New to the list

[Guest guest]

I just found this list... I can't believe it took me so long or that

it is so active. My daughter was finally diagnosed with JRA in July.

We are VERY lucky to have a pediatric rheumatologist in our town.

a has had knee pain on and off for years. We were originally told

that they were " growing pains " . Last October she was having so much

back, neck and shoulder pain that she missed over a week of school.

November and December weren't much better. She first saw the ped.

rheum. in November (on her tenth birthday). She did some blood work

(which ahs all been negative) and put her Naproxen and by the end of

January everything was great. Not realizing what was going on we took

her off the Naproxen thinking whatever she " had " was better. Then it

started all over in May. We got her back in to see the Dr. and were

basically told that she needed to be back on the Naproxen long term.

She has been back on the Naproxen long term since then and we finally

got the JRA diagnosis in July. She does good for a while and then has

a bad week. We basically let her whatever she feels up to. She

definitely pushes herself, sometimes too much.

Lately she has had itchy bumps on her scalp and she has been getting

sores in her mouth. She also just showed me that she has ridges on

her fingernails. Has anyone else experienced this. I don't know if

it's JRA related or something different.

Thank you!

Billie-jo

[Guest guest]

showed me that she has ridges on

her fingernai

          Hi, that little statement right there is a VERY powerful one.Report it

to the ped rheumy ASAP!!!!  You may have your real first symptom of a type of JA

called Psoriatic Arthritis.

The skin condition has not happened yet which is very common.The diagnosos

starts out very vague,looking more like pauci (fewer then 4 joints) and only

young girls truly get.It can and will effect joints,tendons,ligaments,etc but

early on there is not much if any swelling,just pain  and tenderness.Thats even

up to the person and how far the disease has progressed.

   Treatment has come so FAR in the last decade there is every hope that your

child spends most of it symptom free. If they dismiss the ridges in the nails it

is time to drive for a second opinion  and you bet we can help.

 

From: thejarys <Beamjary@...>

Sent: Saturday, January 31, 2009 2:52:45 PM

Subject: New to the list

I just found this list... I can't believe it took me so long or that

it is so active. My daughter was finally diagnosed with JRA in July.

We are VERY lucky to have a pediatric rheumatologist in our town.

a has had knee pain on and off for years. We were originally told

that they were " growing pains " . Last October she was having so much

back, neck and shoulder pain that she missed over a week of school.

November and December weren't much better. She first saw the ped.

rheum. in November (on her tenth birthday). She did some blood work

(which ahs all been negative) and put her Naproxen and by the end of

January everything was great. Not realizing what was going on we took

her off the Naproxen thinking whatever she " had " was better. Then it

started all over in May. We got her back in to see the Dr. and were

basically told that she needed to be back on the Naproxen long term.

She has been back on the Naproxen long term since then and we finally

got the JRA diagnosis in July. She does good for a while and then has

a bad week. We basically let her whatever she feels up to. She

definitely pushes herself, sometimes too much.

Lately she has had itchy bumps on her scalp and she has been getting

sores in her mouth. She also just showed me that she has ridges on

her fingernails. Has anyone else experienced this. I don't know if

it's JRA related or something different.

Thank you!

Billie-jo

[Guest guest]

Welcome!

I'm still a newbie here myself, but thus far everyone seems so

awesome and very, very supportive. There is a wealth of knowledge

here!

The mouth sores... she's not on methotrexate? I know when one is on

mtx mouth sores are common. The suggest folic acid for that. I'm

not sure if that would help when you're not on it, but it may be

worth looking into. I really hope that you find meds soon that will

really help her. It's a slow process, but there is a light at the

end of the tunnel. Take care!

>

> I just found this list... I can't believe it took me so long or

that

> it is so active. My daughter was finally diagnosed with JRA in

July.

> We are VERY lucky to have a pediatric rheumatologist in our town.

> a has had knee pain on and off for years. We were originally

told

> that they were " growing pains " . Last October she was having so

much

> back, neck and shoulder pain that she missed over a week of

school.

> November and December weren't much better. She first saw the ped.

> rheum. in November (on her tenth birthday). She did some blood

work

> (which ahs all been negative) and put her Naproxen and by the end

of

> January everything was great. Not realizing what was going on we

took

> her off the Naproxen thinking whatever she " had " was better. Then

it

> started all over in May. We got her back in to see the Dr. and

were

> basically told that she needed to be back on the Naproxen long

term.

> She has been back on the Naproxen long term since then and we

finally

> got the JRA diagnosis in July. She does good for a while and then

has

> a bad week. We basically let her whatever she feels up to. She

> definitely pushes herself, sometimes too much.

> Lately she has had itchy bumps on her scalp and she has been

getting

> sores in her mouth. She also just showed me that she has ridges on

> her fingernails. Has anyone else experienced this. I don't know if

> it's JRA related or something different.

> Thank you!

> Billie-jo

>

[Guest guest]

This is only my second post. But thought I would update everyone on my

daughter, a's last rheumy appt. the Dr. said that her joints seem to be

doing well. All bloodwork is fine (always has been). a has been on 250 mg

Naproxen twice a day. She has not been pain free with this although she is MUCH

better than she was before. Her rheumy added a 125 mg dose in the middle of the

day during " bad times " . a definately flares when the temperature is really

cold (which is difficult since we live in Buffalo).

Now to my next question... We can tell when a is starting to not feel well

even before she does. She gets pale, cranky, and slows down. She is 11 and

very smart and fun when she feels good. I honestly don't think she realizes

this is happening. When we ask her how she's feeling she gets really snippy and

says " fine " . The only time she will admit to not feeling well is when it is so

bad she can barely move. I get very frustrated with her. Then we were talking

(my parents, my husband, and I) and got to thinking that maybe because she has

had some of these problems forever and they just gradually got worse that she

doesn't realize it's not normal. Does anyone else run into this with their

kids?

Any my last question... Does it every really sink in? a was officially

diagnosed last July. She has been having serious problems for a couple years.

Sometimes she goes a week feeling good, sometimes it's a couple months. And

when it hits her again it hits me again. I know this is something she will

probably have to live with forever. But every time she has a good spell I think

this is it. I prayed and prayed for a diagnosis so that we could start working

on making her better. Now I feel like we are only helping her cope. I gues my

question is do you ever get used to your child being ill? Or does it tear you

apart forever?

Thank you all so much for your support. Reading your posts over the last few

weeks has been a huge help. Just knowing that we are not alone in this.

Thanks!

Bille-jo

[Guest guest]

Hi Billie-jo,

I can't help with your question bc I am so very new to this and we don't have a

diagnosis yet. I can relate to the tearing you up part, though. I sobbed like

a baby last year when my child couldn't walk, and was even more distraught and

confused when well-wishers told me it was " growing pains " . The only one that

has been concerned is my ped, who saw the joint inflamed. The ortho and rheumy

didn't even acknowledge the limp which was ever so mild by the time I had my

appt last August. I found the ED discharge note yesterday and I just got

emotional reading the " problem " - " not likely an infection, cannot rule out other

causes such as rheumatic dz " .

I can understand a trying not to make a big deal out of it at her age and

sort of getting used to it. Someone here, I think it was Georgina, made a

comment about how all of us have something, and arthrits sufferers eventually

come to terms with the fact that arthritis is their " something " . No sense in

stewing in it, although as parents, I don't see how one cannot be repeatedly

emotionally in pain due to their child's suffering. How can you not be torn

apart seeing your child go downhill before your eyes, or hear your child say

he/she can't walk bc their knees hurt- when they are three or eleven?!!!!!!!!!!

I am up with sick kids again, this time, respiratory-just hope it's not RSV. My

poor child- the other twin- just got over a 5 day rotovirus and really hasn't

got any fat on him to deal with more calorie expenditure from breathing fast and

coughing constantly right now. I have given him so many OTC meds.

We got our labs back on his brother, the one we are working up. The sed rate was

10, but the lympocytes were 77, so it is obvious he was fighting a virus when

this knee pain and inflammation occurred.

I hope you somehow come to a peace with your daughter's illness, that is my hope

for all of us. We cannot let this dominate our lives and our hopes for our

children's futures.

mom to Harry, three, in the diagnostic phase- 2nd rheumy appt, March 4th

---- Billie-jo Jary <Beamjary@...> wrote:

> This is only my second post. But thought I would update everyone on my

daughter, a's last rheumy appt. the Dr. said that her joints seem to be

doing well. All bloodwork is fine (always has been). a has been on 250 mg

Naproxen twice a day. She has not been pain free with this although she is MUCH

better than she was before. Her rheumy added a 125 mg dose in the middle of the

day during " bad times " . a definately flares when the temperature is really

cold (which is difficult since we live in Buffalo).

>

> Now to my next question... We can tell when a is starting to not feel well

even before she does. She gets pale, cranky, and slows down. She is 11 and

very smart and fun when she feels good. I honestly don't think she realizes

this is happening. When we ask her how she's feeling she gets really snippy and

says " fine " . The only time she will admit to not feeling well is when it is so

bad she can barely move. I get very frustrated with her. Then we were talking

(my parents, my husband, and I) and got to thinking that maybe because she has

had some of these problems forever and they just gradually got worse that she

doesn't realize it's not normal. Does anyone else run into this with their

kids?

>

> Any my last question... Does it every really sink in? a was officially

diagnosed last July. She has been having serious problems for a couple years.

Sometimes she goes a week feeling good, sometimes it's a couple months. And

when it hits her again it hits me again. I know this is something she will

probably have to live with forever. But every time she has a good spell I think

this is it. I prayed and prayed for a diagnosis so that we could start working

on making her better. Now I feel like we are only helping her cope. I gues my

question is do you ever get used to your child being ill? Or does it tear you

apart forever?

>

> Thank you all so much for your support. Reading your posts over the last few

weeks has been a huge help. Just knowing that we are not alone in this.

>

> Thanks!

> Bille-jo

>

>

>

[Guest guest]

Hi Billie-jo. Yes when the kids are not feeling well you can tell with

some. They often get cranky and tired before a flare will hit. Plus,

your daughter is 11 - having had two daughters go through that, it is

normal for them as well. Even boys of that age can have it happen.

Hormones, anyone?

I am a bit concerned about a only being on Naproxen though. Of

course, that is up to you and your dr, but if she is having days of pain

and flares, her arthritis is not under control. Many drs feel that

adding a DMARD early in the course of the disease helps to get things

under control and lessen the damage that can occur. Has the rheumy

talked about adding any different meds to help a? One thing I always

remember is what my son's rheumy told us during one of our first visits

- the goal is to get the child pain free. There are so many different

meds out there that can help by going after the disease itself, not just

an NSAID which only helps with inflammation. That is of course very

important, but does not do a whole lot to stop the disease. My son's dr

wanted him off the NSAID as soon as we could, so we used methotrexate to

get the disease under control. He was able to stop his Celebrex, as the

dr believed the side effects from an anti inflammatory could be worse.

This is of course our experience. Maybe if you could get the disease

under more control, she would have less pain.

Good luck, let us know how she is doing, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of Billie-jo Jary

Sent: Wednesday, February 18, 2009 5:36 PM

Subject: Re: New to the list

This is only my second post. But thought I would update everyone on my

daughter, a's last rheumy appt. the Dr. said that her joints seem to

be doing well. All bloodwork is fine (always has been). a has been

on 250 mg Naproxen twice a day. She has not been pain free with this

although she is MUCH better than she was before. Her rheumy added a 125

mg dose in the middle of the day during " bad times " . a definately

flares when the temperature is really cold (which is difficult since we

live in Buffalo).

Now to my next question... We can tell when a is starting to not

feel well even before she does. She gets pale, cranky, and slows down.

She is 11 and very smart and fun when she feels good. I honestly don't

think she realizes this is happening. When we ask her how she's feeling

she gets really snippy and says " fine " . The only time she will admit to

not feeling well is when it is so bad she can barely move. I get very

frustrated with her. Then we were talking (my parents, my husband, and

I) and got to thinking that maybe because she has had some of these

problems forever and they just gradually got worse that she doesn't

realize it's not normal. Does anyone else run into this with their kids?

Any my last question... Does it every really sink in? a was

officially diagnosed last July. She has been having serious problems for

a couple years. Sometimes she goes a week feeling good, sometimes it's a

couple months. And when it hits her again it hits me again. I know this

is something she will probably have to live with forever. But every time

she has a good spell I think this is it. I prayed and prayed for a

diagnosis so that we could start working on making her better. Now I

feel like we are only helping her cope. I gues my question is do you

ever get used to your child being ill? Or does it tear you apart

forever?

Thank you all so much for your support. Reading your posts over the last

few weeks has been a huge help. Just knowing that we are not alone in

this.

Thanks!

Bille-jo

[Guest guest]

Hi Billie-Jo - Yes - I think that is so true. The kids have dealt

with that pain for so long that they don't realize that it isn't

right. When we started all this with Grant, he had no pain with his

inflammed joints. I asked our rheumy if that was normal and he said

that it is in about half of his patients. But many of them once

they start meds like MTX will start to feel so much better that they

realize what they were feeling before meds was not normal.

It sounds to me like adding another medication like mtX could really

help her feel better. I don't feel that a should have to " cope "

with feeling bad when there are other meds to try other than

Naproxen. Naproxen does not stop the progression of the disease it

just controls pain and inflammation. A DMARD like MTX will stop the

progression of the disease and very probably make a feel

better.

To answer your last question, we've only been at this about 2 years

too and I certainly haven't gotten " used to it " it is always

there. But this group helps me so much. Since I don't know anyone

personally that has a child with JRA, this group helps me cope with

it all.

& Grant (12, PsA/Uveitis)

>

> This is only my second post. But thought I would update everyone

on my daughter, a's last rheumy appt. the Dr. said that her

joints seem to be doing well. All bloodwork is fine (always has

been). a has been on 250 mg Naproxen twice a day. She has not

been pain free with this although she is MUCH better than she was

before. Her rheumy added a 125 mg dose in the middle of the day

during " bad times " . a definately flares when the temperature is

really cold (which is difficult since we live in Buffalo).

>

> Now to my next question... We can tell when a is starting to

not feel well even before she does. She gets pale, cranky, and

slows down. She is 11 and very smart and fun when she feels good.

I honestly don't think she realizes this is happening. When we ask

her how she's feeling she gets really snippy and says " fine " . The

only time she will admit to not feeling well is when it is so bad

she can barely move. I get very frustrated with her. Then we were

talking (my parents, my husband, and I) and got to thinking that

maybe because she has had some of these problems forever and they

just gradually got worse that she doesn't realize it's not normal.

Does anyone else run into this with their kids?

>

> Any my last question... Does it every really sink in? a was

officially diagnosed last July. She has been having serious

problems for a couple years. Sometimes she goes a week feeling

good, sometimes it's a couple months. And when it hits her again it

hits me again. I know this is something she will probably have to

live with forever. But every time she has a good spell I think this

is it. I prayed and prayed for a diagnosis so that we could start

working on making her better. Now I feel like we are only helping

her cope. I gues my question is do you ever get used to your child

being ill? Or does it tear you apart forever?

>

> Thank you all so much for your support. Reading your posts over

the last few weeks has been a huge help. Just knowing that we are

not alone in this.

>

> Thanks!

> Bille-jo

>

>

>

[Guest guest]

I know that our ped rheumy's goal is to get a pain free for 1 year on meds

in the hope that we would then be able to stop the meds and hope that she

remained pain free. Actually this was working quite well, I thought. When we

put her on the naproxen it helped SO much! Then over the past few months she

started having small flares and now this one is probably the worst she's had on

Naproxen. But it is not even comparable to what she was going through before.

We just uped her Naproxen this week. I was hoping that would do the trick. Is

it normal for a drug to work for a while and then stop? I'm scared to death of

her going on another med.

Thanks again for everyones support! This group is amazing!!!

Billie-jo

Re: New to the list

This is only my second post. But thought I would update everyone on my

daughter, a's last rheumy appt. the Dr. said that her joints seem to

be doing well. All bloodwork is fine (always has been). a has been

on 250 mg Naproxen twice a day. She has not been pain free with this

although she is MUCH better than she was before. Her rheumy added a 125

mg dose in the middle of the day during " bad times " . a definately

flares when the temperature is really cold (which is difficult since we

live in Buffalo).

Now to my next question... We can tell when a is starting to not

feel well even before she does. She gets pale, cranky, and slows down.

She is 11 and very smart and fun when she feels good. I honestly don't

think she realizes this is happening. When we ask her how she's feeling

she gets really snippy and says " fine " . The only time she will admit to

not feeling well is when it is so bad she can barely move. I get very

frustrated with her. Then we were talking (my parents, my husband, and

I) and got to thinking that maybe because she has had some of these

problems forever and they just gradually got worse that she doesn't

realize it's not normal. Does anyone else run into this with their kids?

Any my last question... Does it every really sink in? a was

officially diagnosed last July. She has been having serious problems for

a couple years. Sometimes she goes a week feeling good, sometimes it's a

couple months. And when it hits her again it hits me again. I know this

is something she will probably have to live with forever. But every time

she has a good spell I think this is it. I prayed and prayed for a

diagnosis so that we could start working on making her better. Now I

feel like we are only helping her cope. I gues my question is do you

ever get used to your child being ill? Or does it tear you apart

forever?

Thank you all so much for your support. Reading your posts over the last

few weeks has been a huge help. Just knowing that we are not alone in

this.

Thanks!

Bille-jo