Re: Anyone have link to a picture of the Systemic rash? (really, really long)

[Guest guest]

Hello:

Thanks so much for the photographs. Now... after reading up on the systemic

form, I'm not sure whether I should be worried or not... ;0)

I'll just tell you what happened and you guys tell me what you think. Keep in

mind we have our 2 month checkup on Wednesday also.

Friday and for a few days earlier, Noah just hadn't been acting quite right. He

wasn't eating very well and it was taking alot of coaxing on my end for him to

eat. Eating was probably the only way he was exhibiting any symptoms that I

noticed until Friday...

Friday morning he didn't eat breakfast and we went and got his Methotrexate shot

(10 mg). Anyway, within a half hour after that he was acting really, really

tired and was laying down (we were shopping so he laid down in the shopping

cart). That was really odd. So... on the way home he could hardly keep awake

and was dozing. We get home and at this time I'm just thinking maybe he's extra

tired or something, not too big a deal, but he's got to go to school within the

next 1/2 hour. So... I sit down and proceed to try and coax him to eat lunch,

but he is having almost nothing to do with that. So... as the time goes by and

he's just not responding to me, mommy's intuition goes off and I call in and let

school know he's not coming. At this point, I've taken his temp and it's

normal...

Anyway, I let him do what he wants for awhile as I spend some time on the

computer. When I come back to check him out, he's dirty so I change his diaper.

While doing that I notice that he has an small odd red area (rashlike) around

his groin area... odd... So then I check the rest of his body and he's got a

rash on his back and his fore arms. This is all really odd as I usually don't

see a rash on him or have just never noticed...

I get panickly thinking maybe he's having some sort of reaction to the mtx and

call his doctor's (pediatrician) office, but they are all out to lunch. So... I

turn my attention back to him and I notice that he's just laying on our footrest

and not moving much at all. I go check him out and he's very lethargic and a

little bit warm. I check his temperature and it's somewhere around 100 or so...

a little warm, but I already have a call into the pediatrician's office. As he

seems so tired, I figure I will let him sleep in the living room with me and I

get him comfortable on a blanket and cover him up.

About 45 minutes pass or so and then he wakes up and vomits. I'm thinking,

great he has the flu... I take care of him and notice that his temperature has

shot up quite a bit - I take his temp and it's 104.2 (ear thermometer). I panic

and call the pediatrician's office and pretty much demand to talk to a nurse and

she gets us in pretty quickly (as they are worried about a reaction to the mtx I

think). Well, I had to use the stroller to get him in there as there's no way

he would walk and it's just too far for me to carry him. The doctor could take

one look at him and know something was up. She did find a ear infection (left

ear) and thought he might have a respiratory virus thing going on too, which

would account for the high fever (it was 102.5 at their office and they gave him

some Motrin). Also, at the doctor's office the rash had totally disappeared so

she couldn't see it, but had to just go on what I said.

Anyway, to make a long story much shorter, she prescribed an antibiotic and said

alternate Tylenol and Motrin and keep him cool, no blankets, little to no

clothing. As there was a problem with getting the prescription at the pharmacy,

we were in the car (air conditioned) much longer than I would have liked

(especially as Noah overheats easily). Noah kept dozing and was pretty

lethargic through most of it, but seemed to perk up a little bit at the end.

Finally, we get home and I notice that he has the same rash all over again, this

time it's on his upper arms and along his back. It was kind of weird that it

was all under his clothes and not anywhere else. I called back to the

pediatrician's office, but she didn't know what to make of it.

Noah got better very quick. By the morning, he just had a slight fever and I

did give him Motrin and Tylenol for that day off and on whenever I felt he

needed it. However, by the next day he was totally back to normal.

Some things which seemed odd to me was that if he had a viral infection, I don't

think it would have disappeared as quickly as it did - practically overnight. I

think his not wanting to eat was probably related to the ear infection - which

it is entirely possible that the fever was too, but I've never seen the rash

before that I know of. Sometimes, Noah's skin looks kind of splotchy, but I

just associated it to kind of poor circulation possibly related to his Down

Syndrome. Also, we've had a few questions in the past that his white blood cell

count seems to be elevated with no real reason behind it (his last blood test

from the rheumy came back that way and they were just going to make sure they

checked it again at this appointment).

Right now, he has a diagnosis of technically, pauci JRA, but borderline for poly

as he has four joints affected. When the second rash came back, I did take

digital pics of it so I'm going to take my camera to the rheumy and show her the

pictures so she knows what rash I'm talking about.

I guess what's bothering me is what I've been reading on the web as I was

looking for the rash pictures, some symptoms of the systemic version are high

fevers, rash, and elevated white blood cell count. The white blood cell count

elevations he's had for a while, but this rash and high fever is pretty new and

I'm hoping they don't come back.

Ok, any comments on this long... long... letter would be greatly appreciated.

Thanks so much.

Wife to Bruce

Mommy to - 6, Noah - 4, and Grace - 1

HOME AND GARDEN PARTY INDEPENDENT DESIGNER

Want to see a book? Just let me know

Click HERE to see my Ebay Auctions

OR

Look Under User ID " numom1 "

COMPLETE SURVEYS FOR CASH

Email Me For Referral Links

Re: Anyone have link to a picture of the Systemic rash?

,

Here are a couple links. You can also go to the web site and some of the kids

pictures with the rash are there.

e

http://medicine.ucsd.edu/peds/Pediatric%20Links/Links/Rheumatology/Juvenile%20Rh\

eumatoid%20Arthritis%20Peds%20in%20Review%20Oct%201997.htm

http://www.musc.edu/pedres/PowerPointPresentations/WEB_VERSION_PPT_PRESENTATIONS\

/Juvenile_Rheumatoid_Arthritis/sld028.htm

This site has quite a few pics

http://www.stillsdisease.org/rash_photos.htm

Biggers <numom93097@...> wrote:

Hi Everyone:

I'm looking for a link to a picture of the systemic rash. Noah has had some

pretty odd symptoms and I'm wondering about this so I would love to see a

picture of this rash. Thanks so much.

Wife to Bruce

Mommy to - 6, Noah - 4, and Grace - 1

HOME AND GARDEN PARTY INDEPENDENT DESIGNER

Want to see a book? Just let me know

Click HERE to see my Ebay Auctions

OR

Look Under User ID " numom1 "

COMPLETE SURVEYS FOR CASH

Email Me For Referral Links

[Guest guest]

Dear , You did the right thing by taking pictures. With systemic,

the rash and fevers can come and go so quick that it is hard to diagnose.

Every time n had the rash and fever, they would be gone by the time we

got her to the pediatrician. We found that the fevers just went away on

their own, nothing touched them. Sometimes it seemed like they were being

controlled by tylenol and advil, but looking back I don't think they were.

It soiunds like you have good instincts, and I say , " Go with your gut. " You

know your child best, and keep fighting for him and don't always take the

doctors' answers if they seem off of the mark. Most pediatricians haven't

even seen a systemic child before. Good luck. (n, 15, sytemic)

Re: Anyone have link to a picture of the Systemic rash?

>

>

> ,

>

> Here are a couple links. You can also go to the web site and some of the

kids pictures with the rash are there.

>

> e

>

>

http://medicine.ucsd.edu/peds/Pediatric%20Links/Links/Rheumatology/Juvenile%20Rh\

eumatoid%20Arthritis%20Peds%20in%20Review%20Oct%201997.htm

>

>

http://www.musc.edu/pedres/PowerPointPresentations/WEB_VERSION_PPT_PRESENTATIONS\

/Juvenile_Rheumatoid_Arthritis/sld028.htm

>

> This site has quite a few pics

> http://www.stillsdisease.org/rash_photos.htm

> Biggers <numom93097@...> wrote:

> Hi Everyone:

>

> I'm looking for a link to a picture of the systemic rash. Noah has had

some pretty odd symptoms and I'm wondering about this so I would love to see

a picture of this rash. Thanks so much.

>

>

> Wife to Bruce

> Mommy to - 6, Noah - 4, and Grace - 1

> HOME AND GARDEN PARTY INDEPENDENT DESIGNER

> Want to see a book? Just let me know

>

> Click HERE to see my Ebay Auctions

> OR

> Look Under User ID " numom1 "

>

>

> COMPLETE SURVEYS FOR CASH

> Email Me For Referral Links

>

>

>

>

[Guest guest]

, One thing rang out to me, and that was his meds. With mtx, he should

not be taking ibuprophin. . .only acetaminaphin. Advil and Motrin are

NSAIDs, as is the mtx. The drowsiness and lack of desire to eat can also be

attributed to the mtx. All that said, I would be concerned about the rash.

It's behavior, if nothing else, rings alarm bells to me. I hope he feels

better soon.

Christy (Abbie, 15 systemic)

Re: Anyone have link to a picture of the Systemic rash?

>

>

> ,

>

> Here are a couple links. You can also go to the web site and some of the

kids pictures with the rash are there.

>

> e

>

>

http://medicine.ucsd.edu/peds/Pediatric%20Links/Links/Rheumatology/Juvenile%20Rh\

eumatoid%20Arthritis%20Peds%20in%20Review%20Oct%201997.htm

>

>

http://www.musc.edu/pedres/PowerPointPresentations/WEB_VERSION_PPT_PRESENTATIONS\

/Juvenile_Rheumatoid_Arthritis/sld028.htm

>

> This site has quite a few pics

> http://www.stillsdisease.org/rash_photos.htm

> Biggers <numom93097@...> wrote:

> Hi Everyone:

>

> I'm looking for a link to a picture of the systemic rash. Noah has had

some pretty odd symptoms and I'm wondering about this so I would love to see

a picture of this rash. Thanks so much.

>

>

> Wife to Bruce

> Mommy to - 6, Noah - 4, and Grace - 1

> HOME AND GARDEN PARTY INDEPENDENT DESIGNER

> Want to see a book? Just let me know

>

> Click HERE to see my Ebay Auctions

> OR

> Look Under User ID " numom1 "

>

>

> COMPLETE SURVEYS FOR CASH

> Email Me For Referral Links

>

>

>

>

[Guest guest]

Christy, I think you are mistaken. Mtx is a dmard, so any

anti-inflammatory can be used with it. You can't use advil and motrin

together, because they are one in the same. You can alternate tylenol and

advil or motrin though. (n, 15, systemic)

Re: Anyone have link to a picture of the Systemic rash?

> >

> >

> > ,

> >

> > Here are a couple links. You can also go to the web site and some of

the

> kids pictures with the rash are there.

> >

> > e

> >

> >

>

http://medicine.ucsd.edu/peds/Pediatric%20Links/Links/Rheumatology/Juvenile%20Rh\

eumatoid%20Arthritis%20Peds%20in%20Review%20Oct%201997.htm

> >

> >

>

http://www.musc.edu/pedres/PowerPointPresentations/WEB_VERSION_PPT_PRESENTATIONS\

/Juvenile_Rheumatoid_Arthritis/sld028.htm

> >

> > This site has quite a few pics

> > http://www.stillsdisease.org/rash_photos.htm

> > Biggers <numom93097@...> wrote:

> > Hi Everyone:

> >

> > I'm looking for a link to a picture of the systemic rash. Noah has

had

> some pretty odd symptoms and I'm wondering about this so I would love to

see

> a picture of this rash. Thanks so much.

> >

> >

> > Wife to Bruce

> > Mommy to - 6, Noah - 4, and Grace - 1

> > HOME AND GARDEN PARTY INDEPENDENT DESIGNER

> > Want to see a book? Just let me know

> >

> > Click HERE to see my Ebay Auctions

> > OR

> > Look Under User ID " numom1 "

> >

> >

> > COMPLETE SURVEYS FOR CASH

> > Email Me For Referral Links

> >

> >

> >

> >