Re: Digest Number 204

September 23, 1999

I think so I am not a doctor but from what I have read in here and what I

have looked up else where it seems to me that every child is different and

every case is different> When my daughter first got jra she never had,had a

symptom befour ,and they said to watch for jaw pain in the begining she nevr

got that then,and still has never had a problem her pain is almost always in

her feet ,but she can get it in her hip her back any where there has never

been a pattern for when she first got sick it was even in her muscles

>I would get a second opion if you can if for nothing else to put your self

at reast

>From: " c cleaver " <ccleaver@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Digest Number 204

>Date: Thu, 23 Sep 1999 11:18:41 GMT

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>From: " c cleaver " <ccleaver@...>

>

>Hello!

> My son was taken off all medication two months ago

>(methotrexate,voltarol,folic acid) to " see " how he went without it. At the

>time of taking him off he had not had a major flare in his usual knee joint

>for a few months, but he had had a couple in his other knee joint and also

>had begun to experience pain and stiffness in his wrists and ankles. I

>could`nt understand the doctor wanting to withdraw meds, and although i

>explained to him about the other pains my son was getting in other joints,

>he seemed to dismiss this as part of the arthritis. He said my son was not

>following the pattern of JRA as ankle and wrist pains do not follow in a

>child who to date has only suffered major flares in the knee. I am not sure

>about this. Reading posts on this list i see that other children get pains

>in their other joints, since when was JRA limited to one joint? I am

>certain

>that it effects many other multiple joints as well. I don`t understand this

>doctor.

>My son is now having a major flare in his ankle joint. It has been like

>this

>now for a week. He is taking predisilone and pain killers, but he is still

>showing no sign of improvement. If he does not respond to the steroids he

>has to go back on methotrexate. If he does, then this will be put down as

>an

>isolated case, possibly not even connected to the arthritis. I really do

>not

>know what to think any more. Common sense tells me that my sons JRA is

>getting worse and the " pattern " changing. The doctor tells me what is

>happening is not within the normal run of things for JRA. I am so confused.

>My son is in constant pain, cannot walk very well as weight bearing is so

>painful for him. Its so tough for him, he is even asking today if he can go

>into hospital! Can anyone relate to what i have described about my sons

>condition? It is possible is`nt it that a pattern can change?

> Thanks for listening,

> carol

>

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

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

September 23, 1999

Dear Carol,

My daughter, Grace, who is five, began with knee pain which settled into her

left wrist, fingers and both ankles. She has been on MTX for six months now

and is doing rather well at the moment. As far as I can tell, it's the MTX

that did the trick. It can't hurt to get another opinion -- especially if

your child is in pain. I haven't been keeping up with all the messages lately

.... is this doctor a pediatrician or a pediatric rheumatologist?

N.

September 23, 1999

Hello!

My son was taken off all medication two months ago

(methotrexate,voltarol,folic acid) to " see " how he went without it. At the

time of taking him off he had not had a major flare in his usual knee joint

for a few months, but he had had a couple in his other knee joint and also

had begun to experience pain and stiffness in his wrists and ankles. I

could`nt understand the doctor wanting to withdraw meds, and although i

explained to him about the other pains my son was getting in other joints,

he seemed to dismiss this as part of the arthritis. He said my son was not

following the pattern of JRA as ankle and wrist pains do not follow in a

child who to date has only suffered major flares in the knee. I am not sure

about this. Reading posts on this list i see that other children get pains

in their other joints, since when was JRA limited to one joint? I am certain

that it effects many other multiple joints as well. I don`t understand this

doctor.

My son is now having a major flare in his ankle joint. It has been like this

now for a week. He is taking predisilone and pain killers, but he is still

showing no sign of improvement. If he does not respond to the steroids he

has to go back on methotrexate. If he does, then this will be put down as an

isolated case, possibly not even connected to the arthritis. I really do not

know what to think any more. Common sense tells me that my sons JRA is

getting worse and the " pattern " changing. The doctor tells me what is

happening is not within the normal run of things for JRA. I am so confused.

My son is in constant pain, cannot walk very well as weight bearing is so

painful for him. Its so tough for him, he is even asking today if he can go

into hospital! Can anyone relate to what i have described about my sons

condition? It is possible is`nt it that a pattern can change?

Thanks for listening,

carol

September 23, 1999

Carol,

I'm not a qualified physician, but this is rather strange - it sounds like

the Doctor is experimenting on your child, and causing him even more pain in

doing so? As you are probably aware, JRA has three forms - see

http://www.arthritis.org/ajao/tellmemore/types.asp for details. My son has

the systemic variant and has suffered pain in his neck, wrists, knees, hips,

ankles, fingers etc to varying degrees. I would not consider JRA to be

static at all.

Furthermore, I would probably be in a majority if I said that most of us

parents would by far prefer our kids had a pain-free existence with MTX

rather than taking prednisolone which has some very unpleasant side-effects.

I suggest that you try to get another opinion elsewhere.

Good Luck and Best Wishes

Oliver

> Re: [ ] Digest Number 204

>

> From: " c cleaver " <ccleaver@...>

>

> Hello!

> My son was taken off all medication two months ago

> (methotrexate,voltarol,folic acid) to " see " how he went without it. At the

>

> time of taking him off he had not had a major flare in his usual knee

> joint

> for a few months, but he had had a couple in his other knee joint and also

>

> had begun to experience pain and stiffness in his wrists and ankles. I

> could`nt understand the doctor wanting to withdraw meds, and although i

> explained to him about the other pains my son was getting in other joints,

>

> he seemed to dismiss this as part of the arthritis. He said my son was not

>

> following the pattern of JRA as ankle and wrist pains do not follow in a

> child who to date has only suffered major flares in the knee. I am not

> sure

> about this. Reading posts on this list i see that other children get pains

>

> in their other joints, since when was JRA limited to one joint? I am

> certain

> that it effects many other multiple joints as well. I don`t understand

> this

> doctor.

> My son is now having a major flare in his ankle joint. It has been like

> this

> now for a week. He is taking predisilone and pain killers, but he is still

>

> showing no sign of improvement. If he does not respond to the steroids he

> has to go back on methotrexate. If he does, then this will be put down as

> an

> isolated case, possibly not even connected to the arthritis. I really do

> not

> know what to think any more. Common sense tells me that my sons JRA is

> getting worse and the " pattern " changing. The doctor tells me what is

> happening is not within the normal run of things for JRA. I am so

> confused.

> My son is in constant pain, cannot walk very well as weight bearing is so

> painful for him. Its so tough for him, he is even asking today if he can

> go

> into hospital! Can anyone relate to what i have described about my sons

> condition? It is possible is`nt it that a pattern can change?

> Thanks for listening,

> carol

>

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

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

September 23, 1999

when first started with methotrexate it took almost three months

befour it started to work and then they increased it befour we saw any real

changes but than they started to decreas her pred with good effect hang in

there I hope it works out for you !!!!!

ou

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

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>< onelist>

>Subject: Re: [ ] Digest Number 204

>Date: Thu, 23 Sep 1999 15:27:58 -0500

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

>

>Hi Afsi,

>

>Mandy was first diagnosed with pauciarticular, because it was only

>affecting

>her knee..... As she got older, it seemed to hit other joints, and now she

>is considered poly articular....as it affects more than 4 joints. (Hope I

>didn't get it backwards) She started off on Naprosyn. It worked for a

>little

>while, about a year, and then she flared up again. She had to sleep with

>velcro casts on her legs, to help straighten them.... As of today, she is

>on

>Toleton, Plaquenil, and Methotrexate. I have waited for about six weeks for

>the MTX to work. She also went through periods when she did not seem to be

>affected at all. So, as you see, it is kind of a rollercoaster ride. Mandy

>has had it for so long though, it has made her a strong person. She is more

>compassionate towards others. Mandy is only on 2.5 mg. of MTX. We will just

>have to wait and see.....If you have anymore questions, I would be more

>than

>happy to write back. Janet

>

> Re: [ ] Digest Number 204

> >

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

> >

> > Hi Carol,

> >

> > My daughter Mandy was diagnosed when she was 18 months old, with JRA. At

> > that time, it was process of elimination.... She had one swollen knee,

>and

> > they did not know why..... The doctor tested her for cancer, etc. He had

>no

> > patience with her, because everytime he pulled on her leg, she cried...

>I

> > said enough is enough, and took her to Children's Hospital in

>Philadelphia.

> > That is when they said she had JRA. She has it now in her knees, ankles,

> > wrists, elbows. Every child is different though. Your child may only get

>it

> > in one or two joints. Also, I have found that every medicine out there,

> > works different for each individual child. Mandy is now 12, and has been

>on

> > many different medicines over the years, but I think we finally found

>the

> > right one. Also, she has gone into remission throughout her life, where

>I

> > thought she was growing out of it. Some kids do grow out of it, but she

> > isn't one of them. I remember one time taking her off of her meds,

>because

>I

> > thought they would damage her in years to come. She flared up so bad, it

> > scared me to death. I won't do that again. She is a synchronized

>swimmer,

> > and the doctor thinks that is wonderful, as water does not put strain on

>her

> > joints.....very good therapy. Good luck to you, and God bless, Janet

>Moyer

> >

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

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

> >

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

>arthritis:

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

>

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

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

September 23, 1999

Dear Janet:

My daughter Sara (3 years now), was also 18 months when she was diagnosed with

polyarticular JRA. Which type does Mandy have? How long did it take for her to

get under proper care? What medicines did she start with? It seems (from your

note) that it might have taken a long time. It also took us 4 months to get

Sara diagnosed. All the pediatricians thought she had behaviroal problem since

she didn't want to walk or play. What meds is Mandy on? I saw her picture and

she seems like a beautiful and sweet girl. Sara is on MTX (5mg per/week). One

of her rheumatologists wants her off of it and the one doesn't. I am confused

and don't know what to do? God bless you all & good luck....

" Janet & Gilbert Moyer " <gjam@...> on 09/23/99 02:46:22 PM

Please respond to onelist

onelist

cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes)

Subject: Re: [ ] Digest Number 204

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

Hi Carol,

My daughter Mandy was diagnosed when she was 18 months old, with JRA. At

that time, it was process of elimination.... She had one swollen knee, and

they did not know why..... The doctor tested her for cancer, etc. He had no

patience with her, because everytime he pulled on her leg, she cried... I

said enough is enough, and took her to Children's Hospital in Philadelphia.

That is when they said she had JRA. She has it now in her knees, ankles,

wrists, elbows. Every child is different though. Your child may only get it

in one or two joints. Also, I have found that every medicine out there,

works different for each individual child. Mandy is now 12, and has been on

many different medicines over the years, but I think we finally found the

right one. Also, she has gone into remission throughout her life, where I

thought she was growing out of it. Some kids do grow out of it, but she

isn't one of them. I remember one time taking her off of her meds, because I

thought they would damage her in years to come. She flared up so bad, it

scared me to death. I won't do that again. She is a synchronized swimmer,

and the doctor thinks that is wonderful, as water does not put strain on her

joints.....very good therapy. Good luck to you, and God bless, Janet Moyer

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

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

September 23, 1999