 PM1/3/10
to Schwartz-Jampel Syndrome
Hello Debbie!

How exciting that Jack is starting Kindergarten soon. That was a long
time ago for me, but I do remember a few things that my teachers did
to help me out (after my mother spoke with them, of course). Most of
my teachers let me leave 2-5 minutes before the end of class to give
me ample time to get to my locker, go to the bathroom and get to the
next class on time. A few of them even allowed me to leave my
classroom books in the classroom, or kept a spare there for me. Also,
the school issued me another set of books to leave at home to do my
homework/study so I wouldn't have to carry the heavy load home on the
bus. Those can be very hard on your back. Some of these may not apply
right now, but keep them in the back of your mind for the future!

Best of luck to Jack (and you).

debraca...@verizon.net

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Jan 4, 2010, 3:09:44 PM1/4/10
to schwartz-jam...@googlegroups.com
Wow, those are really great suggestions.  I really appreciate it.  Happy New Year.
 
Debbie
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