Sun and fever

[jonnell]

Hi friends its me again.  I wonder if any of you get fevers after being in the sun.  Jenna had her beach trip day before yesterday,  I went with her(I didnt want her to miss it)   Yesterday she ran a fever all day and complained of her head hurting her, she had the rash under eyes and accross nose(which im used to)  Also I noticed she has some bruiseing(peticia) in places the got no sun(could that be from plaquinil?)  This is so hard how do you balance the disease with her being a little girl and having fun,  she had so much fun at the beach it made me so happy but yesterday she was miserable.   Hugs and Kissess   Jonnell and Jenna

[Scottietottie]

Hi Jonnel

Sorry Jenna's poorly. You mentioned she was sun sensitive before - well the Plaquenil can make you sun sensitive too, so she's probably more sun sensitive than she was before.

If I spend a lot of time out in daylight (it doesn't even have to be all that sunny) I get cracking headaches and feel nauseous. Now I don't have SjS as bad as Jenna does. It doesn't give me fevers for instance.

Her day in the sun could have set off a flare. If she's developing new symptoms I'd discuss thenm with your doc.

Take care - Scottie 

[Patze]

Hi Jonnell,

I'm with Scottie, mine isn't nearly as bad as Jenna's either, but I too get so drained if I'm out in the sun for any length of time (and I used to be a sun worshiper).  I also turn red very quickly and can burn in a heartbeat (got to be the Plaquenil).  The headaches are not as bad as the migraines I now get, but they can be miserable.   

Give that baby a hug for me, will you?

Take care -

Patze

[jonnell]

Thank you guys she gives you a hug back.  Do you know if plaquinil can cause brusing?

[Patze]

Hi jonnell,

I often get weird bruising, but I also have a genetic blood disorder (plus some other things) and have to take aspirin as a preventative so that maybe part of my problem.  Does Jenna get aspirin as part of her meds regime?


Patze

[jonnell]

No she doesnt get asprin but im starting to wonder if she has a low platlet count,  She has these little pinpoint brusies on her arms.

[lilbitz]

Hi Jonnell so sorry to hear about your little one. I get fevers  after I have been in the sun and also little bumps all over my face along with a bad headache and vomiting. The symptoms get so severe that I have to go to the GP to get shots .I also get the peticia in places that are not exposed usually all over my stomach not sure why.I know it is hard to keep kids out of the sun as I have 4 of my own and I am going through pretty much the same thing with my daughter.Good luck and I hope Jenna starts to feel better.

[jonnell]

Lilbitz, thank you I was really starting to worry.  Does you daughter have sjs or autoimmune issues?  I thought things would get better as she got older, but I think they r getting worse.  Its frustrating this site has really helped me, you are all wonderful.    Hugs and Kissess   Jonnell and Jenna

[Scottietottie]

Hi Jonell 

I don't know for sure but I wouldn't think the Plaquenil can cause bruising. NSAIDs and aspirin can cause bruising. I was taken off NSAIDs because of it.

Take care - Scottie 

[lilbitz]

Hey Jonnell we are not exactly sure what is going on with my daughter yet I believe it is autoimmune she has almost all the same SJS symptoms I do her symptoms started just a few months after mine.She had to quit taking gymnastics because her joints were so sore and swollen she really loved gymnastics and was so good at it but her body hurt her so bad.She also has
a mild form of autism and we are trying to deal with that it is hard with doctors with her because of her emotinal state.I find it weird that we got all the symptoms at around the same time I think it happen so that I could help her and know where to look for answers.Thanks for asking I will let you know what we find out.

[jonnell]

Hi its weird that you say that because after I gave birth to Jenna I started to get sore muscles,  problems with my eyes,  sensitivity to the sun,  I thought I had lymes but tests were negative,  then when Jenna was 3 we found out about her sjs,  and it seems like my symptoms keep getting worse,  Im almost at the point that Im going to get my ana tested.  Is there any information that its heritary?  Since I found out about Jenna alot of my symptoms growing up make sense now.  I used to get bad migranes in the sun,  and I lost all my teeth at 26 and was very sick during all 4 of my pregnancies, one was a full term stillborn baby boy.  Lately ive been tired all the time and I always have all this goop in my eyes,  and Ive been having really bad brain fog Im only 39 so I dont think I should be having that,   its almosit like im in outer space. lol 

[jonnell]

My the way how old is your daughter?  My son has high functioning autism he is 13 now but I know what thats like. 

[lilbitz]

Hey Jonnell my rheumy told me that autoimmune disorders are hereditary my mother has fibromyalgia and my grandmother has a type of autoimmune arthritis with psoriosis she said half of my family probally have SJS and just don't know it after reviewing my history.My mother grandmother and I have alot of symptoms that are the same but I am the only one that has suffered lack of tears.By the way my daughter is 7yrs old.Her therapist told me she is pretty positive she has Asperger's but she needs to do further testing before she is allowed to put that on paper the first test starts at a thousand dollars and they will not accept any health insurance it has to be paid for upfront crappy huh so I am trying to find resources through the state.She does great in school and is very artistic the main area of concern with her is more social and her behavior at home can be quite unberable for 2yrs she did not talk she could talk but just wouldn't she would talk alittle at home but nowhere else she had the same preschool teacher for 2yrs and never spoke one word to her or classmates thankfully she has come along way since then. I never put it together with autism until a few months ago now everything she does makes sense and I also tend to be more patient since I now know she can't help it.She also suffers from anxiety.What type does your son have?How does he manage at school and in social settings?My stress level is so high and sometimes I feel like I am not doing things the right way when it comes to her it doesn't help that dad never seems to agree with me on the subject.

[jonnell]

Michael has aspergers as well,  he has come a long way.  We got him into special education right from the start, he was in the preschool handicapped program.  But I had to fight like heck to get him the help he needed they kept passing him from grade to grade and he couldnt read.  I finally had enough and in when he was entering 6th grade he could only read at a first grade level so I demanding action or I was going to transfer him out of district to a school for kids with autism,  they would of had to pay for it so they got him a tutor he goes twice a week after school for a hour a day he is getting ready to go into 9th grade and he is ready at almost his level.  Michael had one interest that was the military which got him in some problems in school because he was always drawling tanks and guns and things and after Sept 11th that wasnt tolerated so the made a thing in his IEP for special education that he wasnt doing those things to act out it was part of the aspergers, he had now been classified as PDD  Pervasive Developmental Disorder and has come a long way socially, he still keeps to himself but is not as socially akward as he once was,  kids wouldnt talk to him because he fixated on one thing and would talk about nothing but the military.  He likes things to be structered and dont dare do anything without telling him,  he doesnt like to be around a lot of people, but he has come a long way, we are very proud of him.  He had a massive seizure at age 2andahalf (almost died) after receiving a hepatitis b vaccination with thimerosol in it which I believe triggered this whole thing,  he regressed in everything and had to learn everything over again.  They dont want to admit that thimerosol caused autism but they took it out of all vaccines(what does that tell U)  My ex husband thinks Michael is just spoiled so I know all about people trying to tell you what to do,  I knew Michael had problems and the best thing I did was advacate for him and get him the help he needed.   Now Im doing it all over again with Jenna and the sjs, but I am thankful she doesnt have the learning disabilities,  she is to smart for her own good.  You can come to my facebook page Jonnell Labas if you would like to talk more I also am trying to start a group for sjs.   Hugs and Kissess    Jonnell and Jenna

[jonnell]

Do you live in the United States,  the school can get those tests done for her and if you get her into special education they have to pay for them.