Update on

[Guest guest]

Dear Georgina,

What a traumatic 24 hours! I feel for both you and Josh. It must be very

difficult to seriously consider new therapies with unproven results or

potentially nasty side-effects. One never knows if one has made the right

decision ... but on the other hand you are so thoughtful and caring that I'm

sure you and Josh will come through this, even if it's another cold! The

chest pain didn't sound good though.

Sounds like you need to have a big sit-down with the Rheumy and keep him/her

there until you both are comfortable with the next/or continuing course of

treatment. I'll keep you both in my thoughts.

N.

[Guest guest]

Hi Georgina,

I hope this morning, Josh is better. How you say, this disease is chronic

and the symptoms different in each kid. Diego wasn't lucky with MTX and he's

on corticoids again, IV first and the rheumy is evalluating his next

treatment when he leaves the hospital. I have these fright moments

continually since him began with JRA.... Now for example he has a very big

stomach like a drum and I'm concern... The doctor sais us this is a effect

of corticoids. The appearance of Dieguito changed totally these last

days....

I only have left to request you to have force and patience, the calm part

of this " russian mountain " is to the turn of the corner :-)

Kisses for

--------------

[ ] Update on

From: Georgina <gmckin@...>

Hi Everyone,

We had a little scare with last night and this morning. This is

the reason I haven't been online much... Although he was tired, he was

up till after midnight. His chest hurt too much to lay down. Finally, I

gave him 1 teaspoon of the prometh w/codeine syrup the doctor prescribed

last time he had chest pains, in March. At 5 am this morning, Josh woke

me with his cries. Fever was only 100 f. but he was having difficulty

breathing, more pain in his right side chest. For the first time ever,

he was hyper ventilating. I was very concerned and worried. He didn't

look good. Got my daughter ready for school and called the pediatricain

as soon as the office opened. He was doing much better by the time we

arrived (8:30) and his breathing was back to normal but by then, the

rash had appeared. And he felt a little bit dizzy. His joints were all

pretty good, except for his right wrist and one finger. I mentioned to

the nurse that I hoped I wasn't overreacting. On the phone, I had really

just wanted to speak with the doctor and see what I could do to help

Josh's breathing and chest pain. She told me to come right in,

immediately. It might be pleurisy again. Doctor said I did the right

thing. If I ignored that, he might get a pleural effusion, maybe a

collapsed lung, compromise his wellbeing, etc. He said anytime Josh is

in major discomfort or distress, bring him in.

Needed to go get more chest xrays done. And a throat culture. While we

were downstairs getting the xrays done, doctor called the rheumatologist

and they talked again about Josh maybe needing the cyclophoshamide pulse

therapies in Oahu. When he mentioned this, I was very emotional. I told

him how much confidence I've had in their treatment but how it amazes me

that after 4 years, this is the best results we've gotten. Josh has

tried nearly every conventional medicine and still has flares and scary

moments. Yes, we all know that this illness is chronic and that each

individual will respond differently. But I again relayed my fears of the

cyclophosphamide treatments and the long term side effects that are

possible. Never mind the inconvenience of needing to fly off island for

several days each month and arranging for care for my daughter and our

pets, etc.

It was a very stressful visit. I needed several tissues. Fortunately, by

this time Josh had started to feel better. And I guess it was good to

vent my frustrations, since he's been following Josh's case since he

first got sick. This is the same doctor who admit Josh to the hospital,

first time. We also talked about other options the rheumatologist

mentioned. Perhaps doing the prednisone IV Pulses, that others here have

tried. That, too, would require us to fly away to Oahu. Another option

mentioned was perhaps switching from oral Methotrexate to subcutaneous

injections, weekly. But staying at the same dose, 15mgs. That we could

do here, at the local hospital, in the outpatient cancer unit. That

sounds like a better idea, to me. I noticed that Yvsa just started the

IV MTX, too.

The pediatrician went online while I was there, to learn about the new

drug I mentioned. He hadn't even heard about Enbrel! I told him about

the Immunex site. He faxed the rheumatologist the press release about

Enbrel being approved for kids. Rheumatologist said that now that it's

been approved for use in children, he doesn't necessarily want to jump

right on the bandwagon but he's more interested in it as a possibility.

Pediatrician was quick to point out the possible dangers. So, I jumped

in and said I'd be more willing to have Josh try Enbrel than the

Cyclophosphamide IV Pulses. Pediatrician, at least, is willing to say

that Josh may be failing the traditional JRA meds. Despite it being

under control a lot of the time, he still has flares and pain and

discomfort sometimes. That's his idea of failing the meds.

Right now, it's a wait and see what happens. No change in his meds, for

the time being. I'll monitor Josh closely and if he starts to get bad

again, pediatrician wants us to fly over to see rheumatologist. If Josh

seems to be okay, we wait until rheumy visits in 3 weeks time. Then,

figure out what we should do next.

So, tonight while we're upstairs reading, I notice that Josh suddenly

has a runny nose and sneezes and a slight cough. And then, it all sort

of made more sense. If all these crazy symptoms were just a precursor to

his catching a cold, I'll be ready to faint. You'd think that after 4

years of this stuff, I'd be able to tell the difference between a life

threatening situation and the crazy way his body sometimes responds to a

simple, common virus! This kind of thing has happened before! I guess

I'll know better in the morning. So, I'm going to bed now. And I'll

write again this weekend. Send healing energies, if you can :-)

Take care,

Georgina

------------------------------------------------------------------------

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Join a new list today!

------------------------------------------------------------------------

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Georgina

I read about and hope all is well again. Leigh-Ann and I have been

living with this for 10 years and we never know what to expect. Don't feel

bad about the way you reacted, I still sometimes overreact. Leigh-Ann was

given MTX subq for a number of years and it worked much better than by

mouth. It is definitely worth the try. You know that the drug looses some

of its effect when taken by mouth, so when given by injection you get the

full effect. I hope all is well again, take care.

S-C.

----------

> From: Georgina <gmckin@...>

> < onelist>; stillsgroup

<stillsdisease@...>

> Subject: [ ] Update on

> Date: Saturday, June 05, 1999 8:46 AM

>

> From: Georgina <gmckin@...>

>

> Hi Everyone,

>

> We had a little scare with last night and this morning. This is

> the reason I haven't been online much... Although he was tired, he was

> up till after midnight. His chest hurt too much to lay down. Finally, I

> gave him 1 teaspoon of the prometh w/codeine syrup the doctor prescribed

> last time he had chest pains, in March. At 5 am this morning, Josh woke

> me with his cries. Fever was only 100 f. but he was having difficulty

> breathing, more pain in his right side chest. For the first time ever,

> he was hyper ventilating. I was very concerned and worried. He didn't

> look good. Got my daughter ready for school and called the pediatricain

> as soon as the office opened. He was doing much better by the time we

> arrived (8:30) and his breathing was back to normal but by then, the

> rash had appeared. And he felt a little bit dizzy. His joints were all

> pretty good, except for his right wrist and one finger. I mentioned to

> the nurse that I hoped I wasn't overreacting. On the phone, I had really

> just wanted to speak with the doctor and see what I could do to help

> Josh's breathing and chest pain. She told me to come right in,

> immediately. It might be pleurisy again. Doctor said I did the right

> thing. If I ignored that, he might get a pleural effusion, maybe a

> collapsed lung, compromise his wellbeing, etc. He said anytime Josh is

> in major discomfort or distress, bring him in.

>

> Needed to go get more chest xrays done. And a throat culture. While we

> were downstairs getting the xrays done, doctor called the rheumatologist

> and they talked again about Josh maybe needing the cyclophoshamide pulse

> therapies in Oahu. When he mentioned this, I was very emotional. I told

> him how much confidence I've had in their treatment but how it amazes me

> that after 4 years, this is the best results we've gotten. Josh has

> tried nearly every conventional medicine and still has flares and scary

> moments. Yes, we all know that this illness is chronic and that each

> individual will respond differently. But I again relayed my fears of the

> cyclophosphamide treatments and the long term side effects that are

> possible. Never mind the inconvenience of needing to fly off island for

> several days each month and arranging for care for my daughter and our

> pets, etc.

>

> It was a very stressful visit. I needed several tissues. Fortunately, by

> this time Josh had started to feel better. And I guess it was good to

> vent my frustrations, since he's been following Josh's case since he

> first got sick. This is the same doctor who admit Josh to the hospital,

> first time. We also talked about other options the rheumatologist

> mentioned. Perhaps doing the prednisone IV Pulses, that others here have

> tried. That, too, would require us to fly away to Oahu. Another option

> mentioned was perhaps switching from oral Methotrexate to subcutaneous

> injections, weekly. But staying at the same dose, 15mgs. That we could

> do here, at the local hospital, in the outpatient cancer unit. That

> sounds like a better idea, to me. I noticed that Yvsa just started the

> IV MTX, too.

>

> The pediatrician went online while I was there, to learn about the new

> drug I mentioned. He hadn't even heard about Enbrel! I told him about

> the Immunex site. He faxed the rheumatologist the press release about

> Enbrel being approved for kids. Rheumatologist said that now that it's

> been approved for use in children, he doesn't necessarily want to jump

> right on the bandwagon but he's more interested in it as a possibility.

> Pediatrician was quick to point out the possible dangers. So, I jumped

> in and said I'd be more willing to have Josh try Enbrel than the

> Cyclophosphamide IV Pulses. Pediatrician, at least, is willing to say

> that Josh may be failing the traditional JRA meds. Despite it being

> under control a lot of the time, he still has flares and pain and

> discomfort sometimes. That's his idea of failing the meds.

>

> Right now, it's a wait and see what happens. No change in his meds, for

> the time being. I'll monitor Josh closely and if he starts to get bad

> again, pediatrician wants us to fly over to see rheumatologist. If Josh

> seems to be okay, we wait until rheumy visits in 3 weeks time. Then,

> figure out what we should do next.

>

> So, tonight while we're upstairs reading, I notice that Josh suddenly

> has a runny nose and sneezes and a slight cough. And then, it all sort

> of made more sense. If all these crazy symptoms were just a precursor to

> his catching a cold, I'll be ready to faint. You'd think that after 4

> years of this stuff, I'd be able to tell the difference between a life

> threatening situation and the crazy way his body sometimes responds to a

> simple, common virus! This kind of thing has happened before! I guess

> I'll know better in the morning. So, I'm going to bed now. And I'll

> write again this weekend. Send healing energies, if you can :-)

>

> Take care,

> Georgina

>

>

> ------------------------------------------------------------------------

> ONElist: where real people with real interests get connected.

>

> Join a new list today!

> ------------------------------------------------------------------------

> Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi N,

Thanks for your message. Yes, even after all this time, we still get startled

sometimes with 's symptoms. Sure enough, it seems like Josh has caught

nothing more than a common cold. Sniffling, runny nose, etc. I guess the chest

pain stuff was related to some inflammation going on in there. History repeats

itself, yet again!

Yes, the rheumatologists will be coming to our island at the end of this month.

We have very long, in-depth appts and are able to sit down and discuss all our

concerns. Sometimes our appt lasts almost two hours! I definitely plan on asking

a lot of questions. Tomorrow is the last day of school for the children, so if

we do have to make some changes and fly over for treatments, this will be the

most convenient time to do so. I'll let you guys know what we learn or what we

decide.

Take care,

Georgina

[Guest guest]

Hi ,

Thanks for writing. These messages do really help. I guess as time goes on it

gets a bit easier to handle the ups and downs associated with JRA but still,

there can be lots of surprises. Sudden, unexpected moments that you come to

learn can happen at any time are still a bit frightening whenever they occur. I

think I have a few more grey hairs, now :-) Yes, there is always a light at the

end of the tunnel. Just that there seems to be more tunnels in this maze than I

was expecting!

, I think a while ago I sent you a picture of Josh when he was on high dose

steroids and had Cushingoid symptoms? Do you remember that? His appearance had

changed so drastically because of the medicine. It took some getting used to,

for sure. It was a big adjustment for Josh as well as the rest of us that are

close to him. It seemed like another trial, because as soon as we did adjust to

the new appearance, we started tapering the prednisone dose and the side effects

were no longer so strong. He started to look like the regular Josh we were used

to, again. This time around, even at 30mgs a day, he's not so bloated. I don't

quite know why, but I'm not complaining! Neither is he!

I hope Diego will begin feeling better soon. And don't worry. As he lowers the

dosage, his appearance will return to more what you're used to. I hope, though,

that he's not getting bothered by a lot of people pinching at his 'cute' cheeks!

That used to make so mad. Even strangers would greet him and touch his

cheeks. Being on the quiet side (with people he doesn't know) he didn't say

much, until one day he had finally had enough. A little old woman pinched his

cheeks and he told her, " ...I don't walk over to you and touch you. So you

shouldn't do it to me. It's not polite! My cheeks look like this because of the

medicine I have to take. This isn't the way I look all the time. Only when I'm

very sick! " The poor old woman was so sorry. She didn't know it bothered him

until he told her. So, he started telling others more of the time. And he was

proud that he could speak up for himself about something that was important to

him, too. I think it was a good lesson for him to learn.

Take care,

Georgina

[Guest guest]

Hi Kaaren SC,

Thanks for sharing news of your daughter's experience with MTX. Maybe the oral

dose is having less of an effect for Josh, since he's been taking it orally for

4 years. He started at 7.5mgs and is now up to 15, for the past 2 or 3 months.

That's definitely something I'll talk to the rhuematologist about, when we see

him.

You're right. I guess it's better to over react than to under react. We never

really know when or if it's going to be something serious so it's best not to

take any chances. I still feel guilty about the time I took Josh back to school

after a trip to the pediatrician's, so he could be present for a test they were

having. Then, when I got home, I got a call from the doctor saying that the

xrays he just took and analyzed showed Josh had pneumonia! That made me feel

awful. I went and picked him up right away!

Take care,

Georgina

[Guest guest]

Hi Georgina,

I suppose in any moment all kids bothered with this. Here, people that

knows Diego know about his illness and don't touch him. Now, he's better.

Probably he come back to home on Friday. In a inmediate future he'll need a

bone biopsy, only a possibility....

Yesterday he was very encouraged and he invited all the nurses of the

service to eat in " Kentucky Fried Chicken " , his favourite place. He said

them " Don't worry girls, I pay.... " :-)

Regards,

--------------

[Guest guest]

Hi ,

It's so good to hear that Diego is starting to get well again. How sweet he is,

to invite all the nurses for dinner :-) What a big heart he has! They must

really love him. I hope he will be coming home tomorrow. And be strong enough

to stay well, this time.

Take Care,

Georgina

[Guest guest]

Georgina,

> Send healing energies, if you can :-)

Megawatts of healing energy is on its way from us!

Cheers and Aloha

Helge

[Guest guest]

Hi Leonard,

I'm sorry to read that hasn't been doing well.

Our son Elliot takes Enbrel and it comes in a kit which you have to prepare

the powder filled syringe with diluent to prepare for injection. I was

initially provided with a preparation and administering guide and was looking

through it for info. It didn't say anything about how long a prepared dose

remains effective just that the solutionshould remain clear without

particles. They spend so much time explaining how to prepare it so I

wonder... they do provide a toll free number 1-888-436-2735 for any questions.

Rena

[Guest guest]

Hello Leonard,

It's always nice to see a message from you, here. I am sorry though that

has been having a hard time these last few weeks. I hope he'll

begin to feel better soon. His case seems very similar to my son Josh's.

I think I remember reading somewhere else that someone believed their

Enbrel supply was losing potency/effectiveness after storage, as well.

Have you mentioned this to the doctor or pharmacist yet to hear their

opinion? Preparing the injections yourself may just help to solve that

problem. Good idea.

That sounds exciting, about the upcoming filming. They had the camera

crew here last May to film Josh and a couple other JRA kids at their

rheumatology appts, to broadcast on a telethon. We were told it would

air on a certain date and came in from a trip to the beach one Sunday to

find that it was actually on a week earlier... and we had missed the

segment on Josh! Plenty other people had been watching and called us to

say they saw us on TV, but we were still swimming and enjoying the

waves! Oh, well. I hope it all goes well.

Thank you for sending the update :-)

Aloha,

Georgina

> Leonard Kroft wrote:

>

> Hi Folks,

> It has been a while so I thought I should post an update on

> . He has not been able to walk, except for a few painfull

> steps, in about 2 weeks. HIS sed rate is 52 and white blood cell

> count is33. He is now on 13mg prednisolone, 10 mg enbrel, 50 mg

> cyclosporin, and 20 mg. methotrexate injected. Every 4 weeks we get 8

> premixed syringes of enbrel that we keep in the fridge for his twice

> weekly injections. He seems to get worse near the end of the months

> supply and I suspect that the enbrel is going " stale " . I hope that

> they will allow me to prepare the injections myself. How is the

> enbrel delivered to the others using it?

> On Saterday had painfull stomach cramps. His Mom brought

> him into emergancy since his pedeatrition was out of town. We where

> concerned that it may be an ulcer. The emerg doc wanted to put him on

> i.v. antibiotics , which my wife and I felt was unnessasery since we

> did not suspect an infection. The doc agreeded to hold of on the

> antibiotics if we admitt him for a couple of days for observation

> while blood culturers are being done.

> Since the present drus do not seem to be worrking well enough, our

> pediatric rhumatologist is favouring i.v. immunoglobin.

> Steroid/cyclophosphamides pulses seem to be his next choice. Stem

> cell rescue has moved further down the list. It is hard to find

> information on immunoglobin treatment.except for what was posted

> here(thanks Georgina).

> In 10 days a film crew will come from Vancouver to film a vingette

> on for " the show of hearts " telethon by the variety club.

> The procducers saw his picture and though he was cute. They want to

> film him at school and at home playing with his friends and then do an

> interview with my wife and myself. They also want us at the broadcast

> to come on stage. I hope I can get my wife to do the stage thing

> herself , but I don't think I can get out of doing the interview. I

> sounds like it it will be quite a production since the film crew will

> be here for a day and a half.

> It was interesting about the connection between bipolar wode

> disorder and s.o.j.r.a. that was mentioned here. My wife has been

> commited to a psyciactric ward twice in the last 2 years for that.

> The second time was two months after the birth of out daughter.

>

> Sincerely

> Leonard Kroft

> lkroft@...

>

> " Life is what happens when your busy making other plans " Lennon

[Guest guest]

Hi Leonard,

The information I have is that you must use the Enbrel within 6 hours

of mixing. We get it from the pharmacy and mix and inject at home.

Good luck! Jana

[Guest guest]

Hi Amy,

My son, Robbie, had this done last year. The worst part of it is

being put under. Since has been put under before, you

know what to expect. Robbie has had stomach discomfort and

blood in his stools since his first year of JRA. They didn't find

any ulcers or problems, which helped my peace of mind.

Good luck, Jana

[Guest guest]

Hi, I hope all goes well with 's test. My daughter,

has had problems with her stomach also. She had blood in her stools when

she was one and then again just this year when she was six. They never

found anything causing the problem. Her stomach always hurts when she has

a flare. I was wondering if there is something causing this from the

systemic jra? If anyone has heard of anything besides the medicines and

ulcers? The doctors do not seem to know why:. Thanks and good luck,

Molly

On Fri, 10 Mar 2000 09:43:59 EST JANABECKER@... writes:

> From: JANABECKER@...

>

> Hi Amy,

>

> My son, Robbie, had this done last year. The worst part of it is

> being put under. Since has been put under before, you

> know what to expect. Robbie has had stomach discomfort and

> blood in his stools since his first year of JRA. They didn't find

> any ulcers or problems, which helped my peace of mind.

>

> Good luck, Jana

>

>

------------------------------------------------------------------------

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> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/937/1/_/524922/_/952699447/

>

------------------------------------------------------------------------

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

[Guest guest]

n complains of headaches and stomachaches when she is in a flare with

her systemic JRA. We thought at first it was the medicine, but I think it

is part of the disease.

Re: update on

>From: jfive99@...

>

> Hi, I hope all goes well with 's test. My daughter,

>has had problems with her stomach also. She had blood in her stools when

>she was one and then again just this year when she was six. They never

>found anything causing the problem. Her stomach always hurts when she has

>a flare. I was wondering if there is something causing this from the

>systemic jra? If anyone has heard of anything besides the medicines and

>ulcers? The doctors do not seem to know why:. Thanks and good luck,

>Molly

>

>On Fri, 10 Mar 2000 09:43:59 EST JANABECKER@... writes:

>> From: JANABECKER@...

>>

>> Hi Amy,

>>

>> My son, Robbie, had this done last year. The worst part of it is

>> being put under. Since has been put under before, you

>> know what to expect. Robbie has had stomach discomfort and

>> blood in his stools since his first year of JRA. They didn't find

>> any ulcers or problems, which helped my peace of mind.

>>

>> Good luck, Jana

>>

>>

>------------------------------------------------------------------------

>> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

>> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>> 1/937/1/_/524922/_/952699447/

>>

>------------------------------------------------------------------------

>>

>> For links to websites with JRA info visit:

>> http://www.geocities.com/Heartland/Village/8414/Links.html

>>

>

>------------------------------------------------------------------------

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>0.0% Intro or 9.9% Fixed APR and no hidden fees.

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>------------------------------------------------------------------------

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Amy

Hope all goes well with 's procedure next week.

Liane

update on From: Amy Fox <foxpro@...> Hello, Everyone!We took up to Dorenbacher Children's hospital today (in Portland). She saw a Ped. Gastronologist today. During the whole appointment was so gassy. The Dr. is going to do a EGD (esophagogastroduodenoscopy). This procedure involves looking at the esophagus, stomach and the small intestine using an instrument made of thin flexible tubing with a light source on the end. The Dr. will remove some tissue sample for a biopsy. They want to check to see if she has Celiac Disease. Also they want to check for an ulcer.She has to be put under (this will be the third time in her life). This procedure will be done next Wednesday (15th) at 8:30 a.m. We will have to stay in Portland the night before because it is a long drive for us to try to get to the hospital by 7:30 a.m. She will be able to come home that same day. And it takes 3 working days to find out the results.Well, that is the update!love,AmyMother to 3 years old / Andy 2 years old / Maddie 9 months old(quick.... has been on strong med's for her Juvenile Rheumatoid arthritis. It has finally caused really bad stomach pain.)

For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi Amy,

I was just wondering how 's doing. I know that testing procedure

you mentioned is just a few days from now. Wanted to send my wishes that

everything goes well while you're in Portland. You and will be

in my thoughts. Send us an update, when you can.

Aloha,

Georgina

[Guest guest]

Thats wonderful news Amy, Good luck to you and .

> Well, had her Ped. Rheumy appointment yesterday. It was a

good

> report. She isn't in remission. The Dr. told me she would have to

have

> good labs, check up with no problems, no problems at home

(stiffness and

> swelling) for a year before they would take her off of mtx.

>

> At this point we look like we are headed that way. I'm excited.

This is

> the most hope I have had ever with this disease.

>

> will see the Gastronologist on May 10th. Re-cap, she had

such

> sever stomach pain she couldn't sleep at night or eat during the

day. She

> was going to have an EGD done. She caught a cold each time it was

suppose

> to be done so they cancelled the EGD. I took the family off of

diary (to

> help get over the cold) and her pains in her stomach went away.

Yea!!!

>

> I got to see and her family yesterday. n (who is 11

years old)

> and (3 1/2 years old) buddy-up and played together.

*smiles*

>

> God Bless,

> Amy

> Mother to 3 1/2 years old / Andy 2 years old / Maddie 11

months old

[Guest guest]

Hi Amy,

Thanks for your message. It's good to hear that is doing so

much better these days. I hope everything continues this way, with no

setbacks. I'm also glad that you tried those dietary changes ... and

found that they helped.

I think it's really terrific that you and others in the group have

actually gotten to meet one another. The internet is such an amazing

resource and it's so cool to hear about the ways it's bringing people

together. I still can't get over the fact that we've even been able to

'meet' so many others who are affected by JRA, even if it's just through

email messages. Who knows. Maybe someday they'll have a JRA conference

in Hawaii and hopefully, I'll see some of you there

Take care,

Georgina

Amy Fox wrote:

>

> Well, had her Ped. Rheumy appointment yesterday. It was a good

> report. She isn't in remission. The Dr. told me she would have to have

> good labs, check up with no problems, no problems at home (stiffness and

> swelling) for a year before they would take her off of mtx.

>

> At this point we look like we are headed that way. I'm excited. This is

> the most hope I have had ever with this disease.

>

> will see the Gastronologist on May 10th. Re-cap, she had such

> sever stomach pain she couldn't sleep at night or eat during the day. She

> was going to have an EGD done. She caught a cold each time it was suppose

> to be done so they cancelled the EGD. I took the family off of diary (to

> help get over the cold) and her pains in her stomach went away. Yea!!!

>

> I got to see and her family yesterday. n (who is 11 years old)

> and (3 1/2 years old) buddy-up and played together. *smiles*

>

> God Bless,

> Amy

> Mother to 3 1/2 years old / Andy 2 years old / Maddie 11 months old

[Guest guest]

All I can do is relate to you our experiences with stress and flares. In

February I had to rush off in the middle of the night because my mother

collapsed and was put on a ventilator. Our daughter is very close to her

grandmother, and a few days later n started into a terrible flare.

Also, when n has lots of tests during the week, we have observed that

her rash gets worse and she looks worse. This week she has no tests and she

looks great with minimal rash. We make sure she gets lots of rest, and we

try to keep her life slow paced as much as possible- at least until she goes

into remission. I hope recovers quickly and can get off the steroids

quickly.

Update on

>Well, 's most recent flare turned into a full fledged

>flare...anorexia, high fevers, pain throughout his entire body. He

>got to the point where he wasn't eating or drinking ANYTHING and all

>he wanted to do was sleep. That's when I realized we'd have to put

>him back on the steroids. He was totally against it (now that he's

>11 he worries about his appearance and remembers when he was 6 and

>other kids used to make fun of how chubby he was). Anyway, I called

>my PediRheum and told him we needed the steroids. It was almost

>miraculous the way he felt better the next day. He still has

>stiffness, but he's able to eat and drink and he even went outside

>and rode his bike the other day. What a joy!

>I do have a question in all of this.....

>I know it's been noted that stress can cause a flare. Two years ago

>'s dad and I separated. He didn't have a flare then. I left

> with his dad because I didn't want to change his life too

>much. He seemed to be doing fine until last week when his dad went

>on vacation with his new friend. came to stay with me and the

>very next night was when he started with the flare. Surprisingly

>enough, it was the day his dad came home that he started feeling

>better. (That was also the day after he started steroids)

>Coincidence? What does everyone think?

>

>

>------------------------------------------------------------------------

>Best friends, most artistic, class clown Find 'em here:

>1/4054/2/_/524922/_/958389542/

>------------------------------------------------------------------------

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

I was so saddened to read about 's recent flare. And then relieved

to hear that he was having some improvevmts and already starting to feel

much better. It's so hard to know what might have triggered this. Stress

definately seems to play a role, so it's possible that this last episode

was triggered by his anxiety or concerns about his Dad going away. Or

the accompanying change in daily eoutine. But it could have been related

to other things. Maybe he had contact with another child who had a viral

infection of some sort? Sometimes when Josh is exposed to people who are

sick, instead of just catching the cold from them it seems to develop

into a full range of JRA symptoms again. If he gets slightly sick, it

seems to predispose him to a flare up of more arthritis activity.

Hmmm ... it's so hard to know for sure. I'm just really glad that

started feeling better so quickly. Steroids are pretty powerful and

usually have quick results. Some people with long-term arthritis only

use them in just that sort of situation. If they're travelling or going

through some other type of stressful situation, the doctor will write a

prescription for maybe a week's medicine. Just in case. I know this

probably doesn't help answer your question but that's my thoughts.

Aloha,

Georgina

xycollxy@... wrote:

>

> Well, 's most recent flare turned into a full fledged

> flare...anorexia, high fevers, pain throughout his entire body. He

> got to the point where he wasn't eating or drinking ANYTHING and all

> he wanted to do was sleep. That's when I realized we'd have to put

> him back on the steroids. He was totally against it (now that he's

> 11 he worries about his appearance and remembers when he was 6 and

> other kids used to make fun of how chubby he was). Anyway, I called

> my PediRheum and told him we needed the steroids. It was almost

> miraculous the way he felt better the next day. He still has

> stiffness, but he's able to eat and drink and he even went outside

> and rode his bike the other day. What a joy!

> I do have a question in all of this.....

> I know it's been noted that stress can cause a flare. Two years ago

> 's dad and I separated. He didn't have a flare then. I left

> with his dad because I didn't want to change his life too

> much. He seemed to be doing fine until last week when his dad went

> on vacation with his new friend. came to stay with me and the

> very next night was when he started with the flare. Surprisingly

> enough, it was the day his dad came home that he started feeling

> better. (That was also the day after he started steroids)

> Coincidence? What does everyone think?

[Guest guest]

Hello everyone,

I haven't been on in awhile, but I just wanted to

say hello..and give you an update on . Well.. it's been 9 months and he

has been totally arthritis free...its like the arthritis left his body.. no

swelling, pain or fever...Last year he was in a flare basically for a

year...he constantly fought the pain and fevers, it was a balancing act

trying to control it with the prednisone..and then this September, September

6 to be exact! it all ended..and he is making up for lost years!!! He is

still playing little league and Friday night pitched and struck 3 kids out!!!

This has been his dream to pitch!!! so he was really excited!! They won the

game and he ran up to the chain linked fence (6ft. high) and climbed over

it!!! Everyone started clapping, they know how far has come!! They

remember him last year when he was so sick with the jra and could only sit on

the bleachers and watch..so he has a nice fan club on the bleachers that

cheer for him..everyone is so happy to see him feeling good..its nice to know

that people really care...The Dr. doesn't want me to get my hopes up, I keep

saying the jra is gone, but he said it could be a remission and to be

cautiously optimistic.. I know what he is saying but I just want to believe

it is over...He is down to 8 mg prednisone this month and then JUly WE GO

BACK FOR ANOTHER visit and will try alternate day preds which we never had

luck with before. I am almost afraid to try that I don't want to rock the

boat!! Well all for now, hoping and praying for all the kids and a cure for

JRA.. Jane

[Guest guest]

That is so great Jane hope all goes well..... he'll be in my prayers... Kris

[Guest guest]

Wonderful news. It is great to have hope, and see the light at the end of

the tunnel.

>From: Jitz45@...

>Reply- egroups

> egroups

>Subject: Re: Re: update on

>Date: Mon, 10 Jul 2000 18:44:57 EDT

>

> Hi All, glad to read quite a few of you recieved a scholarship to the

>jra

>conference! Thats great!! It will be interesting to hear about it...

>had

>his appt. today with pedi rheumy. He grew an inch and a half !!Hooray! He

>is

>4ft. 1 now.. He was so happy..The DR. said he looked great, took him off

>the

>nAPROSYN(HE HAS BEEN ON THIS EVERY DAY FOR 4 YEARS)and will taper down 1 mg

>prednisone every month, so now he will be on 7 mg prednisone and no

>methotrexate. He said to call in 2 months and that if he was doing fine

>wouldn't even have to see him. He said this could be the end of the Jra or

>just a long remission, no on knows...HE IS STILL A LITTLE CUSHIONOID as he

>is

>very sensitive to the steroids.so right now I am pretty happy just hope

>this

>lasts!! wishing all the kids and parents on the list the best! Jane

>

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>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

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[Guest guest]

Hi All, glad to read quite a few of you recieved a scholarship to the jra

conference! Thats great!! It will be interesting to hear about it... had

his appt. today with pedi rheumy. He grew an inch and a half !!Hooray! He is

4ft. 1 now.. He was so happy..The DR. said he looked great, took him off the

nAPROSYN(HE HAS BEEN ON THIS EVERY DAY FOR 4 YEARS)and will taper down 1 mg

prednisone every month, so now he will be on 7 mg prednisone and no

methotrexate. He said to call in 2 months and that if he was doing fine

wouldn't even have to see him. He said this could be the end of the Jra or

just a long remission, no on knows...HE IS STILL A LITTLE CUSHIONOID as he is

very sensitive to the steroids.so right now I am pretty happy just hope this

lasts!! wishing all the kids and parents on the list the best! Jane