Botox

[tammyu...@hotmail.com]

Hey everyone, Nathan had his yearly follow-up appointment yesterday.
He grew 2 inches! That is exciting because he used to barely go up.
He had a little growth spurt. His doctor thought he was doing very
well. He is going to continue taking Mexiletine but we are going to
increase the dose to see if there are better results. We discussed
botox injections and I was wondering if anyone has had any or has
looked into it at all. I need to research it further of course. I am
just concerned with his eyes since ther are so squinted. The doctor is
going to schedule an appointment for him to see a specialist.

[Elizabeth G.]

Since I have never taken any prescribed medicines for SJS, I'm not
sure what the Mexiletine is for? I'm also not sure how Botox would
help his eyes open any further because I have not done any research on
it. I was thinking about getting the excess skin removed from my
eyelids and I think that would produce a better result (for myself).
Is he having trouble seeing because they are squinted? I only have
trouble with the excess skin sometimes b/c it blocks my periphial
vision. I'd be interested to hear what you find out, but personally,
*I* wouldn't do it because I would be afraid of the long-term
consequences of injecting some foreign matter into my body (but that
is just me).

[Elizabeth G.]

Tammy - I hope that didn't sound rude. I really WOULD be interested in
hearing what your specialist says on the matter. I was just stating my
own personal view/fear and I want you to know that I wasn't trying to
sway you in any direction or make you feel guilty if that is something
you decide to do. Sorry if it came across wrong! Please let me know
what you find out.

[Payne Aaron]

Hi Tammy,

I looked into Botox but I never had treatments. I didn't have a
specific area to treat. Insurance doesn't cover Botox and so I would
have had to pay about $400 per treatment.

thanks,
aaron

aaronpayne.com

[tammyu...@hotmail.com]

Well it would be covered on our insurance since Botox was originally
used for medical purposes, but of course many now use it if for
cosmetic. Any way, I understand that everyone is entitled to make
thier own decisions. I have looked at many options/procdures and I
want to know everything that is available for him. I would never do
anything for him that I think would be harmful.

On May 13, 4:08 am, Payne Aaron <aaron.t.pa...@gmail.com> wrote:
> Hi Tammy,
>
> I looked into Botox but I never had treatments.  I didn't have a  
> specific area to treat. Insurance doesn't cover Botox and so I would  
> have had to pay about $400 per treatment.
>
> thanks,
> aaron
>
> aaronpayne.com
>

> On May 13, 2009, at 12:02 AM, tammyurio...@hotmail.com wrote:
>
>
>
>
>
> > Hey everyone,  Nathan had his yearly follow-up appointment yesterday.
> > He grew 2 inches!  That is exciting because he used to barely go up.
> > He had a little growth spurt.  His doctor thought he was doing very
> > well.  He is going to continue taking Mexiletine but we are going to
> > increase the dose to see if there are better results.  We discussed
> > botox injections and I was wondering if anyone has had any or has
> > looked into it at all. I need to research it further of course.  I am
> > just concerned with his eyes since ther are so squinted. The doctor is

> > going to schedule an appointment for him to see a specialist.- Hide quoted text -
>
> - Show quoted text -

[Payne Aaron]

Hi Tammy,

I've found that the intrathecal baclofen pump really helps me with
tightness. I am weaning myself off of Dilantin in favor of baclofen.

Great news about Nathan's growth spurt! You know, I don't think I had
a chance to be a normal height. Three of four grandparents are short,
mom and dad are short and I have SJS!

thanks,
aaron

aaronpayne.com

[Desirae Rausch]

Tammy,

I havnt heard much about Botox either but I was wondering, what dose
of Mexiletine is he on? I'm on Mexiletine as well, im sure on a higher
dose bc im older but becareful uping doses. I've had a lot of trouble
with it effecting my heart. Be careful and just remember to follow up
with a cardiologist.

[Tammy Urioste]

Hey Desirae, 
 
He is taking one capsule a day 150 MG in the morning.  We are going to try a half capsule at night.  Do you like taking it?  How has is affected your affecting your heart?  If you don't mind how old are you, I don't think I have met you I just saw the last few messages recently?   Thanks!!

---

Tammy Urioste

 

 

 
> Date: Wed, 13 May 2009 12:42:06 -0700
> Subject: [SJS] Re: Botox
> From: desirae...@gmail.com
> To: schwartz-jam...@googlegroups.com

[Desirae Rausch]

Hey Tammy,

Yeah sorry I didnt really introduce myself.
I'm 21, I was takeing 200mg 3 times a day but the doctor took me down
to 150mg 3 times a day because I was having sharp chest pains. I have
been on it for atlest 10years but it just started causeing problems.
They sent me to the cardiologists last week and they said I looked
fine, so they tried to up my meds again but I wont take them. It hurts
way to bad. They think its just the SJS getting worse but i dont know
because I dont get the pains on the lower dose, I just get super
stiff.

On May 13, 4:31 pm, Tammy Urioste <tammyurio...@hotmail.com> wrote:
> Hey Desirae,  
>
> He is taking one capsule a day 150 MG in the morning.  We are going to try a half capsule at night.  Do you like taking it?  How has is affected your affecting your heart?  If you don't mind how old are you, I don't think I have met you I just saw the last few messages recently?   Thanks!!
>

> Tammy Urioste

>
>
>
>
>
> > Date: Wed, 13 May 2009 12:42:06 -0700
> > Subject: [SJS] Re: Botox

> > From: desirae.rau...@gmail.com

> > To: schwartz-jam...@googlegroups.com
>
> > Tammy,
>
> > I havnt heard much about Botox either but I was wondering, what dose
> > of Mexiletine is he on? I'm on Mexiletine as well, im sure on a higher
> > dose bc im older but becareful uping doses. I've had a lot of trouble
> > with it effecting my heart. Be careful and just remember to follow up
> > with a cardiologist.
>
> > On May 13, 12:02 am, tammyurio...@hotmail.com wrote:
> > > Hey everyone,  Nathan had his yearly follow-up appointment yesterday.
> > > He grew 2 inches!  That is exciting because he used to barely go up.
> > > He had a little growth spurt.  His doctor thought he was doing very
> > > well.  He is going to continue taking Mexiletine but we are going to
> > > increase the dose to see if there are better results.  We discussed
> > > botox injections and I was wondering if anyone has had any or has
> > > looked into it at all. I need to research it further of course.  I am
> > > just concerned with his eyes since ther are so squinted. The doctor is
> > > going to schedule an appointment for him to see a specialist.
>

> _________________________________________________________________
> Windows Live™: Keep your life in sync.http://windowslive.com/explore?ocid=TXT_TAGLM_BR_life_in_synch_052009- Hide quoted text -

[tammyu...@hotmail.com]

Hi everyone,

I have not looked into the intrathecal baclofen pump, is it better
than the Dilantin? How was your height when you were growing up? I am
just wondering because Nathan is probably like a foot and a half or
more shorter than his classmates.

On May 13, 10:39 am, Payne Aaron <aaron.t.pa...@gmail.com> wrote:
> Hi Tammy,
>

> I've found that the intrathecal baclofen pump really helps me with  
> tightness. I am weaning myself off of Dilantin in favor of baclofen.
>
> Great news about Nathan's growth spurt! You know, I don't think I had  
> a chance to be a normal height.  Three of four grandparents are short,  
> mom and dad are short and I have SJS!
>
> thanks,
> aaron
>
> aaronpayne.com
>

> >> - Show quoted text -- Hide quoted text -

[Elizabeth G.]

I was always the shortest in my class, but I'm a girl, so that was
acceptable. Now that I am older I don't really realize how short I am
(5' 2") - all my friends are still taller than me, but I don't think
I'm too short. Everyone else is my family is tall, except for one set
of grandparents.

[Payne Aaron]

Hiya Tammy,

My answers are below.

On May 14, 2009, at 10:10 AM, tammyu...@hotmail.com wrote:

>
> Hi everyone,
>
> I have not looked into the intrathecal baclofen pump, is it better
> than the Dilantin?

Doctors have told me that there are harmful long term side effects of
Dilantin. I've not had any side effects with the Baclofen pump so far.

> How was your height when you were growing up? I am
> just wondering because Nathan is probably like a foot and a half or
> more shorter than his classmates.

I've always been short. I don't know how much though. I am 5' tall now.

[Tammy Urioste]

Hey Desirae,
 
Do you know the dose you were taking in the beginning.  So you were about 11 when you first started taking it, about Nathan's age.  I am kind of worried since you said that you are having chest pains now.  So the lower dose was not helping as much with the muscle stiffness.  How do you think you would feel if you were not taking the medication?   Thanks!

---

Tammy Urioste

 

 

 
> Date: Wed, 13 May 2009 16:38:10 -0700
> Subject: [SJS] Re: Botox
> From: desirae...@gmail.com
> To: schwartz-jam...@googlegroups.com

[magda]

Hi..we are Magda and Marcos.
Teo(our son) is 11 years old now and has SJS type 1B.

He was diagnostic SJS when he was 2/3 years.
Firstable he is now a SUPERHAPPY boy...and he is Fine and healthy.
He started taking Mexiletine at the age of 3 and we think the
combination of it.
toghether with fisyoterapist ,and also he was taken Psicomotricity in
"Warm water".
He is now taking 300 mg of mexiletine daily and he is very confident
with others and have
friends(good ones) wich they understand how he is.
Once his Doctor(neurologist) suggested to give bottox to relax his
upper back muscles,but
since it was clear to Magda that was a matter mostly of "Looking
better",so she decided not to do it.
Plus the Injection has to be given every 6 months abd she wanted to
avoid the painfull thing for him.
Does anyone knows Spanish here?
Do you have Nathan´s pictures?
by the way...here in argentina,,Mexiletine is made by only one lab..
and they already said is not to be produced from 2010 to the future.
Is that happening in States as well?

We are in touch.

[Payne Aaron]

Welcome Magda!

aaron

[Tammy Urioste]

Hi,
 
This is Tammy, Nathan's mom.  We spoke a little a few years back, but we lost touch.  No I don't know Spanish fluently.  Wow Teo has gotten so big, such a cuttie.  Nathan is also taking mexiletine.  He is taking 150 mg in the morning, but we are going to try adding 75 mg at night so see if he gets better results.  Has Teo had any side effects?  I have not heard anything about the labs stopping the produce of it.  I can ask and see if anyone knows anything about that.  Nathan's pictue is on a family photo I think you can see it on the profile or map, did you see him?  Well it is nice to hear from you, and to know that Teo is doing good. 

---

Tammy Urioste

 

 

 
> Date: Fri, 15 May 2009 09:03:25 -0700
> Subject: [SJS] Re: Botox
> From: kalmac...@gmail.com
> To: schwartz-jam...@googlegroups.com