/stills rash

[Guest guest]

Hi Georgina,

I was in such denial.I tried to think of anything and everything that might have caused this rash.This is the worse it has been since before dianoses.No huge welts or hives but alot on his thighs,lower tummy,fingers,toes,armpits.It does seem lighter today with the exception of the bright red ones on his thighs.Luckily we see the rheumy 7-30 unless things get worse.Labs in the morning to see if they show anything bad.I don't think anything will be tapered this time around but I also know the pred will be a last resort unless he starts the fevers and even then I don't know.As much as we think we know and joke around about knowing more then the doctors they are the ones with the degrees and deal with this everyday and have for years.I know they try to avoid it all costs and sometimes it is a mistake and other times things resolve on there own.I guess thats what makes this disease so frustraiting.You just have no idea on whats going to happen.I hope Josh's rash resolves and doesn't turn into anything more.He is so close to being off.I am going to try and stay optimistic like you are being.I think I will be ok when the initial shock wears off.

Hugs

Becki and 4systemic

[Guest guest]

Hi Becki,

I know exactly how you feel. Strangely enough, we've had the same thing happen

over here. In the past 3 weeks has had that familiar looking 'rash'

four, maybe five, times. Instead of appearing on his chest, upper arms, and

thighs ... where it used to be whenever he wasn't well ... it's been confined

just to both of his thighs. It's exactly the same as it used to be, a sort

of mottled pink pattern like what you'd see on camouflage clothing. We both

puzzled over it. Were very surprised to see it again, in the absence of increased

joint swelling. Fortunately, there hasn't been any other craziness to go

along with it. I did mention it to the nurse but she didn't seem alarmed.

So, unless other things start happening, we're going to just try to relax

about it. The first time he showed it to me, alarm bells rang. "No! Couldn't

be. Must be something else. Are you sure?!?" Then I saw for myself. Despair

isn't quite the right word but I did feel a bit worried. After we've finally

gotten our hopes up again, here comes trouble.

Let's see what happens, how everything goes. Hopefully it's not a major big

deal.

Take Care,

Georgina

Arthurnator@... wrote:

Hi gang,

Well has not outgrown the systemic part of his disease.After 15 months

the rash decided to make an appearance beginning yesterday morning.Rheumy

is not too concerned because Dave has no fever and joint wise is still 100%.Many

kids keep a rash with no other symptoms but that really doesn't ease my mind

any.All we can do is keep an eye on him and hope this doesn't manifest into

a full flare.He looks so great being skinny again.Not even the pred scares

me as much as having to see him in pain and being helpless.Dad and I have

shed many tears but have to stop. feels great and we are scaring him.He

kind of understands but not really.He knows he has arthur but doesn't remember

it or the pain,he just knows he has to take 3 shots a week and a little vitamin(foic

acid)every day.If this does turn into the real deal atleast he has had almost

a full year pain free.

Love and Hugs

Becki and 4systemic

[Guest guest]

Becky-

My fingers are crossed that nothing more materializes. Try not to panic too much. I was surprised to hear you say doesn't recall any specific pain when he had such major problems. too knows she has arthritis and has to take medicine, but when asked if she remembers when she was hurting, she's a bit vague. She remembers doing exercises, but I don't know if she remembers pain. Which is good. But in a way, if the arthritis flares up again, it's almost like you're starting all over -- such a shock for a child to go from feeling great to feeling awful. I hope that doesn't happen to . But even if it does, try to believe that you've managed a remission for a year now, and it'll happen again.:-)

Diane (, 4, pauci)

[Guest guest]

-Becki,

Sorry to read that s rash has re-appeared. It must be a

worrying time for you. I will continue to keep you and in my

prayers and hope that this is just an isolated, short lived incident

and nothing becomes of it. Which Im sure it wont ( positive thinking

here ))))

It easy to worry, I know when Nick suddenly complained of hip pain

after throwing up 2 doses of his med, it hit me like a ton of

bricks.. It was such a non event, but after seeing him doing so well

its a shock. I think it brings us back to reality as to what we are

dealing with.

hugs to you and

Helen and (5, systemic)

-- In , Arthurnator@w... wrote:

> Hi gang,

> Well has not outgrown the systemic part of his disease.After

15 months

> the rash decided to make an appearance beginning yesterday

morning.Rheumy is

> not too concerned because Dave has no fever and joint wise is

still 100%.Many

> kids keep a rash with no other symptoms but that really doesn't

ease my mind

> any.All we can do is keep an eye on him and hope this doesn't

manifest into a

> full flare.He looks so great being skinny again.Not even the pred

scares me as

> much as having to see him in pain and being helpless.Dad and I

have shed many

> tears but have to stop. feels great and we are scaring him.He

kind of

> understands but not really.He knows he has arthur but doesn't

remember it or the

> pain,he just knows he has to take 3 shots a week and a little

vitamin(foic

> acid)every day.If this does turn into the real deal atleast he has

had almost a

> full year pain free.

> Love and Hugs

> Becki and 4systemic

[Guest guest]

Hi ,

Don't know much about kids getting shingles.I have always heard of adults getting it as a result of chicken pox as a child when they are older.This darn disease is so unpredictable anything is possible,I guess.Our rheumy is not worried at all about the rash appearing without fever or joint symptoms.It basically just means more medicated remission and definately no clinical remission(my theory)which is quite obviuous.Our ped rheumies at Vandebilt in Nashville consist of 2 rheumies holding clinic on Mondays and Wendeys.I called Sat and Sun and they called me back both times within 5 minuites,Any questions or concerns call them and just talk about what is bothering you.Leave questions for clinic days and panic things for off days.Any time you are truely worried call.

Hugs

Becki and 4systemic

[Guest guest]

Hi Diane,

I undestood exactly what you said. knows he is getting 3 shots a week because of Arthur but has forgotten the pain and fatigue and all the other nasty things that go along with it.He is just as happy and playfull as any other child that is disease free.That is the ONLY thing that keeps him from forgetting.I know is Paucie so you don't really understand the rash just like I can't really understand the eye trouble.So it would kind of be comparable to s eyes being affected with no joint trouble and Dave getting the stills rash and no fever or joint trouble.All seems to be fine.He went swimming this afternoon so I could see the rash more clearly.The weard thing is instead of being BRIGHT red or (classic pale pink)its tan colored.All I can think of was the rheumy was wright and 3 weeks ago Dave had the worst infection on top of infection that he has ever had.Immune systeme despite antibiotics got stressed out.

How is the gymnastics going for ? has a big interest in it and wants to tumble and flip also.

Love and hugs Becki and 4systemic

[Guest guest]

Becki-

Maybe just a heat rash or allergy to sun lotion?? I'll hope it's something simple like that. Or if it is the stills rash, maybe the joints won't flare? is still loving the gymnastics and having absolutely no problems with her joints :- ) I'll bet would have fun with something like that. My other daughter is so serious about gymnastics. isn't -- she just likes to jump around and do her own thing. tends to march to her own drum :-)

Diane (, 4, pauci)

[Guest guest]

Hi all,

s rash is down to just a few very pale pink spots.He had labs done yesterday and I just picked them up they are perfect,actualy they have never been this great.He still hasn't had a fever or joint symptoms so optomistic this was just a short lived thing most likely triggered by the fact he had the worst infections he had ever had 3 weeks ago.This is wild,the only thing that was abnormal was his SGPT but it wasn't high it was low and I had already given the rheumy a heads up that due to MTX Sat night they would probably come back elevated.Go figure.Hope all is well.

Hugs

Becki and 4systemic

[Guest guest]

Great news, Becki!

Diane (, 4, pauci)

[Guest guest]

--Becki,

Im so glad to read that s Labs are all great and the rash is

clearing.

lets hope this is the end of this episode. ))))

hugs Helen and ( systemic, 5)

- In , Arthurnator@w... wrote:

> Hi all,

> s rash is down to just a few very pale pink spots.He had labs

done

> yesterday and I just picked them up they are perfect,actualy they

have never been

> this great.He still hasn't had a fever or joint symptoms so

optomistic this was

> just a short lived thing most likely triggered by the fact he had

the worst

> infections he had ever had 3 weeks ago.This is wild,the only thing

that was

> abnormal was his SGPT but it wasn't high it was low and I had

already given the

> rheumy a heads up that due to MTX Sat night they would probably

come back

> elevated.Go figure.Hope all is well.

> Hugs

> Becki and 4systemic

[Guest guest]

Hi Becki,

So glad to hear that all is well. I know how worrisome it can be to see

something you're not expecting just pop up out of the blue like that. What

a relief! Let's hope that everything remains stable in the near future.

Take Care,

Georgina

Arthurnator@... wrote:

Hi all,

s rash is down to just a few very pale pink spots.He had labs done

yesterday and I just picked them up they are perfect,actualy they have never

been this great.He still hasn't had a fever or joint symptoms so optomistic

this was just a short lived thing most likely triggered by the fact he had

the worst infections he had ever had 3 weeks ago.This is wild,the only thing

that was abnormal was his SGPT but it wasn't high it was low and I had already

given the rheumy a heads up that due to MTX Sat night they would probably

come back elevated.Go figure.Hope all is well.

Hugs

Becki and 4systemic

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[Guest guest]

Hi Diane,

Josh, too, seems to have blocked out memories of the very worst periods of

illness. I always figured it was because he had very high fevers and seemed

to be in and out of a deep sleep state during the worst flares ... maybe

because when he was able to sleep the pain wasn't as bad ... but maybe it's

more than that. Maybe it's something like the phenomenon of remembering the

birthing experience but forgetting the exactness of the pain that was involved

during the experience? I'm glad doesn't really remember the worst

of it. He'll talk, sometimes, about how he was screaming and crying when

they tried to move his legs and arms and he'll mention how scary and painful

it was when he had his spinal taps done, and how worried he was about going

into the tunnel for the noisy CAT scan ... but I think it's more remembering

the discussions about it rather than the painful experience itself. Hard

to explain. For me, it seemed like he was nearly out of consciousness for

most of the worst. The fevers had him in a sort of dream state and he never

seemed 'fully awake' and aware, at least before he was hospitalized and treatment

started. That's why I was so worried. He seemed to be drifting, like he was

somewhere else, not 'with it' ... and he had always been so focused and aware

before that. Even as an infant. Fortunately, he snapped out of it afterwards!

Except for those periods during really bad flares. At those times, even in

the middle of the night I'd find myself waking every couple hours just to

make sure he was still okay.

Ah, well. I'm just so happy that those days seem behind us now.

Take Care,

Georgina

dbornscheu@... wrote:

Becky-

My fingers are crossed that nothing more materializes. Try not to panic

too much. I was surprised to hear you say doesn't recall any specific

pain when he had such major problems. too knows she has arthritis

and has to take medicine, but when asked if she remembers when she was hurting,

she's a bit vague. She remembers doing exercises, but I don't know if she

remembers pain. Which is good. But in a way, if the arthritis flares up

again, it's almost like you're starting all over -- such a shock for a child

to go from feeling great to feeling awful. I hope that doesn't happen to

. But even if it does, try to believe that you've managed a remission

for a year now, and it'll happen again.:-)

Diane (, 4, pauci)