Daughter with JRA

[Guest guest]

Hi-

Welcome to the group. Your story sounds very familiar. What's your

daughter's name? You said she probably has polyarticular jra. Has it moved

from her one knee to other joints now? What joints? My daughter, , now

21 mos., was diagnosed this summer. She's only been affected in her right

knee. Around the time she was diagnosed, she was unable to walk at all in

the mornings. I'm happy to say that, at the moment, she's doing great. She

jumps with weight on both legs. Went from a significant contracture to full

mobility. Her knee seems " normal. " This is all the result of a joint

injection she had a couple of months ago. She's also on Relafen. If she's

doing as well in a couple of months, we're going to try to take her off the

Relafen completely. I try not to get my hopes up too much, but it's very

encouraging. Prior to the injection, I wasn't feeling very positive about

anything working. So it all goes to show, things can change at any time (for

the better or the worse, but I like to focus on the better). Stay positive.

Diane

[Guest guest]

Hi! Welcome to the group. My son has had Polyarticular JRA

for more then 5 years. I remember what it is like to be where you

are now, it is a very difficult time. The good news is that it does

become easier as you understand JRA and get the right medications

for your child. Is the rheumatologist you are seeing a pediatric

Rheumatologist? Where do you live? What is your daughter's

name? There are lots of knowledgeable people here to help.

Jana

[Guest guest]

Hi everyone,

It is great to be part of this wonderful group. My 4 yr old daughter has

been diagnosed with JRA probably polyarticular just a month ago. She

started limping at first with her right knee which was very swollen but no

other symptoms. Her pediatrician thought it was some sort of bone injury

and referred her to as orthopidic. He couldn't figure out at first what was

going on since her bones seems normal. Later on, He said that this might be

a rheumatolgist issue. Pain and swelling from other joints start to appear.

The rheumatolgist has confirmed that it is JRA, gave her medicine just NSAID

Motrin to control the swelling and physical therapy because she can't walk

at this point. No DMRAID at this point, but the rheumatologist wants to see

her after two weeks to see if there is any improvemment.

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[Guest guest]

My little girl, samantha is 4 and just diagnosed as of aug, 2000. We went

from one joint to 8+ in a matter of weeks. Hopefully yours is not as

aggressive. We're on naprosyn and have had 6 joints injected with corisone.

She also has cataracts forming in both beautiful brown eyes. Having said all

that it may be helpful to have your daughter seen by an opthamologist for a

slit lamp exam. Information is power, read what you can and ask alot of

questions. You are all going to be just fine. Remember to kiss your baby two

times at night because her day was twice as hard as everbody elses'.

johanna

[Guest guest]

Sorry I omit my daughter's name in my previous e-mail. Her name is Hasna

and she just turned 4 last November. JRA had gotten into her 2 weeks before

her 4th birthday. She was diagnosed a month 1/2 after that. We already

have our first appointment with the Ped Rheum. assuring us that she will get

better. Right now, she doens't take any Med. except the NSAID Ibuprofene.

No fever (or may slight fever), but swelling in both knees with sever

contraction in her right knee disabling her from walking. Rheum.

indentified the other joints as here right wrist, shoulder, 2 fingers, and

neck. I have been educating myself heavily about JRA in order to make this

desease as easy as possible for all of us. Latest updates on her are the

starting of Physical Therapy for her to walk. In one day we saw great

improvement. I will make an appointment with an ophtalmologist to check her

eyes. On Ibuprofene only, but no other medication. I will update on her

condition as time goes by.

Thank you for your support.

>From: jjandsammy@...

>Reply- egroups

> egroups

>Subject: Re: Daughter with JRA

>Date: Wed, 17 Jan 2001 23:33:06 EST

>

>My little girl, samantha is 4 and just diagnosed as of aug, 2000. We went

>from one joint to 8+ in a matter of weeks. Hopefully yours is not as

>aggressive. We're on naprosyn and have had 6 joints injected with corisone.

>She also has cataracts forming in both beautiful brown eyes. Having said

>all

>that it may be helpful to have your daughter seen by an opthamologist for a

>slit lamp exam. Information is power, read what you can and ask alot of

>questions. You are all going to be just fine. Remember to kiss your baby

>two

>times at night because her day was twice as hard as everbody elses'.

>johanna

>

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[Guest guest]

Hi Hisham-

My daughter was in the same situation when she was 17 months old. Now she is

4 1/2. Her conditon went undiagnosed for 3 -4 months until the Orthopedic dr

said to take her to a rhuematalogist. She was initially put on motrin, and

then Naprosyn as well. But the greatest improvement came when she was put on

prednisone (steroids)and she was on it for 6 months. Along with the

prednison, the dr had put her on 5mg of Methotrexate. So, if your daughter

is not responding well to the NSAIDS, may be you should mention it to the dr

before it becomes more painful and debilitating. Also, in the case of Poly

or Pauci articular JRA, you should defenitely check her eyes out for

inflamation. My daughters eyes were quiet the 1st year, and as her joints

started quieting down, her eyes became inflamed. Everything is under

control now. In fact, she is off of all kinds of medications. Recently, we

found out that her left eye has slight inflamation. So she is back on the

predforte (cortison) drops again. But thank God, everything else is okay.

This is a challenging and sneaky disease. The main thing is to get it under

control as soon as you can and treat it aggressively. I wish you all the

best and hope Hasna gets well quickly. Welcome to our group.

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[Guest guest]

sorry to hear about your daughter.....hopefully as bad as it is,,,,is

at bad as it gets. Good Luck...I'm sure you will continue to find

encouragement on this site....even when the news is bad...you will

hear from others who will keep you positive.

> Hi everyone,

> It is great to be part of this wonderful group. My 4 yr old

daughter has

> been diagnosed with JRA probably polyarticular just a month ago.

She

> started limping at first with her right knee which was very swollen

but no

> other symptoms. Her pediatrician thought it was some sort of bone

injury

> and referred her to as orthopidic. He couldn't figure out at first

what was

> going on since her bones seems normal. Later on, He said that this

might be

> a rheumatolgist issue. Pain and swelling from other joints start

to appear.

> The rheumatolgist has confirmed that it is JRA, gave her medicine

just NSAID

> Motrin to control the swelling and physical therapy because she

can't walk

> at this point. No DMRAID at this point, but the rheumatologist

wants to see

> her after two weeks to see if there is any improvemment.

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Afsi,

It was so nice to hear that your little girl is continuing to do well

And still basically med-free. It is strange how often times the

inflammation affects one's eyes when the joint inflammation settles

down. Just when you think everything is looking good again I hope

those eye drops are helping to get her eye inflammation under control.

Josh is still taking eye drops too, to try to clear up his

conjunctivitis. It looked almost totally better this morning, so it will

be just two more days. Lasted over a week, though.

Well, it was great to hear from you again.

Stay well,

Georgina

afsi goodarzpoor wrote:

>

> Hi Hisham-

>

> My daughter was in the same situation when she was 17 months old. Now she is

> 4 1/2. Her conditon went undiagnosed for 3 -4 months until the Orthopedic dr

> said to take her to a rhuematalogist. She was initially put on motrin, and

> then Naprosyn as well. But the greatest improvement came when she was put on

> prednisone (steroids)and she was on it for 6 months. Along with the

> prednison, the dr had put her on 5mg of Methotrexate. So, if your daughter

> is not responding well to the NSAIDS, may be you should mention it to the dr

> before it becomes more painful and debilitating. Also, in the case of Poly

> or Pauci articular JRA, you should defenitely check her eyes out for

> inflamation. My daughters eyes were quiet the 1st year, and as her joints

> started quieting down, her eyes became inflamed. Everything is under

> control now. In fact, she is off of all kinds of medications. Recently, we

> found out that her left eye has slight inflamation. So she is back on the

> predforte (cortison) drops again. But thank God, everything else is okay.

> This is a challenging and sneaky disease. The main thing is to get it under

> control as soon as you can and treat it aggressively. I wish you all the

> best and hope Hasna gets well quickly. Welcome to our group.

[Guest guest]

Hi Diane,

Thanks for this message. These words are so simple but so very true.

You're right. Sometimes I almost forget. Patience. Focus on the

positive. Things can change at any time and actually get better. Yes, I

think this will become my mantra for the day (or week!)

Take care,

Georgina

dbornscheu@... wrote:

I try not to get my hopes up too much, but it's very

> encouraging. Prior to the injection, I wasn't feeling very positive about

> anything working. So it all goes to show, things can change at any time (for

> the better or the worse, but I like to focus on the better). Stay positive.

>

> Diane

[Guest guest]

I am glad you have found this group. They have a lot of knowledge to

offer. My child is 10 and we are still in the diagnosis faze.

I know how you feel about the disease going on much longer than the

diagnosis. There have been problems for many years with my child;

however, since she is hyperactive it masked from the Dr. the real

problems. I think all of use have been in the state of wonder of if

our Dr. were doing the right thing. I am still in that state;

however, it has been my experience that there are just not that many

Ped Rheumy.

You have come to the right place; this group is very good for leaning

on for support and information.

Jeanine

[Guest guest]

Welcome to the group. I have been out of town this last week, so I don't know quite what has been said lately. I had so many email that I just had to delete them all. I have a 15 year old daughter with systemic jra. She has had it since she was 10. We have had some problems with sports and activities. We have found that sometimes the fatigue is the worse. She will go to school and come home tired and not able to go to three more hours of dance. She did join the track team this year and the school is working with us about the practices. n can't do all of the running and training, so they have modified her training. She does high jump and that is all, but she jumps well. She made varsity as a freshmen, and just took first place at the first meet. This might not be a big thing to some people, but when you see your child suffer and then do something like that, we were as proud as could be. It helped her self confidence as well.

n had to go on steroids in February again, and I try to taper as quickly as I can to a lower dose. The side effects are bad, but to put them onto a teenager is horrible. When we get down below 10mg, we find the bloating and stuff goes away. She is on 5.5mg now. I am going down by 1/2 mg every week or so. The first few days are hard, so I try to work around her extracurricular schedule. Let me know if your daughter wants to talk to n. (n, 15, systemic)

Daughter with JRA

Hi, my daughter was diagnosed this last fall with polyarticular JRA. I have to wonder because she was 15 almost 16 years old. It is now in her fingers and neck. There has been pain in a few other places also. She has always played most sports all her life. That is why they think it took this long to really show up this late. For several years she was always diagnosed with pulled neck muscles from her sports. It was not until her fingers doubled in size that they did testing. She still plays on the varsity high school basketball team. She is taking Methotrexate, Vioxx,Prednisone and folic acid. All the meds have really slowed her down. She thinks the medications make her feel worse than the disease. Plus, all the meds do not seem to be working. She is being seen at Riley's Hospital in Indianapolis. Her doctor is considering adding Enbrel. I am not sure we should not possibly go somewhere else. I also would like to know if anyone's child is a teen with it. This is a horrible age to be diagnosed at. She is so self conscience of her hands, and the steroids making her gain weight. Everytime we try to back off the steroids, her fingers get out of control. They have talked of injecting her fingers, but the doctor is not sure this will help because the joints are pencil thin at the top and from the middle down very enlarged. She just tries to hide her hands all the time. On the up side, she did win the MVP Offensive award in basketball this year. She will be devastated if this was her last year to play. She already had to drop out of Volleyball and Softball. Thanks for your help.

[Guest guest]

-HI..

and welcome to the group.. I hope you feel as " at home " here as I do.

My son is only 6 and systemic, but I know what its like having

teenagers and I feel for having something else now to deal

with. its just not fair at any age really.

I think it pretty typical that the kids of any age dont always like

mom checking out their joints and they hide things. All part of

the " im ok syndrome " My Nick had a fit when we talked about telling

his class what was wrong with him ( accomadations in school so the

kids were begining to ask questions) Nick didnt want anyone to know.

We are still working with him to let the teachers know when he is

hurting. He always pretends all is ok and his teacher is having to

read his body language, Fatigue has been a big issue with .

Since did the local JAM walk a month ago, he now realises

hes not alone in this. He saw other children all with JRA and is much

more comfortable with his condition. he wears his t-shirt he got with

pride to school nearly every week. I think getting your daughter

involved and talking with others her age will help her.

I hope they find the right cocktails of meds for her and she can

continue with her sports. ITs always so tough in the beginning, but

does get easier ))

hugs Helen, mom to (6,systemic)

-- In , " cja417 " <CjA417@a...> wrote:

> Hi, my daughter was diagnosed this last fall with polyarticular

JRA.

> I have to wonder because she was 15 almost 16 years old. It is now

in

> her fingers and neck. There has been pain in a few other places

also.

> She has always played most sports all her life. That is why they

> think it took this long to really show up this late. For several

> years she was always diagnosed with pulled neck muscles from her

> sports. It was not until her fingers doubled in size that they did

> testing. She still plays on the varsity high school basketball

team.

> She is taking Methotrexate, Vioxx,Prednisone and folic acid. All

the

> meds have really slowed her down. She thinks the medications make

her

> feel worse than the disease. Plus, all the meds do not seem to be

> working. She is being seen at Riley's Hospital in Indianapolis. Her

> doctor is considering adding Enbrel. I am not sure we should not

> possibly go somewhere else. I also would like to know if anyone's

> child is a teen with it. This is a horrible age to be diagnosed at.

> She is so self conscience of her hands, and the steroids making her

> gain weight. Everytime we try to back off the steroids, her fingers

> get out of control. They have talked of injecting her fingers, but

> the doctor is not sure this will help because the joints are pencil

> thin at the top and from the middle down very enlarged. She just

> tries to hide her hands all the time. On the up side, she did win

the

> MVP Offensive award in basketball this year. She will be devastated

> if this was her last year to play. She already had to drop out of

> Volleyball and Softball. Thanks for your help.

[Guest guest]

Thanks everyone for your support.