overheating

[jonnell]

Hi do any of you have emotional issues when you get overheated or out in the sun for long periods.  Jenna came home from school today(they had a outdoor play day)  Since she got home she has done nothing but cry about every little thing, no one likes her,  her daddy hollered at her,  I hollered at her, its like she is making stuff up in her mind.  She has the maylar rash and her nose is just running. 

[dbab]

I'm sorry to hear about Jenna.  Would it be possible to discuss with her school or teacher that she cannot be in the heat/sun?  Maybe a note from the doctor to reinforce?

I'm extremely sun sensitive.  I get the rashes but I also get fever, nausea, chills, and fatigue.  It's very similar to suffering from the flu and I know that my emotions are all over the place.  I usually just want to be by myself because trying to talk or interact with someone just makes me feel worse.  If she can tolerate it, I would give her a cool rag to use on her face and body.  She may feel better doing it herself (I know how 4 year olds are ).  Sounds like she needs to rest.  Poor thing!!! 

[jaygee]

Aw, I hope she is feeling better soon.  It is probably hard for her to express how she feels, being so young.   xx

[jonnell]

Thanks guys.  Ive talked to the teacher and the school nurse they know about Jennas condition and that she cant tolerate the heat, but it gos in on ear and out the other.  That whole she dont look sick thing.  And now she is on plaquinil and I dont think you are suppose to be in the sun with that.  Thank goodness school is almost out.    Hugs and Kissess   Jonnell and Jenna

[tuckerdog]

Is it possible that the overheating and or sun has caused a migraine headache?

[jonnell]

It could be she does complain a lot of headpain.

[jonnell]

Does overexposure to the sun cause migranes in sjs?

[wen.uk]

Hi there

Poor little thing, sounds like she is having a miserable time of it.  If I get too warm, or spend too long in the sun it can make me feel pretty lousy too so have to be careful.  There was an article in a UK magazine a few weeks ago about a lady who goes stir crazy from the sun/heat who was eventually diagnosed with lupus, and I know a lot of SjS sufferers have very similar problems.  It must be so hard for you to try to explain to a young child who wants to play out and have fun with all the others about her limitations.  Try and make a game out of staying cool with wet flannels, here in the UK we can buy something called a chillow, which is like a pillow but has a special lining you fill with cold water and it remains cold.  Fab for hot flashes so may well help her too as she can hug it close to her body to cool down.
Wen x

[jonnell]

Wendy,  thanks for the advice, im going to look into that pillow.  Hugs and Kissess   Jonnell and Jenna

[Redetha1]

I am retiring from teaching this year.  The heat drives me crazy.  My face get red and I become so tired that I can't function.   That eliminates the outdoor time for me.  Suggestion:   Have the doctor write on his RX pad that Jenna can not be in the sun for long hours.  Don't know where you live but in US the school must follow the doctor's orders.  I teach special education.  If you have any connection with that, the law must be followed.   Good luck.  Hugs to you and Jenna.  Redetha

[jonnell]

Just to let you guys know I ordered one of those pillows for Jenna Chillo(on line) Ill let you know how she likes it.  Thanks for the advice about the teacher and school.                Hugs and Kissess   Jonnell and Jenna

[Dolly Dimples]

  Jonelle, i really believe that this complaint does make one very emotional indeed..

                I can cry so easily now, and I know half the time it's just  me being sorry for myself.
.I also get so easily irritated with my OH, who I feel sorry for at times, as he has his own problems to deal with..

   It's when I visit this site that I feel guilty , reading about those who are so much sicker than I am,

              So remember,  It's a lot for us grown up's to deal with, let alone your little one to cope with..
                                       Bless Jenna,  hugs Dolly.x
           

[jonnell]

Dolly,  I think the hardest part is not being to do anything about it.  There is no miracle cure with SJS u guys just grin and bear it,  nothing really makes you feel better.  That is the depressing part its like having the flu everyday.   No matter how I try to fix things for Jenna I cant, I can just love her and try to make it easier for her.  Thank you for all the hugs and well wishes for her.  It makes us feel better.    Hugs and Kissess   Jonnell and Jenna

[coopwall]

Jonnelle,
I hope Jenna gets better.  Actually I've read that Plaquenil makes us more sun sensitive.  Ask your Dr.  that factual info should make the school nurse take notice.

Even without that fact, Most of use Sjoggies can't tolerate the heat and sun at all.  I've been that way as a child. (I also remember the fibro symtoms early.) My mother kept me out of the sun whenever possible because she noticed I had trouble.  AFter an hour in the sun, I have breathing problems.  Not to mention that my fair skin would have blisters by then.

Good luck to you, Jenna and all your family who are trying to support her. 

Coopwall (in Sunny New Mexico--i never go out any time of year without a hat!!)

[SassieCat]

When it's hot the heat feels like it just wilts my body.  I feel drained and really miserable.  Poor Jenna, too bad that she has uncaring school personnel.  In our schools, the kids all are miserable.  They don't like to turn on the air conditioning because of the electric bills incured.  And 30 students in a class make it hotter and smelly, or so the teachers have said.