Re: New to systemic JRA

[Guest guest]

Christi - Our daughter became ill on Feb 27, 2004. She ran a fever of at

least 102 or highter daily until May 7, 2004. She was also fatigued with rash

daily. The joint pain was mainly in her neck. You will find that even though

our children have the same diagnosis - each one is somewhat different. With

starting the methotrexate - it could take up to three months to see benefits.

Hunter has been on it since May and we still can't get her off the orapred.

We just take everyday very slowly. Try warm bath in AM and do some movement

if he can. In the beginning I tried to protect Hunter and thought she should

not move at all. I have learned to try to keep her going. It sounds like your

son is still in the systemic phrase of the disease hopefully he will start

feeling better in a few weeks. Sandi Ken Hunter (Systemic 6)

[Guest guest]

Dear Christi, Welcome to the group, and I am sorry that you have to be

here. This is a great place to get info, just ask any question you have.

You might find support groups through your local Arthritis Foundation

chapter if you have one in your area. There is a yearly convention(AJAO)

American Juvenile Arthritis Organization, that is fantastic. Next summer it

is in Rhode Island. They take your children at all ages and entertain them,

while the parents go to seminars on the disease. There are scholarships

available thru the local Arthritis Foundation chapters if money is an issue.

They are planned over a weekend.

The beginning of the disease can really be tough. It sounds like you got a

pretty quick diagnosis. Each child has their drug cocktail that works for

them, and it takes trial and error to find it. The goal is remission of

course, and if that is not possible, then you want your child to be pain

free and living as normal a life as possible. Establish a good relationship

with your rheumy and don't be afraid to call him or her if your child is in

too much pain. You don't need to wait until appts. Keep a diary of

symptoms, meds, rashes , etc. It will come in handy now and in the future.

Our daughter has had systemic jra for five years now. She still flares at

times and the road can get bumpy, but then we have to jump on the disease

and put the fire out. This requires tweaking her meds. She lives a pretty

normal life, and she has learned if she plays too hard-she may pay for it

the next day or two. She goes to high school, participates socially,

dances, and high jumps in track. Your child will be able to live a normal

life(with possibly a few adjustments). Good luck. (n, 15,

systemic)

New to systemic JRA

> Hello! My three year old son has been diagnosed with systemic JRA.

> He has only been sick for a little over 5 weeks. He started with a

> rash, then fever, then joint pain. He finally got to the point he

> could not walk, sit up, etc. About a week and a half into this our

> Ped talked to a ped. rheumatoligist. They thought it was either a

> virus or JRA. They put him on Naproxen. This did not help and it

> really hurt his stomach. He started this on a Saturday by Thursday

> he cold not get out of the bed. His med. was changed to nabumetone.

> This seemed to help his arms and hands a little but not his legs. We

> got to see the ped rheum. on the following Monday (three weeks since

> first symptoms). He wanted to start him on Orapred but had to test

> for other things first. They ended up having to check his bone

> marrow for leukemia. He did not have leukemia so we started the

> Orapred. We were to give 1 tsp in AM and 1 tsp in PM of Orapred for

> 7 days and then start lowering the dosage. We were not able to

> decrease as much as doctor had originally prescribed. He is

> currently on 1 tsp in the am and 1/2 tsp in the pm. We saw the Ped.

> Rheum. this past Tuesday (two weeks since first visit) He thought his

> progress was good but he put him on Methotrexate. I call next

> Tuesday to give a report on his progress. We see the doctor again in

> a month. He thought we should see a PT and an OT and we have get

> routine bloodwork done because of the Methotrexate.

> Well, I guess this all sounds familiar to many of you. We are a bit

> overwhelmed. It seems that everytime we think he is doing better he

> ends up with a fever and doing worse. He played outside yesterday

> for just a short while ( tried to run a little) and then that night

> his fever was back. It had been about four days since he had had a

> fever. Also, after a few O.K. days I thought we would try to see if

> he could go to preschool. He went for only a short time. The rest

> of the day he had a fever, rash, pain. It just seems like he can not

> really do anything but play a little in the house and rest or he gets

> to feeling much worse. Is this how it is for some of your children?

> His birthday is in two weeks. I am thinking that we can not even

> plan a party to inlcude other children because we do not know how he

> will be feeling? Any suggestions? I guess I have written too much

> but thought if I was going to participate I would fill everyone in on

> where we are in this process. I have read some of your emails and

> seen where you have gone to conventions, meetings, etc on JRA. How

> do you find out about these types of programs? I would appreciate

> any info and or advice.

>

> Thanks,

> Christi

>

>

>

>

>

>

>

[Guest guest]

Dear Christi,

I just wrote a really long reply to you and lost it - & ^%%% & & !!!

Anyway, let's try again. Many of us on this list have systemic

children and we have all been exactly where you are today. The lost

and hopelessness feelings, the wishing you had this disease instead

of your child, the wondering of what it is that happened to your

child to cause this, the guilt, the denial, the not knowing where to

turn or who to talk to, etc. etc. We all still have questions no

matter how long we've been dealing with this. Well, education will

take you far and you are obviously reaching out for that. You found

the right place and I'm sorry to say, welcome.

If you haven't already done so, go to the Arthritis Foundation web

site and read everything. Look for the AJAO stuff (american

juvenile arthritis org.). There are also some really helpful

pamphlets you can order for free from the AF and they may even be in

printable format on the web (I haven't looked lately). Some of the

pamphlets are good to give to teachers, others detail all the common

drugs used for JRA. Call your local chapter and join. Sign up for

all newsletter you can, especially one called Kids Get Arthritis

Too. Geogina has a web page that provides a ton of links to other

pertinent JA site. Here is her page:

http://www.geocities.com/gmckin/JRALinks.html

Ask you rheumy for any support group information. Several of us on

the list here have started our own local support groups. Donna, on

this list, actually prints a newsletter that I'm sure she'd be happy

to add your name to. She has another web page with lots of helpful

links -- http://www.calky.org/faces/links.htm

You are not alone and we are all here for you. Each of us has a

unique story, although the commonalities are huge. MTX is a very

typical starting point for systemics. The good news is that there

are many other choices if that one doesn't pan out. You seem to be

in good hands and with a doctor taking the right aggressive

approach. Research is telling us that the more aggressive and early

the treatment, the higher liklihood of better outcomes.

As you know, getting a diagnosis of JRA is a process (quick for some

and long for others). Treatment can also be a process as you find

the right drug or drugs that has the best positive effect for your

child and can take time. Mtx can take from 3 weeks to 3 months

before you know it's effectiveness. Almost every child here has

been on prednisone of some sort for some period of time. There's a

lot to learn about that drug also. I call it the " making a deal

with the devil " drug. Highly effective and highly damaging

(potentially, not always). I'm not trying to scare you about

prednisone, but the more you know about it the better you'll be able

to make the best choices for your situation.

My son was also 3 when our saga began. He had 106 fevers, rashes,

enlarged liver and spleen, and GI issues. He also had the lovely

bone marrow analysis. It took 3 1/2 years for diagnosis, but that

is nowhere near the norm. His aganizing joint pain just didn't come

for 3 1/2 years but all the other systemic stuff was there. His JRA

has been under control for about 6 months. He was on prednisone for

almost a year (we were able to get him off the last dose just a few

weeks ago). It took the oral mtx. about 7 weeks to have any

affect. Then we bumped it up to the liquid squirted into juice for

a few months. Then we started with the injections and that did the

trick. To watch and observe my son today, you would never know he

has JRA or iritis. He plays sports and runs around like any other 8

year old. I hope and pray that your son gets there soon. I hope

you can figure out a way to make his birthday celebration a success.

We are always here for you.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Christi,

It pains me to write another welcome - because it means another child is

fighting arthritis, but welcome. Your post particularly touched me because me

son was 3 when he was diagnosed, a couple of months before his 4th birthday. I

saw good responses to your questions - so I will try not to repeat those. I

hope the Methotrexate does the trick, and that you are able to taper the pred

successfully. With the fever and rash it may take awhile for a successful

taper. My son will be 7 in two weeks - and we have been up and down the JRA

roller coaster. I pray for you a smoother ride. At first it is so very

overwhelming - but it sounds like your son's doctor is treating it aggressively

- which is best. There is no way to predict how the next couple of weeks will

go. I am planning my son's birthday party now, and I enjoy that so much. Maybe

over the next few days you can see if your son is improving to decide about the

party. I kept Robbie's 4th birthday party quite small - more due to his age,

than due to any illness - he was pretty stable on his medication by the time his

party came around (though I have a hard time looking at his " michelin man "

pictures from the party. But you may be able to tell what the best time of day

would be for him to be feeling his best - plan a small celebration for that time

of day, with one or two friends, or just immediate family. I wouldn't plan

anything elaborate that would over tire him - be prepared to be flexible - and

to just let it go if need be - and warn any you might invite that he may not be

up for it after all. I don't know if this helps any. I hope that you see a big

improvement soon.

Val

Rob's Mom (6,systemic)

In a message dated 9/18/2004 8:23:00 AM Eastern Daylight Time, " hudlind "

<hudlind@...> writes:

>Hello!  My three year old son has been diagnosed with systemic JRA.  

>He has only been sick for a little over 5 weeks.  He started with a

>rash, then fever, then joint pain.  He finally got to the point he

>could not walk, sit up, etc.  About a week and a half into this our

>Ped talked to a ped. rheumatoligist.  They thought it was either a

>virus or JRA.  They put him on Naproxen.  This did not help and it

>really hurt his stomach.  He started this on a Saturday by Thursday

>he cold not get out of the bed. His med. was changed to nabumetone.  

>This seemed to help his arms and hands a little but not his legs. We

>got to see the ped rheum. on the following Monday (three weeks since

>first symptoms).  He wanted to start him on Orapred but had to test

>for other things first.  They ended up having to check his bone

>marrow for leukemia.  He did not have leukemia so we started the

>Orapred.  We were to give  1 tsp in AM and 1 tsp in PM of Orapred for

>7 days and then start lowering the dosage.  We were not able to

>decrease as much as doctor had originally prescribed.  He is

>currently on 1 tsp in the am and 1/2 tsp in the pm.  We saw the Ped.

>Rheum. this past Tuesday (two weeks since first visit) He thought his

>progress was good but he put him on Methotrexate.  I call next

>Tuesday to give a report on his progress.  We see the doctor again in

>a month.  He thought we should see a PT and an OT and we have get

>routine bloodwork done because of the Methotrexate.  

>Well, I guess this all sounds familiar to many of you.  We are a bit

>overwhelmed.  It seems that everytime we think he is doing better he

>ends up with a fever and doing worse.  He played outside yesterday

>for just a short while ( tried to run a little) and then that night

>his fever was back.  It had been about four days since he had had a

>fever.  Also, after a few O.K. days I thought we would try to see if

>he could go to preschool.  He went for only a short time.  The rest

>of the day he had a fever, rash, pain.  It just seems like he can not

>really do anything but play a little in the house and rest or he gets

>to feeling much worse.  Is this how it is for some of your children?  

>His birthday is in two weeks.  I am thinking that we can not even

>plan a party to inlcude other children because we do not know how he

>will be feeling?  Any suggestions?  I guess I have written too much

>but thought if I was going to participate I would fill everyone in on

>where we are in this process.  I have read some of your emails and

>seen where you have gone to conventions, meetings, etc on JRA.  How

>do you find out about these types of programs?  I would appreciate

>any info and or advice.

>

>Thanks,

>Christi

>

>

>

>

>

>

>

[Guest guest]

Hi Christi:

I have seen quite a few wonderful replies for you from many on the list, so I

won't repeat those. I did want to say welcome (although we all wish there

was no need for this list). You will find compassion, support and a wealth of

knowledge here. Ask any and all questions. I asked a ton and always got a

response. It's a scary time, we understand, as we have all experienced it. It

can get better.

My daughter, Caitlin, started out with fever (105), rash, fatigue, joint pain

(she couldn't walk), sore throat. She was hospitalized, had every test under

the sun done (including the bone marrow biopsy, the day before Christmas) and

missed almost 3 months of school. She first became ill mid November of 2003.

She went on Prednisone, Plaquenil, MTX, Cefzil and Folic Acid (few others

were tried, but she didn't tolerate them at all). In February/March she started

experiencing headaches and losing her hair and it was decided that since she

was doing so well to take her off all meds but Cefzil and see how she did. I

am thrilled to say she did remarkably well. She has done great until a week

and a half ago when she developed a rash. The question was was it an allergic

reaction to a med (yeast infection), a new reaction to the Cefzil or the nasty

Still's rash. After a few visits to the pediatrician and one to the rheumy,

the rheumy thought it was an allergic reaction. So we got a new plan of

action. Starting with taking her off the Cefzil. This was Thursday. By

yesterday

morning the rash was so much better. She will have labs drawn in two weeks

to check if anything is brewing. I am praying that it was just an allergic

reaction and she is still in clinical remission.

I hope your little one can get pain, fever and rash free quickly. What is

your son's name? Perhaps you could invite a few of his close friends and tell

the parents beforehand that you might have to cancel or cut it short at the

last minute. Maybe just family can take him to a fun movie (not sure if

anything

is out for little ones). Does he like stuffed animals? You could take him

to one of those make a bear places. I hope he is feeling well enough to enjoy

his day. If he just isn't up to celebrating, maybe you could do a later

celebration with friends when he's feeling better and just keep the true day to

you

and your husband.

Take care.

Patty