Re: UPDATE ON CALEB

[Guest guest]

What does the rash look like? When our Hunter first got sick she didn't

have the rash until right before the arthritis set in. But she did have fever

every day about the same time. She also had night sweats at night time - we

would have to change out her clothes and sheets. When she had fever was the

worst - she would hurt all over. Have they done a bone scan yet or mri?

Hunter's mri showed the swollen lymph nodes and the fluid build up on her

joints as well as a rare cyst in her arm that is associated with systemics.

Even

with all that we had to see an surgeon (who deals mainly with oncology

patients) to do two biopies. After they ruled out any type of cancer or blood

disease as well as a host of other diseases we finally began drug therapy for

JRA. She responded immediately and the symptoms began to subside. I hope that

Caleb gets to feeling better really soon. Our doctor is at Emory University,

Atlanta GA - Dr. Larry Vogler. . Keep us updated - if you have any

questions just post. Lot of people here with experience and understanding.

Sandi

Ken Hunter (9 Systemic)

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

When Hunter is flaring - she gets a mottled rash - on arms and legs so on

her trunk. It was a reddish/purplish - almost like you could see her blood

vessels - I think our Rheumy stated it was some type of vascular ???. They even

tested her for Lupus. It used to scare me. Now when I see it - is an

inidicator that something isn't right - maybe her medicine needs tweeking or a

virus lurking in the balance. She would usually get it when she was feverish.

Her systemic rash was totally different - very light, one minute you could see

it and then it was gone. Her systemic rash was on the palms of her hand and

her feet. Now when she flares it is on her upper legs. Things do change

quickly if it is systemic. Our Hunter was running around the yard in the

beginning of March 2004 and in three weeks was in a wheelchair with her knees so

swollen. Sandi Ken Hunter (9 Systemic)

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

his rash is a mottled looking rash and when the fever is high it almost looks

like a road map where you can just take sections out very hard to explain

rashes. red in the areas that look like maping The Dr chacterized it as a

vascular looking rash but wasnt sure what to think of it but it was deff a rash!

And maybe that it is just his rash that everyone is not the same but he needed

to be sure. I do feel much better that we are starting something finally after

9 long weeks. We had a bone scan but it was over a month ago. Funny you

mentioned this our rheumy mentioned tonight that it may be time to start

thinking about another bone scan that things can change pretty quickly

espicially when they are active ?? not really sure what he meant by active, but

i know that he knows his stuff. no MRI yet but had a worthless CT last week not

sure what the real point of it was they didnt sedate him so I am not sure that

they got things as accurately as they could of I think that a

good old fashioned MRI would be the best diagnostic tool for Caleb.

deerhuntert6@... wrote: What does the rash look like? When our

Hunter first got sick she didn't

have the rash until right before the arthritis set in. But she did have fever

every day about the same time. She also had night sweats at night time - we

would have to change out her clothes and sheets. When she had fever was the

worst - she would hurt all over. Have they done a bone scan yet or mri?

Hunter's mri showed the swollen lymph nodes and the fluid build up on her

joints as well as a rare cyst in her arm that is associated with systemics. Even

with all that we had to see an surgeon (who deals mainly with oncology

patients) to do two biopies. After they ruled out any type of cancer or blood

disease as well as a host of other diseases we finally began drug therapy for

JRA. She responded immediately and the symptoms began to subside. I hope that

Caleb gets to feeling better really soon. Our doctor is at Emory University,

Atlanta GA - Dr. Larry Vogler. . Keep us updated - if you have any

questions just post. Lot of people here with experience and understanding. Sandi

Ken Hunter (9 Systemic)

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

I'm so glad that you got him in, especially in a flare.

Our rheumy we had previous to Dr. Passo would never have done that for us. He'd

have sent us to the ER.

Keep us posted on how Caleb is doing.

and Rob 18 JAS

UPDATE ON CALEB

> Well since I was last on here our rheumy had called back and

> wanted

> us to give Caleb a warm bath and another dose of mortin, and

> call

> back in 1 hour with report. Well we did that and his pain

> went from

> 10 to 9 and he still could not walk and was c/o headache and

> multiple joint pains. When I talked to the nurse for like

> the 4th

> time she was like well we think he will be ok and just come in

> on

> wed for an appt. I was like ok how do you know even you

> dont even

> know what his dx is and when is things too bad and he needs to

> go to

> the ED. We talked for about 1/2 hour and she was like if

> you think

> that he needs to go to ED then by all means take him, but from

> what

> you have told us we think he is going to be ok.....I am a nurse

> as

> you can see by my screen name I was thinking to myself if I

> would of

> just told a parent that I would of had to kick myself first of

> all

> we do not know for sure what we are dealing with so how do we

> know

> if this is *typical* of his condition...We hung up and left it

> at me

> and my husband were going to discuss the ED but we will see them

> at

> the clinic on wed. Well about 1 hour later my phone rang

> and it was

> DR Passo he wanted to know what I thought and my opinion on how

> he

> looks since I was the one here with Caleb. And after him

> listening

> to my story of sx he said well I have been done seeing pts for

> about

> an hour now but how long will it take you to get here I

> told him a

> little over an hour He said ok come on and come into the clinic

> and

> we will see him tonight but keep in mind we are here waiting on

> him

> we have no other pts at this time. I think that was a ok come on

> but

> hurry! We met my husband in a town on the way and went to

> see our

> rheumy Caleb for once had a temp and they could see that he was

> very

> sick but a littlw through the visit he perked up alot but our

> rheumy

> seems to bring that out in people. LOL He started him on

> naprosyn

> to help quiet he sx for now. He also did x rays and blood

> work. I

> seen that they had called us before we got home but didnt leave

> a

> message, that worries me. I thought no time like the

> present so

> when I was at the appt I asked the rheumy what is holding us up

> on a

> dx he said he rash isnt the classic JIA rash and we really

> havent

> seen true arthraliga because he is usually feeling ok when he is

> there. But today he had some artheralgia but he wasnt sure

> if it

> was true arth. or something brewing so he wasnt ready to rule on

> that tonight but did say that everything else screams JIA but

> its

> just those 2 things that are holding us up but he thinks that in

> time these will show through that is what we are waiting on and

> the

> xrays should tell us more.

>

>

>

[Guest guest]

he started off not walking again this am but by afternoon was walking some. We

started him on his new med it can take up to 4 weeks to see a response. I do

know one thing he sure is very irritable. He is crying at the littlest thing

and just plain unhappy, i guess this is probably underlying pain not sure but oh

my! He went to bed at about 6pm and is still there I hope that he is sleeping

off his grumpyness. Was your child like this being very irritable?

snooksmama@... wrote:

I'm so glad that you got him in, especially in a flare.

Our rheumy we had previous to Dr. Passo would never have done that for us. He'd

have sent us to the ER.

Keep us posted on how Caleb is doing.

and Rob 18 JAS

UPDATE ON CALEB

> Well since I was last on here our rheumy had called back and

> wanted

> us to give Caleb a warm bath and another dose of mortin, and

> call

> back in 1 hour with report. Well we did that and his pain

> went from

> 10 to 9 and he still could not walk and was c/o headache and

> multiple joint pains. When I talked to the nurse for like

> the 4th

> time she was like well we think he will be ok and just come in

> on

> wed for an appt. I was like ok how do you know even you

> dont even

> know what his dx is and when is things too bad and he needs to

> go to

> the ED. We talked for about 1/2 hour and she was like if

> you think

> that he needs to go to ED then by all means take him, but from

> what

> you have told us we think he is going to be ok.....I am a nurse

> as

> you can see by my screen name I was thinking to myself if I

> would of

> just told a parent that I would of had to kick myself first of

> all

> we do not know for sure what we are dealing with so how do we

> know

> if this is *typical* of his condition...We hung up and left it

> at me

> and my husband were going to discuss the ED but we will see them

> at

> the clinic on wed. Well about 1 hour later my phone rang

> and it was

> DR Passo he wanted to know what I thought and my opinion on how

> he

> looks since I was the one here with Caleb. And after him

> listening

> to my story of sx he said well I have been done seeing pts for

> about

> an hour now but how long will it take you to get here I

> told him a

> little over an hour He said ok come on and come into the clinic

> and

> we will see him tonight but keep in mind we are here waiting on

> him

> we have no other pts at this time. I think that was a ok come on

> but

> hurry! We met my husband in a town on the way and went to

> see our

> rheumy Caleb for once had a temp and they could see that he was

> very

> sick but a littlw through the visit he perked up alot but our

> rheumy

> seems to bring that out in people. LOL He started him on

> naprosyn

> to help quiet he sx for now. He also did x rays and blood

> work. I

> seen that they had called us before we got home but didnt leave

> a

> message, that worries me. I thought no time like the

> present so

> when I was at the appt I asked the rheumy what is holding us up

> on a

> dx he said he rash isnt the classic JIA rash and we really

> havent

> seen true arthraliga because he is usually feeling ok when he is

> there. But today he had some artheralgia but he wasnt sure

> if it

> was true arth. or something brewing so he wasnt ready to rule on

> that tonight but did say that everything else screams JIA but

> its

> just those 2 things that are holding us up but he thinks that in

> time these will show through that is what we are waiting on and

> the

> xrays should tell us more.

>

>

>

[Guest guest]

I know I'm jumping in here so pardon, but yes indeed that constant

pain will make them grumpy and totally not themself. Isabelle was

just 2 yrs. so I thought it was " the terrible two's " setting in

before we knew what was happening. She cried so much and it broke my

heart. I carried her every day until around 3 p.m. for about 9

months since she couldn't walk either. It's hard as a mom. I hope

the Naproxen kicks in fast for Caleb; he so deserves some relief...

Hugs to you both, Hadley

> I'm so glad that you got him in, especially in a flare.

> Our rheumy we had previous to Dr. Passo would never have done that

for us. He'd have sent us to the ER.

> Keep us posted on how Caleb is doing.

> and Rob 18 JAS

>

> UPDATE ON CALEB

>

>

> > Well since I was last on here our rheumy had called back and

> > wanted

> > us to give Caleb a warm bath and another dose of mortin, and

> > call

> > back in 1 hour with report. Well we did that and his pain

> > went from

> > 10 to 9 and he still could not walk and was c/o headache and

> > multiple joint pains. When I talked to the nurse for like

> > the 4th

> > time she was like well we think he will be ok and just come in

> > on

> > wed for an appt. I was like ok how do you know even you

> > dont even

> > know what his dx is and when is things too bad and he needs to

> > go to

> > the ED. We talked for about 1/2 hour and she was like if

> > you think

> > that he needs to go to ED then by all means take him, but from

> > what

> > you have told us we think he is going to be ok.....I am a nurse

> > as

> > you can see by my screen name I was thinking to myself if I

> > would of

> > just told a parent that I would of had to kick myself first of

> > all

> > we do not know for sure what we are dealing with so how do we

> > know

> > if this is *typical* of his condition...We hung up and left it

> > at me

> > and my husband were going to discuss the ED but we will see them

> > at

> > the clinic on wed. Well about 1 hour later my phone rang

> > and it was

> > DR Passo he wanted to know what I thought and my opinion on how

> > he

> > looks since I was the one here with Caleb. And after him

> > listening

> > to my story of sx he said well I have been done seeing pts for

> > about

> > an hour now but how long will it take you to get here I

> > told him a

> > little over an hour He said ok come on and come into the clinic

> > and

> > we will see him tonight but keep in mind we are here waiting on

> > him

> > we have no other pts at this time. I think that was a ok come on

> > but

> > hurry! We met my husband in a town on the way and went to

> > see our

> > rheumy Caleb for once had a temp and they could see that he was

> > very

> > sick but a littlw through the visit he perked up alot but our

> > rheumy

> > seems to bring that out in people. LOL He started him on

> > naprosyn

> > to help quiet he sx for now. He also did x rays and blood

> > work. I

> > seen that they had called us before we got home but didnt leave

> > a

> > message, that worries me. I thought no time like the

> > present so

> > when I was at the appt I asked the rheumy what is holding us up

> > on a

> > dx he said he rash isnt the classic JIA rash and we really

> > havent

> > seen true arthraliga because he is usually feeling ok when he is

> > there. But today he had some artheralgia but he wasnt sure

> > if it

> > was true arth. or something brewing so he wasnt ready to rule on

> > that tonight but did say that everything else screams JIA but

> > its

> > just those 2 things that are holding us up but he thinks that in

> > time these will show through that is what we are waiting on and

> > the

> > xrays should tell us more.

> >

> >

> >

>

>

[Guest guest]

thanks for the reply, I was to the point of meltdown LOL. He was really bad on

Monday and the first half of yesterday and couldnt even walk but a little

afternoon yesterday he finally started to walk some but his was just a big

grump. As far as him not walking it was like he was soooo sick and couldnt walk

then someone turned on a light switch and he started walking is this normal

where things just come and go as quickly as they come? He did have a pattern

splotchy rash this afternoon much like I have seen in pictures I tried to get

pictures but the lighting was poor so they really didnt come out well. they

areas almost had a purple tent to them as I have seen in many of the pictures

that i have seen doing my research!

hadley_messner <hmessner@...> wrote: I know I'm jumping in here

so pardon, but yes indeed that constant

pain will make them grumpy and totally not themself. Isabelle was

just 2 yrs. so I thought it was " the terrible two's " setting in

before we knew what was happening. She cried so much and it broke my

heart. I carried her every day until around 3 p.m. for about 9

months since she couldn't walk either. It's hard as a mom. I hope

the Naproxen kicks in fast for Caleb; he so deserves some relief...

Hugs to you both, Hadley

> I'm so glad that you got him in, especially in a flare.

> Our rheumy we had previous to Dr. Passo would never have done that

for us. He'd have sent us to the ER.

> Keep us posted on how Caleb is doing.

> and Rob 18 JAS

>

> UPDATE ON CALEB

>

>

> > Well since I was last on here our rheumy had called back and

> > wanted

> > us to give Caleb a warm bath and another dose of mortin, and

> > call

> > back in 1 hour with report. Well we did that and his pain

> > went from

> > 10 to 9 and he still could not walk and was c/o headache and

> > multiple joint pains. When I talked to the nurse for like

> > the 4th

> > time she was like well we think he will be ok and just come in

> > on

> > wed for an appt. I was like ok how do you know even you

> > dont even

> > know what his dx is and when is things too bad and he needs to

> > go to

> > the ED. We talked for about 1/2 hour and she was like if

> > you think

> > that he needs to go to ED then by all means take him, but from

> > what

> > you have told us we think he is going to be ok.....I am a nurse

> > as

> > you can see by my screen name I was thinking to myself if I

> > would of

> > just told a parent that I would of had to kick myself first of

> > all

> > we do not know for sure what we are dealing with so how do we

> > know

> > if this is *typical* of his condition...We hung up and left it

> > at me

> > and my husband were going to discuss the ED but we will see them

> > at

> > the clinic on wed. Well about 1 hour later my phone rang

> > and it was

> > DR Passo he wanted to know what I thought and my opinion on how

> > he

> > looks since I was the one here with Caleb. And after him

> > listening

> > to my story of sx he said well I have been done seeing pts for

> > about

> > an hour now but how long will it take you to get here I

> > told him a

> > little over an hour He said ok come on and come into the clinic

> > and

> > we will see him tonight but keep in mind we are here waiting on

> > him

> > we have no other pts at this time. I think that was a ok come on

> > but

> > hurry! We met my husband in a town on the way and went to

> > see our

> > rheumy Caleb for once had a temp and they could see that he was

> > very

> > sick but a littlw through the visit he perked up alot but our

> > rheumy

> > seems to bring that out in people. LOL He started him on

> > naprosyn

> > to help quiet he sx for now. He also did x rays and blood

> > work. I

> > seen that they had called us before we got home but didnt leave

> > a

> > message, that worries me. I thought no time like the

> > present so

> > when I was at the appt I asked the rheumy what is holding us up

> > on a

> > dx he said he rash isnt the classic JIA rash and we really

> > havent

> > seen true arthraliga because he is usually feeling ok when he is

> > there. But today he had some artheralgia but he wasnt sure

> > if it

> > was true arth. or something brewing so he wasnt ready to rule on

> > that tonight but did say that everything else screams JIA but

> > its

> > just those 2 things that are holding us up but he thinks that in

> > time these will show through that is what we are waiting on and

> > the

> > xrays should tell us more.

> >

> >

> >

>

>

[Guest guest]

:

If you do get good pictures you can email them to Dr. Passo

Murray.Passo@...

and he will take a look

Hope this helps

and Rob 18 JAS

UPDATE ON CALEB

> >

> >

> > > Well since I was last on here our rheumy had called back and

> > > wanted

> > > us to give Caleb a warm bath and another dose of mortin, and

> > > call

> > > back in 1 hour with report. Well we did that and his pain

> > > went from

> > > 10 to 9 and he still could not walk and was c/o headache and

> > > multiple joint pains. When I talked to the nurse for like

> > > the 4th

> > > time she was like well we think he will be ok and just come

> in

> > > on

> > > wed for an appt. I was like ok how do you know even you

> > > dont even

> > > know what his dx is and when is things too bad and he needs

> to

> > > go to

> > > the ED. We talked for about 1/2 hour and she was like if

> > > you think

> > > that he needs to go to ED then by all means take him, but

> from

> > > what

> > > you have told us we think he is going to be ok.....I am a

> nurse

> > > as

> > > you can see by my screen name I was thinking to myself if I

> > > would of

> > > just told a parent that I would of had to kick myself first

> of

> > > all

> > > we do not know for sure what we are dealing with so how do

> we

> > > know

> > > if this is *typical* of his condition...We hung up and left

> it

> > > at me

> > > and my husband were going to discuss the ED but we will see

> them

> > > at

> > > the clinic on wed. Well about 1 hour later my phone rang

> > > and it was

> > > DR Passo he wanted to know what I thought and my opinion on

> how

> > > he

> > > looks since I was the one here with Caleb. And after him

> > > listening

> > > to my story of sx he said well I have been done seeing pts

> for

> > > about

> > > an hour now but how long will it take you to get here I

> > > told him a

> > > little over an hour He said ok come on and come into the

> clinic

> > > and

> > > we will see him tonight but keep in mind we are here waiting

> on

> > > him

> > > we have no other pts at this time. I think that was a ok

> come on

> > > but

> > > hurry! We met my husband in a town on the way and went to

> > > see our

> > > rheumy Caleb for once had a temp and they could see that he

> was

> > > very

> > > sick but a littlw through the visit he perked up alot but

> our

> > > rheumy

> > > seems to bring that out in people. LOL He started him on

> > > naprosyn

> > > to help quiet he sx for now. He also did x rays and blood

> > > work. I

> > > seen that they had called us before we got home but didnt

> leave

> > > a

> > > message, that worries me. I thought no time like the

> > > present so

> > > when I was at the appt I asked the rheumy what is holding us

> up

> > > on a

> > > dx he said he rash isnt the classic JIA rash and we really

> > > havent

> > > seen true arthraliga because he is usually feeling ok when

> he is

> > > there. But today he had some artheralgia but he wasnt sure

> > > if it

> > > was true arth. or something brewing so he wasnt ready to

> rule on

> > > that tonight but did say that everything else screams JIA

> but

> > > its

> > > just those 2 things that are holding us up but he thinks

> that in

> > > time these will show through that is what we are waiting on

> and

> > > the

> > > xrays should tell us more.

> > >

> > >

> > >

> >

> >

[Guest guest]

Yes, it IS like someone switches on a light and they are suddenly

ok. Isabelle was miserable first thing in the morning, of course,

and then following naptime. But by 3:00 p.m. I was seeing a

completely different child! She has poly JRA, so we only had one

episode of the rash and I agree, it was purple-red in color. The

funny thing for us was that it was across her bumm and thigh and I

kept putting Desitin on it Because this was before she had any other

symptoms. I still laugh over that one -- two weeks and that Desitin

didn't do a thing lol!

I know I'm jumping in

here so pardon, but yes indeed that constant

> pain will make them grumpy and totally not themself. Isabelle was

> just 2 yrs. so I thought it was " the terrible two's " setting in

> before we knew what was happening. She cried so much and it broke

my

> heart. I carried her every day until around 3 p.m. for about 9

> months since she couldn't walk either. It's hard as a mom. I hope

> the Naproxen kicks in fast for Caleb; he so deserves some relief...

> Hugs to you both, Hadley

>

>

[Guest guest]

Caleb started with a new rash this am. I emailed the DR with the

pics of the rash ( he had just started naproxyn) and he didnt feel

that it was a drug rash he felt from the pictures that we took it is

the JRA rash. WOW I never thought I would be so excited about a

rash! I just want a dx and get on with treatment! I am glad that it

is not a drug rash. I didnt think it was due to med but thought

that I had better call the DR just in case. ANd the nurse said that

from the pictures and our description that it sounds like the

rash! Hope that it truly is and not a reaction to the meds since

it took us 9 weeks to finally get something for him to take to help.

I know I'm jumping in

> here so pardon, but yes indeed that constant

> > pain will make them grumpy and totally not themself. Isabelle

was

> > just 2 yrs. so I thought it was " the terrible two's " setting in

> > before we knew what was happening. She cried so much and it

broke

> my

> > heart. I carried her every day until around 3 p.m. for about 9

> > months since she couldn't walk either. It's hard as a mom. I

hope

> > the Naproxen kicks in fast for Caleb; he so deserves some

relief...

> > Hugs to you both, Hadley

> >

> >

>

[Guest guest]

I'm so sorry to hear that Caleb is not better, but if it has to be, glad that

you probably have a diagnosis. Let us know what the next step is for him. Take

care.

and Rob 18 JAS

Re: UPDATE ON CALEB

> Caleb started with a new rash this am. I emailed the DR

> with the

> pics of the rash ( he had just started naproxyn) and he didnt

> feel

> that it was a drug rash he felt from the pictures that we took

> it is

> the JRA rash. WOW I never thought I would be so excited

> about a

> rash! I just want a dx and get on with treatment! I am

> glad that it

> is not a drug rash. I didnt think it was due to med but

> thought

> that I had better call the DR just in case. ANd the nurse

> said that

> from the pictures and our description that it sounds like the

> rash! Hope that it truly is and not a reaction to

> the meds since

> it took us 9 weeks to finally get something for him to take to help.

>

>

>

> I

> know I'm jumping in

> > here so pardon, but yes indeed that constant

> > > pain will make them grumpy and totally not themself.

> Isabelle

> was

> > > just 2 yrs. so I thought it was " the terrible two's " setting

> in

> > > before we knew what was happening. She cried so much and it

> broke

> > my

> > > heart. I carried her every day until around 3 p.m. for about

> 9

> > > months since she couldn't walk either. It's hard as a mom. I

> hope

> > > the Naproxen kicks in fast for Caleb; he so deserves some

> relief...

> > > Hugs to you both, Hadley

> > >

> > >

> >

>

>

>