I really want to know...

[Elizabeth G.]

I've noticed that a lot of ppl have signed up to the forum recently.
I'm sure you all probably know each other already, but I'd really be
interested to hear something about you all or your loved one who is
affected with SJS.

So I guess my question is - who are you?

[Tammy Urioste]

Hi Elizabeth,  My name is Tammy and my son is diagnosed with SJS.  He is 9 years old.  I met Aaron when my son was about one.  I have been in contact mostly with Shirley, Aarons mom.  They are wonderful people.  I was searching the internet when my the doctors thought he had SJS and I found them.  He was diagnosed at about one and a half.  I have another son Jacob age 7 who is normal.  We all live in New Mexico along with my husband.  I had never heard of SJS until my son.  I am glad to met someone else with SJS and maybe ask you some questions. 

---

Tammy Urioste

 

 

 
> Date: Thu, 7 May 2009 12:59:20 -0700
> Subject: I really want to know...
> From: lizg...@yahoo.com
> To: schwartz-jam...@googlegroups.com

[Tammy Urioste]

Hi Elizabeth,  My name is Tammy and my son is diagnosed with SJS.  He is 9 years old.  I met Aaron when my son was about one.  I have been in contact mostly with Shirley, Aarons mom.  They are wonderful people.  I was searching the internet when my the doctors thought he had SJS and I found them.  He was diagnosed at about one and a half.  I have another son Jacob age 7 who is normal.  We all live in New Mexico along with my husband.  I had never heard of SJS until my son.  I am glad to met someone else with SJS and maybe ask you some questions. 

---

Tammy Urioste

 

 

 
> Date: Thu, 7 May 2009 12:59:20 -0700
> Subject: I really want to know...
> From: lizg...@yahoo.com
> To: schwartz-jam...@googlegroups.com
>
>

[Aaron Payne]

I'm Aaron Payne.

The facts:
Born in 1973.
Married to Annette since 2005.
Living in Indianapolis, IN.
No kids, just one crazy dog.
Graduated from IUPUI with BS in Physics.
Work as a programmer.

The SJS facts:
I was diagnosed at about 6 though it took a while to determine what it
is.
No siblings.
My dad and I are the first reported father-son pair with SJS.
We are in an article appearing in Muscle and Nerve Journal, 1981.
I feel wonderful when I have a fever.
I stay away from sugar as it increases my muscle tightness.
I have joint contractures at my elbows, wrists, knees, and ankles.
My feet are flat and my legs are rotated out about 45 degrees.
I have rocker-bottom feet.
My respiratory issues stem from the muscle tightness caused by SJS,
ie, asthma, apnea, fatigue.
I use Bipap/O2 at night and a Nebulizer as needed.
I have an Intrathecal Baclofen Pump at 167 microliters/day.
I take Dilantin to help with tightness (I don't have epilepsy).
I am able to eat and move about on my own.
I walk short distances with a cane (apartment, office) otherwise I use
an electric scooter.
My wife helps me with showers, dressing, combing hair, shoes, etc.
My mobility/range of motion has decreased over time.
5 feet tall, 150lbs, 6% body fat.
The first person I met other than my dad was Doug from Florida (see
the map).

Due to the recent activity on the group and the map I created I
decided to send out invitations to everyone I know with an SJS
connection.

Thank you to everyone who has joined.

thanks,
aaron

aaronpayne.com

[Elizabeth G.]

Here are a few facts about me:

My Life -
Born in 1978
1 sister (deceased) and 2 brothers - all normal
Graduated Louisiana Tech University with BS in Mechanical Engineering
Married since 2001
Gave birth via c-section in 2005 to a healthy baby girl
Have a Siberian Husky
Housewife and mother
Love scrapbooking, card making, stamping, photography, and shopping
Currently live on Whidbey Island, WA

SJS info -
Diagnosed at 2 1/2
21st case
Difficulty swallowing
Joint contractures in knees
Can walk, bike, and drive, although I have difficultly with stairs
I take Ibuprophen, asprin, or something similar for muscle pain
Frequent migranes
Trouble sleeping
I drink a lot of caffinated beverages to combat fatigue
Physical therapy did not help me, but I found Yoga does (although I do
not do yoga anymore)
5'2" - 100lbs

I'd be happy to answer anyones questions and hope to hear more about
everyone!

[Tammy Urioste]

I am writing for my son Nathan age 9
 
He lives with both parents
Mom stays home and goes to college full-time
Dad works as an electrician at a coal mine
One brother age 7 - normal
He is in 3rd grade- his teacher says he is one of the top students
(He didn't get that from me) he is well liked by the whole school
He is a lot shorter than his peers
Has 2 dogs and 1 pregnant cat
Loves playing video games, riding bikes, camping, fishing, jumping in the trampoline, reading,
He is inseperable from his younger brother
 
SJS info
 
He was diagnosed at about age 1 and a half
He gets tired after a while of walking- he hates going with us to the mall
Has difficulty climbing stairs and running
He is very stiff but he has never complained about it
He does physical therapy at school and I take him to a message therapist, we do streaches at home
He says it all helps him
Medication- mexiletine, he has his yearly doctors visit next week so maybe she will have more information on anything new. 
His eyes are very squinted, for his first year he had big eyes and about the time he was diagnosed they started to squint. 
I think that is about it...
My question to Elizabeht is...Has it affected your eyes or basically your facial muscles? 

---

Tammy Urioste

 

 

 
> Date: Thu, 7 May 2009 15:42:25 -0700
> Subject: Re: I really want to know...
> From: lizg...@yahoo.com
> To: schwartz-jam...@googlegroups.com
>
>

[Elizabeth G.]

I have terrible vision! I have astigmatism and need glasses, but can
wear contacts. My eyes are very 'squinty' - especially when I smile. I
have a lot of excess eyelid skin and I'm thinking about having it
removed. That may help my eyes become more 'wide' looking. I still
have ppl ask me if I'm 'all right' or upset, even though I am smiling
(which I still find rather annoying). I wear sunglasses a lot when
outdoors because excess light sometimes gives me a migrane.

I used to have arthritis in my knee caps when I was younger and they
would actually make a 'popping' noise whenever I would bend them. We
all used to laugh that it sounded like Rice Crispies. A doctor
recommended taking baby asprin for awhile and then it went away and
never came back. My leg muscles are the worst and when I was little
they used to be super tense when I would sit down, but then would
relax slowly over time. Now I only have that problem occasionally. I
can sit down and they will bend with me!

I LOVED to read when I was younger and I believe it helped me be as
smart as I am today. I also used to get VERY tired when walking
around, but I found for me that I just got used to it with age and,
since it is an everyday occurance, I started to become somewhat numb
to the pain and only noticed it after a certain amount of time or
activity. I cannot run. I may be able to sprint for about 10 seconds,
but not extremely fast and I feel like I could have a heart attack
afterwards - haha! Hope this helps! It sounds like me and your son
could be very similar in severity - he may be better off than I am!

[Tammy Urioste]

Thank you Elizabeth, this is all very helpful.  I know exactly what you mean...Many times people ask Nathan, whats wrong, you look so sad.  He never says anything but it bothers me a lot.  I am very protective of him.  I try to be involved with him at school so that I can keep an eye out.  I always want to make sure that no one harms him.  I know that I cant prevent this because people are so mean.  So far we have not had any problems at school.  Everyone knows him there and they all look out for him.  I am worried when he goes to middle school and there will be a lot of new students.  Nathan's younger brother Jacob is a grade below him so they look out for each other.  I think I worry too much because Nathan is such a strong boy.  He has this awesome personality, very caring, even tempered, positive, and so smart.  I wonder if SJS affected the brain somehow so that smartness is a plus.  You seem very smart and other with SJS.  And like I said he didn't get that from me.  Nathan may lack in some thigs, but he is very smart.  He is so into school.  When he get a low grade on an assignment, and I mean like a C, he is so upset, like the world is ending.   
 
Nathan wears glasses too.  Nathan has very crocked teeth and a lot of crowding.  I have been taking him to a Ortho doctor because he will need braces.  How were your teeth?  Even though Nathan does get tired he don't complain about the stiffness.  I think that he is just used to being stiff that he don't know any other way.  He has only complained about getting tired.  It seems like Nathan has improved some within the last year.  I am not sure if now that he is getting older that he learned to work with the stiffness better.  When he was younger there were times when he walked that he didn't bend his knees and we would have to always have to remind him to bend them.  It has been a while since he was done that.  His walk looks a lot better.  Nathan cant run either, he tried to I guess sprint like you said, he its only for a few paces.  Another question...Are your muscles very defined, Nathan has a six pack and when he flexes his biceps are popped out?  Within time has your condition got better or worse? 
 
Thank you so much for sharing....TTYL

---

Tammy Urioste

 

 

 
> Date: Thu, 7 May 2009 22:09:26 -0700
> Subject: [SJS] Re: I really want to know...
> From: lizg...@yahoo.com
> To: schwartz-jam...@googlegroups.com
> upste

[Elizabeth G.]

Wow, Tammy! You have such great questions and I can't believe that
I've forgotten to even mention all of the things you just talked
about! You might just want to get used to ppl asking him 'whats
wrong'. I still get that at least once a month, unfortuneatly. Nathan
should come up with a good response that he is comfortable with
saying. I usually say, "I'm doing great, thanks for asking. How about
you?" (and smile as big as possible). I still am very, I guess you
could say paranoid, around ppl who whisper b/c I naturally assume they
are talking about me. It still makes me uncomfortable when ppl stare.
My husband says that he never notices anyone staring at me, but he can
be somewhat unobservant sometimes!

I moved around a LOT as a child (my dad was in the military), so every
couple of years, I had to go to a new school and start over. I'm glad
that Nathan at least will be staying in the same school. Children who
didn't know any better were very mean to me, especially the boys
because apparently I wasn't 'pretty enough' to them. Of course, I
couldn't control them, let alone my body, so I started to concetrate
on things I COULD control - like my grades. I'm sure that is why
Nathan is so upset when he gets a C - I was the exact same way! I
wanted to please my parents with something that I COULD do, and a C
just would never do (for me - they were proud of me no matter what). I
was always in the honors classes and graduated as the saludatorian of
my high school - I know Nathan is on his way!

You may want to discuss with Nathan about going to middle school and
how there will be kids there who don't understand and some will
probably call him names. They do that out of fear of the unknown, so
it is going to be Nathans job to 'teach' them (since you won't be
there). Nathan is going to have to fight some battles on his own. And
really, he won't be entirely alone - he'll have his friends to stand
behind him. They can teach ppl too.

My mouth was extremely crowded when I was young. My pallete (the roof
of my mouth) is extremely high and used to be close together. When I
was in 5th grade, I got a roof extensioner to push it apart. Around
then I also had orthadonics surgery and had all of my extra teeth
removed (including my wisdom teeth buds). I then had braces on for the
remainder of my teeth for many years. I now have retainers that I wear
every night - I will have to wear them forever since the muscles in my
face shift my teeth slightly when I'm not wearing the retainers. I
have only 20 teeth.

When I was little, I used to walk very stiff legged. I used to walk a
lot on my toes b/c it was easier for me. Then I had to start
remembering to bend my knees. I believe that helps remind the leg
muscle to not tense up so much when you sit down too. My muscles used
to be more defined when I was younger. I used to have a very flat
stomach. Alas with age, my motabolism has started to diminish and that
is something else I have to work at. I was ALWAYS skinny when I was
younger. I weighed 80 pounds until I got to college. Now I *try* to
stay at around 100 pounds because it looks better on my body type and
its easier on my muscles. I *did* get up to 127 when I was pregnant
and still weighed less than all of my friends! I now have problems
with my back, neck, and knees (not from being pregnant, just old age I
guess). My knee problem stems from sitting criss-cross a lot, so I
avoid that. Nathan probably won't have a problem with that until after
college, but just keep that in mind IF his knee starts to hurt BEHIND
his knee cap.

It sounds like you are on the right track. I can't imagine what it is
like to be a parent of a child with a disability. I feared for my
unborn child that she would have problems and how I would deal.
Thankfully, she is fine and I only have the aggravation of dealing
with her eczema, food allergies, and thumbsucking. All of these are
trivial in comparison, yet I still worry about them! I admire all of
you mothers who have a child with SJS. That is why I came here - to
give back some of the help my mother gave me. Also - if you would like
to get in contact with my mother, I can send you her e:mail as well -
she'd be more than happy to help.

[Aaron Payne]

Elizabeth,

You should invite your mother to the group. I would love to hear her
take on SJS as well.

Everyone,

I don't ever remember being stared at as a kid. My wife notices it
when we are out and about
but I don't mind if people look at me. It makes sense that people
wonder about us. I used to have a
very defined musculature. People see the muscles along with the
tightness and difficulties and
it is a contradiction.

When people asked me why I walked funny I told them about SJS.

thanks,
aaron

--
aaronpayne.com

[tammyu...@hotmail.com]

Hi there, Yeah you can give me your moms address or unless she wants
to sign in the the group. By the way I love your family picture.
Your daughter is such a cuttie. I want to post a family picture but I
am not sure how. I had some more to talk about but we are outside
putting up a fence today. I will write more later.

[Aaron Payne]

Hi Tammy,

Send the pic to me and I'll add it to the map.

thanks,
aaron

--
aaronpayne.com
aaron....@gmail.com

[Aaron Payne]

Hi Tammy,

I added the pic of your family to the map.

http://maps.google.com/maps/ms?hl=en&ie=UTF8&msa=0&msid=111736247805060931574.0004692f155c0f4a9d2e6&ll=26.74561,-77.695312&spn=142.315272,360&z=2

thanks,
aaron

> aaron.t.pa...@gmail.com

[Elizabeth G.]

Tammy - I sent my mother your e:mail address so you can coorespond
that way. She doesn't quite know how forums work, so it will be easier
that way. I hope that is ok. Feel free to ask her anything - she will
be completely honest with you!

-Liz

[Aaron Payne]

Hi Elizabeth,

I can add her. All she would have to do is send messages to
schwartz-jam...@googlegroups.com. We would all benefit from
her voice.

thanks,
aaron

--
aaronpayne.com
aaron....@gmail.com

[acke...@sbcglobal.net]

My son Aryeh was diagnosed with sjs before his first birthday.  He is now 4.5 and a great kid.  Our first year and half were very rough not so much due to the sjs symptoms but because of his general weakness in eating and fighting off infections.   He has very low muscle tone.   We got him started on pt very early and after graduating from a walker he now walks on his own with ankle high orthotics.  He is very intelligent and musically inclined.  He is mainstreamed in school and by all appearances he looks like a regular kid except when he walks.  He has trouble walking long distances and negotiating stairs.   His case is somewhat odd in that he does not have all the same charactheristics of sjs that others seem to have.  He has no orthopaedic issues and his vision is good.  We took him off tegritol and things got much better.   That's about it.   Aryeh's dad --- On Thu, 5/7/09, Elizabeth G. <lizg...@yahoo.com> wrote:

[Payne Aaron]

Welcome Aryeh's dad! aaron