Re: First time on list

[Guest guest]

Hi Sue

Welcome to the group. I know I was a parent who said the Mtx just stopped

working and am not sure if there is anyone else, but my daughter is

probably the oldest child in this list as well. Leigh-Ann is 13 now and

was diagnosed at age 2 1/2. She had been through the whole gammit of MTX

(orally and then by injection to get the full effect of the drug, even

upping the dose when she finally would grow and gain weight) and it finally

stopped working for her. The last high dose was over 20 mg once per week

(I'm not exactly sure of how much, I just know it was over 20 mg and she

was then only @ 50 pounds, she was nearly 12 years old, so image how small

she was). She is now 13 and nearly 80 pounds, and 4 feet 6 inches tall.

Sue, you must also remember that every child is different, so please don't

compare your child to mine, other children here are doing very well on the

Mtx.

I hope I answer your questions, and if you have others, please ask, others

here have lots of experience as well. Take care

-Coady

----------

> From: smhoman@...

> onelist

> Subject: [ ] First time on list

> Date: Friday, December 03, 1999 2:20 AM

>

> From: smhoman@...

>

> Hello everyone! I have been reading your posts intermittently for a while

(just a couple weeks—although I've subscribed longer!) My husband Skip and

I are the parents of , 3, and Ava, 1 1/2. 's RA symptoms

began when she was

> just 5 months old.The docs took amost 3 months to make a final diagnosis

(due to her age)

> and begin steroid treatment. The steroids worked immediately and she was

gradually

> tapered off after 9 1/2 months.She flared within a month. Her Ped. Rheum.

took the

> more conservative approach electing to try amd get it under control with

NSAIDS.

> We increased her dosage of Motrin; When that didn't work we tried

Naprosyn and Sulfasalazine.

> Finally, after 4-5 months of this he prescribed the Prednisone again.

This time a

> lower dose and she was tapered much more quickly. With this second round

of steroids, it became

> apparent after a few months that it was not going to be enough to arrest

the arthritis entirely.

> She began Methotrexate injections about 6 months later.These took about 3

1/2 months

> to see results. But I am happy to say that this has worked for her so far

and she seems to be feeling good. Her sed rate has

> climbed slightly and steadily over the past 4 months (blood work

once/month) and I am wondering

> if her dosage may just need adjusted since she has grown some and gained

weight.

> Anyone with experience in this area? Also, we give the weekly injections

which after almost a

> year of them have not gotten any easier for her. We have to physically

restrain her,

> which is just as painful for us emotionally as the shots probably are to

her physically.

>

> This is getting long but I do have some other questions. One thing that

has definitely been

> confirmed for me through this list is how different everyone's illness is

and

> how each child responds to treatment. It appears that each child also has

different

> degrees of severity with his/her RA. Has each child's RA remained at the

same level of severity since onset of the disease?

> Regarding MTX: Did I see where someone had mentioned that it simply

stopped working?

> I'd like to know more. Was the disease under control initially with the

MTX. or

> just partially?

>

> I know I had another question, but cannot recall at the moment. Thank you

to all who

> post and especially to Georgina for all the work you do to keep it going!

>

> Take care, Sue

>

>

>

[Guest guest]

Hi Sue,

So nice to get a message from you Sorry to hear that 's blood

work has been showing increased SED rate these past couple of months. It

must be worrisome for you. Has she had any more visible inflammation or

been complaining of pain lately? Since she was so young at diagnosis,

that must be tricky. She must think it's sort of normal to feel achey

and sore a lot. Josh is always saddened when he hears about children who

get this at a very young age. He says at least he was able to complain

to me about it and let me know, while a little baby can't even talk yet

and the Mom might not know what the crying is about.

You made a good point, about possibly needing to increase the dose of

meds as a child grows and puts on weight. Unfortunately, I'm not

well-informed in this area, as Josh hasn't had any major growth for the

past few years. The only time he puts on weight is when the dose of

prednisone is raised. He hasn't gained any height, either. When he

started not feeling so good about 2 months ago, the first thing I asked

the pediatrician about was maybe increasing the NSAID ~ indomethacin. A

check with the rheumatologist showed that he's currently taking the max

dose for his weight level. Instead of increasing it, we'd need to maybe

switch to a different one. We haven't yet, though. We might be able to

raise the MTX dose a little but it's right on the border line, for his

body mass.

You give the MTX shots yourselves? Here, they suggested we get it done

by a nurse at the local hospital, just a 5 minute drive away from

home/school. I liked that option, as I'd prefer he disliked the nurses

for doing it, rather than me. Actually though, he doesn't have a problem

with the injections. We're lucky. It's the blood drawings that he says

are more sore. And I see how his tears are hard on the nurses. But

that's the worst he's ever done ... cry. It looks so sad. It seems like

the little girls here on the list are the one's that are the real

fighters, when it comes to these kinds of procedures I'm sorry that

you need to go through such trauma every time needs her

injection. It must be very hard on you. I don't know how I'd handle

that.

About your question: Josh's onset of still's was definitely the absolute

worst he's ever had, probably because it wasn't being treated at that

point. None of his other flares have ever been quite so bad as that.

I've read articles that say that as time goes on, each flare is not as

bad as the previous ones ... but maybe that's because the kids are

usually still taking medicine? If Josh didn't have the meds, his doctor

says he'd most likely be crippled by now. It was that aggressive. So we

follow along with their advice about taking all the meds. I thought

before that it would be just a temporary measure until we could get it

under control, and that slowly he'd be weaned off of all of them.

Instead, it seems to have turned into a never-ending saga. Which is okay

too, except that I do get discouraged when he still has the occassional

flares!

Well, it was really nice to hear from you Sue. I hope you'll post again

sometimes, when you have a chance to. Let us know how 's doing,

okay?

Aloha,

Georgina

smhoman@... wrote:

> Hello everyone! I have been reading your posts intermittently for a while

(just a couple weeks—although I've subscribed longer!) My husband Skip and I are

the parents of , 3, and Ava, 1 1/2. 's RA symptoms began when she

was

> just 5 months old.The docs took amost 3 months to make a final diagnosis (due

to her age)

> and begin steroid treatment. The steroids worked immediately and she was

gradually

> tapered off after 9 1/2 months.She flared within a month. Her Ped. Rheum. took

the

> more conservative approach electing to try amd get it under control with

NSAIDS.

> We increased her dosage of Motrin; When that didn't work we tried Naprosyn and

Sulfasalazine.

> Finally, after 4-5 months of this he prescribed the Prednisone again. This

time a

> lower dose and she was tapered much more quickly. With this second round of

steroids, it became

> apparent after a few months that it was not going to be enough to arrest the

arthritis entirely.

> She began Methotrexate injections about 6 months later.These took about 3 1/2

months

> to see results. But I am happy to say that this has worked for her so far and

she seems to be feeling good. Her sed rate has

> climbed slightly and steadily over the past 4 months (blood work once/month)

and I am wondering

> if her dosage may just need adjusted since she has grown some and gained

weight.

> Anyone with experience in this area? Also, we give the weekly injections which

after almost a

> year of them have not gotten any easier for her. We have to physically

restrain her,

> which is just as painful for us emotionally as the shots probably are to her

physically.

>

> This is getting long but I do have some other questions. One thing that has

definitely been

> confirmed for me through this list is how different everyone's illness is and

> how each child responds to treatment. It appears that each child also has

different

> degrees of severity with his/her RA. Has each child's RA remained at the same

level of severity since onset of the disease?

> Regarding MTX: Did I see where someone had mentioned that it simply stopped

working?

> I'd like to know more. Was the disease under control initially with the MTX.

or

> just partially?

>

> I know I had another question, but cannot recall at the moment. Thank you to

all who

> post and especially to Georgina for all the work you do to keep it going!

>

> Take care, Sue

[Guest guest]

Hi Sue,

So nice to get a message from you Sorry to hear that 's blood

work has been showing increased SED rate these past couple of months. It

must be worrisome for you. Has she had any more visible inflammation or

been complaining of pain lately? Since she was so young at diagnosis,

that must be tricky. She must think it's sort of normal to feel achey

and sore a lot. Josh is always saddened when he hears about children who

get this at a very young age. He says at least he was able to complain

to me about it and let me know, while a little baby can't even talk yet

and the Mom might not know what the crying is about.

You made a good point, about possibly needing to increase the dose of

meds as a child grows and puts on weight. Unfortunately, I'm not

well-informed in this area, as Josh hasn't had any major growth for the

past few years. The only time he puts on weight is when the dose of

prednisone is raised. He hasn't gained any height, either. When he

started not feeling so good about 2 months ago, the first thing I asked

the pediatrician about was maybe increasing the NSAID ~ indomethacin. A

check with the rheumatologist showed that he's currently taking the max

dose for his weight level. Instead of increasing it, we'd need to maybe

switch to a different one. We haven't yet, though. We might be able to

raise the MTX dose a little but it's right on the border line, for his

body mass.

You give the MTX shots yourselves? Here, they suggested we get it done

by a nurse at the local hospital, just a 5 minute drive away from

home/school. I liked that option, as I'd prefer he disliked the nurses

for doing it, rather than me. Actually though, he doesn't have a problem

with the injections. We're lucky. It's the blood drawings that he says

are more sore. And I see how his tears are hard on the nurses. But

that's the worst he's ever done ... cry. It looks so sad. It seems like

the little girls here on the list are the one's that are the real

fighters, when it comes to these kinds of procedures I'm sorry that

you need to go through such trauma every time needs her

injection. It must be very hard on you. I don't know how I'd handle

that.

About your question: Josh's onset of still's was definitely the absolute

worst he's ever had, probably because it wasn't being treated at that

point. None of his other flares have ever been quite so bad as that.

I've read articles that say that as time goes on, each flare is not as

bad as the previous ones ... but maybe that's because the kids are

usually still taking medicine? If Josh didn't have the meds, his doctor

says he'd most likely be crippled by now. It was that aggressive. So we

follow along with their advice about taking all the meds. I thought

before that it would be just a temporary measure until we could get it

under control, and that slowly he'd be weaned off of all of them.

Instead, it seems to have turned into a never-ending saga. Which is okay

too, except that I do get discouraged when he still has the occassional

flares!

Well, it was really nice to hear from you Sue. I hope you'll post again

sometimes, when you have a chance to. Let us know how 's doing,

okay?

Aloha,

Georgina

smhoman@... wrote:

> Hello everyone! I have been reading your posts intermittently for a while

(just a couple weeks—although I've subscribed longer!) My husband Skip and I are

the parents of , 3, and Ava, 1 1/2. 's RA symptoms began when she

was

> just 5 months old.The docs took amost 3 months to make a final diagnosis (due

to her age)

> and begin steroid treatment. The steroids worked immediately and she was

gradually

> tapered off after 9 1/2 months.She flared within a month. Her Ped. Rheum. took

the

> more conservative approach electing to try amd get it under control with

NSAIDS.

> We increased her dosage of Motrin; When that didn't work we tried Naprosyn and

Sulfasalazine.

> Finally, after 4-5 months of this he prescribed the Prednisone again. This

time a

> lower dose and she was tapered much more quickly. With this second round of

steroids, it became

> apparent after a few months that it was not going to be enough to arrest the

arthritis entirely.

> She began Methotrexate injections about 6 months later.These took about 3 1/2

months

> to see results. But I am happy to say that this has worked for her so far and

she seems to be feeling good. Her sed rate has

> climbed slightly and steadily over the past 4 months (blood work once/month)

and I am wondering

> if her dosage may just need adjusted since she has grown some and gained

weight.

> Anyone with experience in this area? Also, we give the weekly injections which

after almost a

> year of them have not gotten any easier for her. We have to physically

restrain her,

> which is just as painful for us emotionally as the shots probably are to her

physically.

>

> This is getting long but I do have some other questions. One thing that has

definitely been

> confirmed for me through this list is how different everyone's illness is and

> how each child responds to treatment. It appears that each child also has

different

> degrees of severity with his/her RA. Has each child's RA remained at the same

level of severity since onset of the disease?

> Regarding MTX: Did I see where someone had mentioned that it simply stopped

working?

> I'd like to know more. Was the disease under control initially with the MTX.

or

> just partially?

>

> I know I had another question, but cannot recall at the moment. Thank you to

all who

> post and especially to Georgina for all the work you do to keep it going!

>

> Take care, Sue

[Guest guest]

Hi ,

Just wanted to let you know, my daughter Mandy is so similar to your

daughter. Mandy will be 13 in May, and she weighs 78 pounds. She has been on

a lot of medications over the years, and now she is taking Tolmetin,

Plaquenil, and MTX. It is so true that what may work for one child may not

work for another. When one stops working, we move on to the next. Mandy had

a really bad flare that lasted about 6 months. We finally have it under

control. She had to stop synchronized swimming, as she was in so much pain,

but now she is back to her old self again. I just savor each day that she is

ok. She is not pain free, but she can tolerate what she has now, as it does

not compare to the pain a couple of months ago. Take care, Janet Moyer

[Guest guest]

Hi Janet

I'm sure if we compared our children's medical histories they would be so

much alike. Leigh-Ann took tolmetin but this drug also lost its potency. I

feel like we own (or are at least part owners) of the drug store where I

purchase her drugs. Mandy's tolerance is probably like Leigh-Ann's, they

really are amazing children, which makes them that much more special.

Leigh-Ann seldom complains about her aches and pains, I have to ask,

because I see it in her face and can tell when she is not having a good

day. She rarely complains now, guess the kidney stones are more of a

problem, and the arthritis is secondary. They really are mentors in their

own right. Thank you for sharing.

-Coady

----------

> From: Janet & Gilbert Moyer <gjam@...>

> onelist

> Subject: Re: [ ] First time on list

> Date: Monday, December 06, 1999 6:36 PM

>

> From: " Janet & Gilbert Moyer " <gjam@...>

>

> Hi ,

> Just wanted to let you know, my daughter Mandy is so similar to your

> daughter. Mandy will be 13 in May, and she weighs 78 pounds. She has been

on

> a lot of medications over the years, and now she is taking Tolmetin,

> Plaquenil, and MTX. It is so true that what may work for one child may

not

> work for another. When one stops working, we move on to the next. Mandy

had

> a really bad flare that lasted about 6 months. We finally have it under

> control. She had to stop synchronized swimming, as she was in so much

pain,

> but now she is back to her old self again. I just savor each day that she

is

> ok. She is not pain free, but she can tolerate what she has now, as it

does

> not compare to the pain a couple of months ago. Take care, Janet Moyer

>

>

[Guest guest]

Hi ,

I have a boy, Robbie, who turned 13 a few weeks ago. He has good and bad

times,

but lives a pretty normal life. He has times that we don't even think about

JRA,

and times that it all we think about it. He is pretty small, 4'11 " and

weighs about

74 lbs.

As an update to the rest of the group, Robbie started Ebrel for 3 weeks. He

then got really, really sick. He was vomiting, fever, upper respitory

problems.

I went into a painic and quit injecting him. I really think he just had the

flue.

I am thinking I should restart it, but the entire shot thing has been a big

problem.

Robbie is normally a sunny, good natured kid. On shot days he has been a

bear from the minute he wakes up. Any advise?

Thanks, Jana

[Guest guest]

Hi Jana,

Sorry to hear that Robbie got so sick, three weeks after starting

Enbrel. I think I would have panicked, too! The same sort of thing

happened to a woman I know, who has adult onset Still's disease, when

she had been taking Enbrel for a few weeks. She needed to be

hospitalized for complications, though. And her doctors told her to

discontinue the Enbrel not just till she got over the 'infection' but

permanently. They thought it might be a reaction to the med.

Did you ask the doctors for their opinion on this? If so, what did they

say? Has Robbie been having any increased arthritis symptoms since he

stopped taking it? I forget. What else does he take regularly?

Hope he's doing okay.

~Georgina

JanaB41@... wrote:

> I have a boy, Robbie, who turned 13 a few weeks ago. He has good and bad

> times,

> but lives a pretty normal life. He has times that we don't even think about

> JRA,

> and times that it all we think about it. He is pretty small, 4'11 " and

> weighs about

> 74 lbs.

>

> As an update to the rest of the group, Robbie started Ebrel for 3 weeks. He

> then got really, really sick. He was vomiting, fever, upper respitory

> problems.

> I went into a painic and quit injecting him. I really think he just had the

> flue.

> I am thinking I should restart it, but the entire shot thing has been a big

> problem.

> Robbie is normally a sunny, good natured kid. On shot days he has been a

> bear from the minute he wakes up. Any advise?

>

> Thanks, Jana

[Guest guest]

Thanks for the response, Georgina. Robbie was sicker then

I have ever seen him. His doctors both said that they did not

think it was caused by the Enbrel. I am not sure, but I am

not wanting to take that kind of risk. I am thinking

that I need to take Robbie to a new specialist and start

over at the beginning. Is there any consensus on who

is the best? Since we live in Boise, the West coast would

be could, but certainly not mandatory. I am just feeling

really lost again.

Thanks, Jana

P.S. Robbie's eyes (pupils) were extremely dilated while

taking Enbrel, has anyone else seen this?

[Guest guest]

Our daughter , who was just diagnosed with Still's, will be going to Seattle

Children's Hosp. in January for a second opinion. We live in Portland, and

there is just one doctor here that is a pediatric rheumy. The hospital in

Seattle has a regular ped. rheumatology dept. with 4 doctors. It came

recommended to us by our pediatrician and allergist.

Re: [ ] First time on list

>From: JanaB41@...

>

>Thanks for the response, Georgina. Robbie was sicker then

>I have ever seen him. His doctors both said that they did not

>think it was caused by the Enbrel. I am not sure, but I am

>not wanting to take that kind of risk. I am thinking

>that I need to take Robbie to a new specialist and start

>over at the beginning. Is there any consensus on who

>is the best? Since we live in Boise, the West coast would

>be could, but certainly not mandatory. I am just feeling

>really lost again.

>

>Thanks, Jana

>

>P.S. Robbie's eyes (pupils) were extremely dilated while

> taking Enbrel, has anyone else seen this?

>

>

[Guest guest]

Hi Jana,

That must have been scary! I have never heard of the dilated pupils.

Sometimes this JRA can be so unsettling. I hope Robbie's feeling much

better. It does sound like a good idea to see another specialist, and at

least hear what they have to say. At least you have that option, living

in the mainland. Here in Maui we don't have any pediatric

rheumatologists and in the entire state of Hawaii I believe there are

only 2 or possibly 3. We see 2 of them, so at least I have the option of

speaking to the other if I'm unsure of something that's suggested by

one.

Take care,

Georgina

JanaB41@... wrote:

> Thanks for the response, Georgina. Robbie was sicker then

> I have ever seen him. His doctors both said that they did not

> think it was caused by the Enbrel. I am not sure, but I am

> not wanting to take that kind of risk. I am thinking

> that I need to take Robbie to a new specialist and start

> over at the beginning. Is there any consensus on who

> is the best? Since we live in Boise, the West coast would

> be could, but certainly not mandatory. I am just feeling

> really lost again.

>

> Thanks, Jana

>

> P.S. Robbie's eyes (pupils) were extremely dilated while

> taking Enbrel, has anyone else seen this?

[Guest guest]

Hi ,

It sounds like Seattle Children's Hospital will be a great place to have

your daughter seen, since they've got so many pediatric rheumatologists

there. Please let us know how it goes. What medications is she currently

taking for her systemic JRA?

Take care,

Georgina

WILLIAM PRICE wrote:

>

> From: " WILLIAM PRICE " <william.e.price@...>

>

> Our daughter , who was just diagnosed with Still's, will be going to Seattle

> Children's Hosp. in January for a second opinion. We live in Portland, and

> there is just one doctor here that is a pediatric rheumy. The hospital in

> Seattle has a regular ped. rheumatology dept. with 4 doctors. It came

> recommended to us by our pediatrician and allergist.

[Guest guest]

Thanks, . Robbie has seen Dr Wallace there 3 times. Dr Wallace is

who started him on Enbrel through our rheum. here, without seeing him.

Maybe we just need to go back.

Thanks, Jana

[Guest guest]

Georgina, n was just diagnosed in mid-November. She had a fever for

30+ days and rash. She still gets the rash pretty bad every evening. It

itches terribly! Does anyone know what we can do for this itching all over

her body? Right now n has little arthritis. Some in her wrists that

is tolerable. She is just on naprocyn at 250mg twice a day. Our physician

says that he is conservative and really doesn't want to put her on steroids.

If she worsens he said the next step would be methotrexate. How does this

all sound to you? We are looking forward to a second opinion soon.

Re: [ ] First time on list

>From: Georgina <gmckin@...>

>

>Hi ,

>

>It sounds like Seattle Children's Hospital will be a great place to have

>your daughter seen, since they've got so many pediatric rheumatologists

>there. Please let us know how it goes. What medications is she currently

>taking for her systemic JRA?

>

>Take care,

>Georgina

>

>WILLIAM PRICE wrote:

>>

>> From: " WILLIAM PRICE " <william.e.price@...>

>>

>> Our daughter , who was just diagnosed with Still's, will be going to

Seattle

>> Children's Hosp. in January for a second opinion. We live in Portland,

and

>> there is just one doctor here that is a pediatric rheumy. The hospital

in

>> Seattle has a regular ped. rheumatology dept. with 4 doctors. It came

>> recommended to us by our pediatrician and allergist.

>

>

[Guest guest]

It sounds like Seattle Children's Hospital will be a great place to have>

Seattle children's hospital is a great place. The doctors there are great.

When I was growing up that is where I went. I am a very well known person there

still. They are a bunch of very caring people there. Dr. Sherry is a great

doctor. I wish I could still go there.

My webpages:

http://fadedjeans.com/jraworld

http://www.geocities.com/acnelson24

Reach me by ICQ. ICQ# 34033888

[Guest guest]

Hi ,

Josh has been lucky because his still's rash isn't usually itchy. There

was only one time when the regular rash was itchy and the doctor

prescribed a medication but I can't think of the name of it. Actually, I

had what was left of it in the cabinet since Nov. 96 and finally threw

it away last week, while I was sorting. Another time he had an allergic

reaction to a med and the doctor said to try benadryl, which worked

wonders. It did make him a little sleepy too, though.

MTX is a very commonly prescribed med for JRA. Many of the children

represented on this list take it. My son takes 15mgs a week. It used to

be in little yellow pills, 2.5mgs each. A couple months ago we switched

to the injections. Once a week dosing. If she does take MTX, you may

want to ask the doctor about also prescribing folic acid tablets. Josh

takes 1mg a day, every day except the day he gets the methotrexate. MTX

depletes the bodies stores of folic acid. It also helps prevent unwanted

side effects that some people get from oral MTX, like nausea, thinning

hair, mouth sores, etc. Josh has never had any side effects, except the

day after dose he was sometimes more tired than usual. Now that he's

getting it injected, he seems to be more tired on the same day. I'm not

sure if it's related to the MTX, though.

Take care,

Georgina

WILLIAM PRICE wrote:

> Georgina, n was just diagnosed in mid-November. She had a fever for

> 30+ days and rash. She still gets the rash pretty bad every evening. It

> itches terribly! Does anyone know what we can do for this itching all over

> her body? Right now n has little arthritis. Some in her wrists that

> is tolerable. She is just on naprocyn at 250mg twice a day. Our physician

> says that he is conservative and really doesn't want to put her on steroids.

> If she worsens he said the next step would be methotrexate. How does this

> all sound to you? We are looking forward to a second opinion soon.

[Guest guest]

Hi ,

What age do they treat up to? Is it 21 years? That must be hard, having

had a great doctor for many years and then needing to find a new one,

just because you've gotten older. Last time we were in Honolulu we met a

young woman named Eunice. Josh already knew her, from JRA Camp, but it

was the first time I got to meet her. She was turning 21 years old that

week and so was having her very last appt with Josh's and her doctor,

Dr. Dave. It looked like she was a little sad to be moving on. I sure

hope she has found another top-notch rheumatologist to take his place.

She's also one of the patients who has recently started on Arava and

it's been very successful for her. For the first time ever, she's able

to taper off the prednisone without flaring back up again. The doctor

said she was going down by 1mg a week. She had a very similar course of

disease to my son, except she wasn't able to get early aggressive

treatment back then. It was basically just aspirin therapy in the

beginning and that wasn't enough to halt the joint damage. She was 7

when her systemic JRA started. Now she's got new knees, hips, etc. And

she's very tiny, about 4 feet tall or so. So she looks much younger than

her age. She's still going to be helping out at the JRA Camp, which is

great because all the kids love her

Aloha,

Georgina

> wrote:

>

> It sounds like Seattle Children's Hospital will be a great place to

> have>

>

> Seattle children's hospital is a great place. The doctors there are

> great. When I was growing up that is where I went. I am a very well

> known person there still. They are a bunch of very caring people

> there. Dr. Sherry is a great doctor. I wish I could still go there.

>

> My webpages:

> http://fadedjeans.com/jraworld

> http://www.geocities.com/acnelson24

> Reach me by ICQ. ICQ# 34033888

[Guest guest]

Georgina

Children's treat you up to the age of 21. I am still in touch with Dr. Sherry

by way of email all the time. Dr. Sherry was my third doctor that I had seen

and the longest. I first saw Dr. Wallace when she was at children's but she

later moved on. Yeah it is hard to find a good doctor after getting use to one.

But he has given me some good referrals to others that he know that treat adults

so that has helped. It would be nice to be a kid just long enough to go to him

for my treatment but I don't think I would pass looking like a kid anymore.

My webpages:

http://fadedjeans.com/jraworld

http://www.geocities.com/acnelson24

Reach me by ICQ. ICQ# 34033888

Re: [ ] First time on list

Hi ,

What age do they treat up to? Is it 21 years? That must be hard, having

had a great doctor for many years and then needing to find a new one,

just because you've gotten older. Last time we were in Honolulu we met a

young woman named Eunice. Josh already knew her, from JRA Camp, but it

was the first time I got to meet her. She was turning 21 years old that

week and so was having her very last appt with Josh's and her doctor,

Dr. Dave. It looked like she was a little sad to be moving on. I sure

hope she has found another top-notch rheumatologist to take his place.

She's also one of the patients who has recently started on Arava and

it's been very successful for her. For the first time ever, she's able

to taper off the prednisone without flaring back up again. The doctor

said she was going down by 1mg a week. She had a very similar course of

disease to my son, except she wasn't able to get early aggressive

treatment back then. It was basically just aspirin therapy in the

beginning and that wasn't enough to halt the joint damage. She was 7

when her systemic JRA started. Now she's got new knees, hips, etc. And

she's very tiny, about 4 feet tall or so. So she looks much younger than

her age. She's still going to be helping out at the JRA Camp, which is

great because all the kids love her

Aloha,

Georgina

> wrote:

>

> It sounds like Seattle Children's Hospital will be a great place to

> have>

>

> Seattle children's hospital is a great place. The doctors there are

> great. When I was growing up that is where I went. I am a very well

> known person there still. They are a bunch of very caring people

> there. Dr. Sherry is a great doctor. I wish I could still go there.

>

> My webpages:

> http://fadedjeans.com/jraworld

> http://www.geocities.com/acnelson24

> Reach me by ICQ. ICQ# 34033888

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[Guest guest]

we gave our daughter Benadral for her iching when she was first sick and had

the rash all over it seemed to work

>From: " WILLIAM PRICE " <william.e.price@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] First time on list

>Date: Mon, 13 Dec 1999 09:37:28 -0800

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>From: " WILLIAM PRICE " <william.e.price@...>

>

>Georgina, n was just diagnosed in mid-November. She had a fever for

>30+ days and rash. She still gets the rash pretty bad every evening. It

>itches terribly! Does anyone know what we can do for this itching all over

>her body? Right now n has little arthritis. Some in her wrists that

>is tolerable. She is just on naprocyn at 250mg twice a day. Our physician

>says that he is conservative and really doesn't want to put her on

>steroids.

>If she worsens he said the next step would be methotrexate. How does this

>all sound to you? We are looking forward to a second opinion soon.

> Re: [ ] First time on list

>

>

> >From: Georgina <gmckin@...>

> >

> >Hi ,

> >

> >It sounds like Seattle Children's Hospital will be a great place to have

> >your daughter seen, since they've got so many pediatric rheumatologists

> >there. Please let us know how it goes. What medications is she currently

> >taking for her systemic JRA?

> >

> >Take care,

> >Georgina

> >

> >WILLIAM PRICE wrote:

> >>

> >> From: " WILLIAM PRICE " <william.e.price@...>

> >>

> >> Our daughter , who was just diagnosed with Still's, will be going to

>Seattle

> >> Children's Hosp. in January for a second opinion. We live in Portland,

>and

> >> there is just one doctor here that is a pediatric rheumy. The hospital

>in

> >> Seattle has a regular ped. rheumatology dept. with 4 doctors. It came

> >> recommended to us by our pediatrician and allergist.

> >

> >

>

>

[Guest guest]

,

I think we are going to give Dr. Sherry a try. You sure seem to think highly

of him.

Thanks, Jana

[Guest guest]

Jana

I think you will like him really well. He is great with kids. He is a very

good doctor. That whole hospital is great. I spent alot of time there when I

was younger. If it wasn't for all of them I wouldn't be where I am today. I am

very thankful of all of them there. Tell Dr. Sherry I said hi Goodluck

My webpages:

http://fadedjeans.com/jraworld

http://www.geocities.com/acnelson24

Reach me by ICQ. ICQ# 34033888

Re: [ ] First time on list

,

I think we are going to give Dr. Sherry a try. You sure seem to think highly

of him.

Thanks, Jana

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[Guest guest]

had a classic rash at onset, but it did not itch. What itched was the

Prednisone and Solumedrol. After she had a small build up in her system of

it she would sit around for hours itching anything and every thing. IT

stopped when we switched to a different steroid.

[Guest guest]

Hello All!

My daughter, was diagnosed in November also. She is 14, and like

n, she had fevers and rash. She would sit and cry for hours because of the

itching. The rheumy's had her on 2 different 'itch medicines' they helped take

the edge off the itch. They were IC Hydroxyzine Hcs 25mg. 3x day, this worked

better than the Zyrtec 10mg. 1x daily. What really helped the most was Aveeno

lotion for Dry Skin. We had tried the bath additives and everything else, but

the lotion and Aveeno Dry Skin bar soap really made the difference. They also

have a lotion especially for itching, called appropriately Itch Cream which

really helped also, but it is difficult to find. Her flare only?? lasted for 6

weeks, that is the extreme fatigue, and the rash so her Drs. are questioning

their Systemic JRA diagnosis. I am not, her symptoms match alot of what I've

seen on the list, her fevers slowly faded after starting the Naproxen 325mg. 2x

daily. After the fevers faded, she would still have bone deep chills in the

evening, this is still with the active rash, and would take most of the night to

get her warmed up. I hope some of this info can help your children, I would

love if no child ever had to go through the misery of that JRA rash again. I

have seen how much agony my daughter went through in her flare and my thoughts

and prayers go out to everyone suffering through this. Jodi

WILLIAM PRICE wrote:

> From: " WILLIAM PRICE " <william.e.price@...>

>

> Georgina, n was just diagnosed in mid-November. She had a fever for

> 30+ days and rash. She still gets the rash pretty bad every evening. It

> itches terribly! Does anyone know what we can do for this itching all over

> her body? Right now n has little arthritis. Some in her wrists that

> is tolerable. She is just on naprocyn at 250mg twice a day. Our physician

> says that he is conservative and really doesn't want to put her on steroids.

> If she worsens he said the next step would be methotrexate. How does this

> all sound to you? We are looking forward to a second opinion soon.

> Re: [ ] First time on list

>

> >From: Georgina <gmckin@...>

> >

> >Hi ,

> >

> >It sounds like Seattle Children's Hospital will be a great place to have

> >your daughter seen, since they've got so many pediatric rheumatologists

> >there. Please let us know how it goes. What medications is she currently

> >taking for her systemic JRA?

> >

> >Take care,

> >Georgina

> >

> >WILLIAM PRICE wrote:

> >>

> >> From: " WILLIAM PRICE " <william.e.price@...>

> >>

> >> Our daughter , who was just diagnosed with Still's, will be going to

> Seattle

> >> Children's Hosp. in January for a second opinion. We live in Portland,

> and

> >> there is just one doctor here that is a pediatric rheumy. The hospital

> in

> >> Seattle has a regular ped. rheumatology dept. with 4 doctors. It came

> >> recommended to us by our pediatrician and allergist.

> >

> >

>

>

[Guest guest]

This is my first time on the list. My son Jeff was rx'd in June, 1998 at the

age of

13. At that time, there was very little on the web regarding Still's. I'm

happy

to see this list. I first ran across it at work and had to leave the room after

reading the messages and remembering the pain my son was in.

Jeff was rx'd after about a month of agony and misdiagnoses. There were a

couple of

times he couldn't walk to the ambulance to go to the emergency room. By the

time he

walked into the gp's office like a little old man and about 30 pounds

underweight,

the gp sent us to DuPont. We were referred to an infectious disease specialist

who

took one look at him and made the correct diagnosis. Jeff's rheumy, Dr.

Rose', hospitalized him overnight and put him on Prednizone and Indomethacin. I

may

be predjudiced, but DuPont is the best! As is Dr. Rose'.

He has not had another really bad day in over a year; he went off of the

Prednizone

in August and has just been taken off of the Indo. It does take a long time to

taper the Prednizone.

If he can stay symptom-free for six months, Dr. Rose' will be ready to call it a

remission.

I pray for all of you and all of your children.

[Guest guest]

Hi ,

So nice to meet someone close to me....... My daughter Mandy was diagnosed

when she was 18 months old. She is now 12 1/2. She still sees Dr. Athreya,

at DuPont, but will eventually see Dr. Rose.... Mandy has been seeing Dr.

Athreya, her entire life, but he has retired. He still checks in on her

though. He is the sweetest Dr. I live near Valley Forge. Mandy has

polyarticular arthritis. She is affected in her knees, ankles, wrists, and

elbows. She takes Tolmetin, Plaquenil, and MTX. If you have any questions,

just ask, ok? Take care, Janet Moyer

Re: [ ] First time on list

> From: Valverde <cvalverde@...>

>

> This is my first time on the list. My son Jeff was rx'd in June, 1998 at

the age of

> 13. At that time, there was very little on the web regarding Still's.

I'm happy

> to see this list. I first ran across it at work and had to leave the room

after

> reading the messages and remembering the pain my son was in.

>

> Jeff was rx'd after about a month of agony and misdiagnoses. There were a

couple of

> times he couldn't walk to the ambulance to go to the emergency room. By

the time he

> walked into the gp's office like a little old man and about 30 pounds

underweight,

> the gp sent us to DuPont. We were referred to an infectious disease

specialist who

> took one look at him and made the correct diagnosis. Jeff's rheumy, Dr.

> Rose', hospitalized him overnight and put him on Prednizone and

Indomethacin. I may

> be predjudiced, but DuPont is the best! As is Dr. Rose'.

>

> He has not had another really bad day in over a year; he went off of the

Prednizone

> in August and has just been taken off of the Indo. It does take a long

time to

> taper the Prednizone.

>

> If he can stay symptom-free for six months, Dr. Rose' will be ready to

call it a

> remission.

>

> I pray for all of you and all of your children.

>

>

[Guest guest]

Janet,

We live near West Grove, about half an hour from DuPont. Being systemic, of

course he had the rash, fevers, night sweats, chills, and was affected in his

wrists, elbows, ankles and knees, with the knees being the worst. Jeff wasn't

rx'd with systemic jra until he was 13, so he never saw Dr. Athreya. You'll

really like Dr. Rose'; he's a wonderful doctor and a really nice guy.

Jeff is doing quite well; he is currently off of all meds and his outlook is

fortunately very good. Unless he has another flare-up, he doesn't see Dr. Rose'

again until March.

How is Mandy doing? Try to keep her off of Prednizone, if you can. It is a

real miracle to watch how quickly the symptoms will subside, but it can cause so

many other problems and takes a long time to taper off. But I guess you

probably knew that.