New member

[Guest guest]

tristan is also taking MTX, and he is at the highest possible dose for his

age. yes, his doctor told us that with the older children they numb the area

but the childern are in pain when the med is injected. he said it stings like

hell. but tristan will be put to sleep while they do this, which is a very

large concern for me, and the fact that i will have to try and keep him still

for 48 hours!! thank god for disney movies! LOL cheri

[Guest guest]

thankyou for the reassurance. it sounds like both of our children are on the

same meds except ive never heard of naproxyn, several of the children are

taking it...i will ask my sons doctor about it. he is taking motrin. i can

imagine how frustrating it was for you, because it took so long for doctors

to discover that your child has JRA. thank god our sons ped. suspected it was

arthritis then did some tests anyways and sent him to a specialist. he had a

firm diagnosis within 5 weeks. well good luck and thanks again! cheri

[Guest guest]

Dear Cheri:

Welcome to the list. My name is Afsi and I have a daughter (Sara) who also has

polyarticular JRA. She was also diagnosed with this evil condition when she was

17 months old and it took the stupid doctors 3 whole months to really find out

what was wrong as she was not demonstrating a lot of swelling in her ankes,

knees, or wrists. She was just in pain most of the day and was not active and

she was not eating properly. Also she was limping when she walked and we kept on

taking her to the different orthopedic doctors until one of them (God bless his

heart) suggested that we should see a Rhuematologist. Even her pediatricians

(we saw so many) could not tell what was going on and they kept saying she had

behavioral problems!!! Any how, as soon as she was diagnosed (we did a bone

scan, and lots of blood work) the dr put her on Naproxyn and prednisone and

after 1 month they put her on Methotrexate (5 mg) per day. Thank God, her

arthritis has been very manageable. Now she is only on Methotrextae (5 mg) per

week and we had to stop the Naproxyn in Nov of 1998 since she developed bleeding

ulcers as a result of taking it. Now she is pain free and is not symptomatic

except for one of her fingers that has still a little swelling. I hope you will

be able to get your son's condition under control very soon and I hope things

start improving quickly for you. I know this is a very frustrating condition

but you have to be patient and have lots of hope. Hang in there and good luck.

cheri97706@... on 01/04/2000 04:20:21 PM

Please respond to onelist

onelist

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

Subject: [ ] new member

From: cheri97706@...

i am a new member here and would like to know if anyone else has a small child

with polyarticular JRA.my son is 2 (he will be 3 in april) and was diagnosed

with JRA at 16 months old. he goes to Texas Childrens Hospital in Houston, Tx.he

has a team of wonderful doctors and nurses there. he is currently taking 2.5mg

prednisone(down from 20mg).5cc methotrexate once a week,2 tsp ibuprofen 3 times

daily, plus folic acid and leucovorin. he was also taking sulfasalazine but it

proved ineffective so we have discontinued. now his doctors have come close to

running out of options because his arthritis is extremely aggressive-they have

given us a few options and we've decided on joint injections. if that doesnt

work we may have to try EMBRIL. if anyone can offer some advice or if anyone

elses child has been given joint injections please let me know how successful

this procedure was. my sons name is tristan and his procedure has been scheduled

for jan 14 th. thankyou!

cheri mudd

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

[Guest guest]

Hi Cheri,

I just wanted to say hello and welcome you to our list. I'm glad that

you found us and I hope you'll find it helpful in some ways. My son is

10 and has had JRA for 4 1/2 years, the systemic type. He takes 20mg

prednisone a day, 25mgs indomethacin twice a day, 100mcg cytotec twice a

day, miacalcin nasal spray, 100/200mgs hydroxychloroquine a day, calcium

and iron, and gets a weekly MTX injection. He's doing pretty well right

now, as he got over the most recent flare. He's never had the joint

injections you mentioned, and our doctors haven't yet prescribed Enbrel

for any of their systemic patients.

Good Luck. And let us know how it goes, okay?

Take care,

Georgina

cheri97706@... wrote:

> i am a new member here and would like to know if anyone else has a small child

with polyarticular JRA.my son is 2 (he will be 3 in april) and was diagnosed

with JRA at 16 months old. he goes to Texas Childrens Hospital in Houston, Tx.he

has a team of wonderful doctors and nurses there. he is currently taking 2.5mg

prednisone(down from 20mg).5cc methotrexate once a week,2 tsp ibuprofen 3 times

daily, plus folic acid and leucovorin. he was also taking sulfasalazine but it

proved ineffective so we have discontinued. now his doctors have come close to

running out of options because his arthritis is extremely aggressive-they have

given us a few options and we've decided on joint injections. if that doesnt

work we may have to try EMBRIL. if anyone can offer some advice or if anyone

elses child has been given joint injections please let me know how successful

this procedure was. my sons name is tristan and his procedure has been scheduled

for jan 14 th. thankyou!

> cheri mudd

[Guest guest]

Cheri:

My son has systemic jra and has had cortisone injections a number of

times

in his ankles and knees. The knee injections have always been very

effective ie. 4 to 6 months of relief. however the ankles were always a

waste of effort and pain.

Just our experiences.

Bob Tilk

[Guest guest]

if the injections do not work we will have to try the EMBRIL but im hopeful

that once he has the injections he wont need any more, and if it proves very

successful, he may be able to taper off all meds except for MTX. i can only

keep my fingers crossed that it will be that simple. thanks for sharing the

info! cheri

[Guest guest]

Hi Cheri,

I have a daughter, now 2,5 years, diagnosed with 13 months with

polyarticular arthritis. My daughter was on Motrin also. Motrin seemed to

be much better for her in regards taking the pain, while as she was under

naproxyn, she could not move and had much more pain. So the doctors

switched her back. Unfortunately, the Motrin caused alot of stomach

problems for her, she could not eat or hold her food down etc. But luckily

every child is different. If you find blood in Tristan's stool, I would

definetly talk to the doctor. This may be a sign for an ulcer. How is his

bloodwork?

Our daughter had also several joints affected (over 20), got twice joint

injections and was both times put to sleep. I found that an awful

experience (more for me though, than for her). The joint injections helped

her right away - what does not help to keep them quiet afterwards. She felt

much better, wanted to move etc.

If you have anymore questions or just need to talk my e-mail address is:

reginafe@...

Good luck

Regina

>From: Cheri97706@...

>Reply- onelist

> onelist

>Subject: Re: [ ] new member

>Date: Wed, 5 Jan 2000 17:41:56 EST

>

>thankyou for the reassurance. it sounds like both of our children are on

>the

>same meds except ive never heard of naproxyn, several of the children are

>taking it...i will ask my sons doctor about it. he is taking motrin. i can

>imagine how frustrating it was for you, because it took so long for doctors

>to discover that your child has JRA. thank god our sons ped. suspected it

>was

>arthritis then did some tests anyways and sent him to a specialist. he had

>a

>firm diagnosis within 5 weeks. well good luck and thanks again! cheri

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hello Afsi,

I'm thrilled that Sara is continuing to do well! It can be so very

frustrating to know that something's just not right, to see our child

struggling, and then have medical professionals not notice what we try

to bring to their attention. I'm so glad they finally referred you to a

rheumatologist, who was able to figure it out and quickly get things

under control. I am so happy when I read messages like yours

Much Aloha,

Georgina

Afsi Goodarzpoor wrote:

>

> Dear Cheri:

>

> Welcome to the list. My name is Afsi and I have a daughter (Sara) who also has

> polyarticular JRA. She was also diagnosed with this evil condition when she

was

> 17 months old and it took the stupid doctors 3 whole months to really find out

> what was wrong as she was not demonstrating a lot of swelling in her ankes,

> knees, or wrists. She was just in pain most of the day and was not active and

> she was not eating properly. Also she was limping when she walked and we kept

on

> taking her to the different orthopedic doctors until one of them (God bless

his

> heart) suggested that we should see a Rhuematologist. Even her pediatricians

> (we saw so many) could not tell what was going on and they kept saying she

had

> behavioral problems!!! Any how, as soon as she was diagnosed (we did a bone

> scan, and lots of blood work) the dr put her on Naproxyn and prednisone and

> after 1 month they put her on Methotrexate (5 mg) per day. Thank God, her

> arthritis has been very manageable. Now she is only on Methotrextae (5 mg)

per

> week and we had to stop the Naproxyn in Nov of 1998 since she developed

bleeding

> ulcers as a result of taking it. Now she is pain free and is not symptomatic

> except for one of her fingers that has still a little swelling. I hope you

will

> be able to get your son's condition under control very soon and I hope things

> start improving quickly for you. I know this is a very frustrating condition

> but you have to be patient and have lots of hope. Hang in there and good

luck.

[Guest guest]

Hi ,

I just wanted to say that I hope the procedure goes well and that it is

helpful for . Let us know afterwards, okay?

Take care,

Georgina

SHANNON MARTINO wrote:

>

> hello

> and thank you for your input it is very important for me to be informed

> will be put under for this that they can do all three joints so I

> hope she will not feel any thing. Did it hurt a lot the next day or was she

> ok? I am afraid of that happening I am doing this so that (hopefully)

> can get some range back in her ankles she has toe walked for almost a year

> now so this is a last ditch effort well thanks again

[Guest guest]

Janet wrote:

Hi ,

Mandy's knee hurt for several days after the injection. It seems like no

one on this list has ever heard of plaquenil and Tolmetin? Ask your

doctors about them. I just hope and pray for your sake, and Cheri's that

the injections help your children. Have the doctors ever tried water

therapy? Just curious....Good luck, Janet

Hi Janet,

Josh takes Plaquenil (which also goes by the name hydroxychloroquine),

too. One day he gets 100mgs and the next 200mgs, like that. Tolmetin is

just one of the many different types of NSAIDs, I think.

Take care,

Georgina

[Guest guest]

My so took naprosyn for about 3 years. It worked great. I could tell a

difference. After that his stomach just couldn't take it. My son is 17 and

he doesn't have much of an appetite either. He also have good and bad days.

He try so hard not to let him get him down. He has been diagnose since he

was 4. If any other teenage out there would like to talk to him, that would

be great. Because we don't know anyone esle that have this illness Thank God

I found you all. Now I think he would like to talk to someone that is going

threw the samething is.

Alison

[Guest guest]

Alison,

Welcome:) A newbie that's great. I have 4 kids 2 are teens and

they to are struggling with this illness our eldest is 15 she's had the

illness since Oct 98 as for the rest of the kids the boys were diagnosed over

the summer. Its not easy is it? Our eldest son has bouts of depression and is

going to have to see the doc about it but, actually they all have bouts when

they can't seem to deal with this I myself still have times when I can't take

it but I've been living with this since I was a teenager I'am now 38. Well I

hope to hear from you and if your son would like to talk to one of my teens

let me know. Have a nice day:)

Teena

[Guest guest]

Alison,

My son is 13 in 7th grade, which may be too young for your son.

My son has been looking for a " pen pal " , he doesn't know anyone

with JRA either. He has had Polyarticular JRA for 5 years and

is a sports nut! What type does your son have? (There aren't many

teenage boys on this site.)

If your son would like to send a message to mine, his name is

Robbie at Skinnyboy33@....

Welcome!! Jana

[Guest guest]

Jana

Thanks I gave my son your son e-mail he said that he would e-mail him.

He plays Basketball and one year he played Football. He broke his finger and

we didn't know it until 3 months later. Next year will be his last year high

school and he want to try it again. We will see.

Thanks again

Alison

[Guest guest]

Alison,

Great! Robbie pays basketball too, with a passion. He played

light weight football this year, didn't exactly play much... the

other light weights weighed as much as 50 lbs more then him.

They should have plenty to talk about. Jana

[Guest guest]

Hello Jan,

Well, yesterday my son Marcus quit the basketball team. He had not been

playing as much as last year and he was complaining about it a lot.

Yesterday he woke up and said that he quit. I truly believe that is because

of his lost of movement in his wrist. He plays point guard and they had move

him at two. He has lost a lot of range in his wrist and is supposed to have

surgery, but we were trying to hold off until after school was out. The

hardest thing for me is that he didn't say that was the reason that he was

leaving the team. I talk to his coach and we figure it out. Hopefully we

can get this surgery done and get him back on that team next year. His love

is Basketball and to have to let it go I is like a nightmare for he but he

doesn't want to talk about it. That's the only thing that going to help. I

am open for some ideas to help him open up.

[Guest guest]

Hi Alison,

Your son sounds so much like mine! Robbie is also a point guard...

he has this really odd looking shot because of lack of range in his

wrists... looks like Robbie could end up in the same place

Marcus is now. I can appreciate what a problem this is for

you, basketball is Robbie's life as well. I hope Marcus can get

things fixed and back to playing next year.

I also have a similar communication problem. My solution? I have

found that Robbie is more forth coming with his doctors then he

is with me. He hasn't gotten to the point where he will defy their

authority, so he answers them honestly. Robbie is seeing a

psycologist to attempt to get past his needle phobia. I have

joined in with them at the end of the session to work on our

communication issues. So far, we have figured out that

he doesn't want to tell me if his JRA is bad because it usually

leads to more Dr.s and drugs (including the needles). Plus,

he with holds details from me because he doesn't want to

hurt me and make me feel bad if things are not going well.

I am feeling that if we do this for a while, we will understand

each other better and communicate better.

Jana

[Guest guest]

In a message dated 1/30/00 9:06:39 PM Eastern Standard Time, gmckin@...

writes:

<< I was wondering if you go right into the exam room with Robbie, when he

sees the rheumatologist? I go in with but he's almost 10 years

old and I was wondering at about what age most parents start waiting

outside and letting the children handle the visits on their own? >>

Georgina,

My parents still come with me into the exam room when we see the

rheumatologist. They want to hear everything he has to say, and have him

explain the latest treatments, as to better pressure me until my life is a

living hell and I finally give in.

cheers

Jenni (not feeling cheery)

[Guest guest]

Hi,

I was wondering if you go right into the exam room with Robbie, when he

sees the rheumatologist? I go in with but he's almost 10 years

old and I was wondering at about what age most parents start waiting

outside and letting the children handle the visits on their own? Josh is

much more communicative about his JRA stuff with me, than he is with the

doctor, so I relay alot of the info. I know it's important, at some

point, to let the children take more of this responsibility. Seems like

Robbie's on his way to that transition and it makes me wonder about how

my son will deal with these same issues.

Take Care,

Georgina

JANABECKER@... wrote:

> Hi Alison,

> Your son sounds so much like mine! Robbie is also a point guard...

> he has this really odd looking shot because of lack of range in his

> wrists... looks like Robbie could end up in the same place

> Marcus is now. I can appreciate what a problem this is for

> you, basketball is Robbie's life as well. I hope Marcus can get

> things fixed and back to playing next year.

>

> I also have a similar communication problem. My solution? I have

> found that Robbie is more forth coming with his doctors then he

> is with me. He hasn't gotten to the point where he will defy their

> authority, so he answers them honestly. Robbie is seeing a

> psycologist to attempt to get past his needle phobia. I have

> joined in with them at the end of the session to work on our

> communication issues. So far, we have figured out that

> he doesn't want to tell me if his JRA is bad because it usually

> leads to more Dr.s and drugs (including the needles). Plus,

> he with holds details from me because he doesn't want to

> hurt me and make me feel bad if things are not going well.

> I am feeling that if we do this for a while, we will understand

> each other better and communicate better.

>

> Jana

[Guest guest]

Hi Georgina,

I do go in the doctors office with Robbie. Since Robbie is more forth

coming with the Dr. then he is with me, it's usually how I figure out

whats going on. Good point though, I don't know when I should

stop going with in with him. Maybe when he is 16 can can drive

himeself? Any advise on this out there?

Thanks, Jana

[Guest guest]

Jenni,

I hate to say it, but I'm your parents! In all your wisdom, what

role do you think parents should play at what ages?

Thanks, Jana

[Guest guest]

In a message dated 2/1/00 4:01:11 PM Eastern Standard Time, JANABECKER@...

writes:

<< In all your wisdom, what

role do you think parents should play at what ages? >>

Jana,

Honestly? I have no idea. I do wish they would take my opinion more

seriously than the doctor's. They have a mindset where the professional is

always right, and in my experience I've found that's not always true. For

example, they'll come with me to the rheumatologist and I'll tell him that

I've been feeling awful recently and my joints hurt and I have trouble moving

without pain -- then the doctor examines me, says he doesn't see any major

swelling, and from that moment on my parents decide I'm not having a flare

and everything's fine, and they start ignoring my complaints of pain. That

scenario has happened so many times I couldn't begin to count. I've tried

talking to them about it, talking to the doctor about it, talking to them and

the doctor at the same time, even professional therapy. It didn't do much.

At this point, the best I can do is settle back and make my own decisions

about my health care, and try not to feel too guilty if I happen to disagree

with my parents. It was a HUGE relief having my 18th birthday. They can no

longer sign the consent form that says " Take our daughter and do whatever you

want to her even if it's incredibly painful\expensive\unnecessary and she

disagrees " .

cheers

Jenni

[Guest guest]

HI its me Alison, My son is 17 and I still go in the room with him. I

believe he wants me to. We have never talk about it. I do go out when the

dr does his exam. My son is shy when it comes to dr. He doesn't say very

much.

Alison

[Guest guest]

My advice is ask your child. And if you do choose to go in anyway, let the

child take the lead. Your child will be dealing with this issue long after

you are gone and it is very important that they begin handling things as

early as possible. As an adult leader of childrens support discussions, I

can tell you that children are more likely to be more talkative and open

when parents are not in the room.

My mother began waiting in the waiting room when I was 13 <unless I invited

her in>

Debbie Schuh

Re: New member

>From: JANABECKER@...

>

>Hi Georgina,

>

>I do go in the doctors office with Robbie. Since Robbie is more forth

>coming with the Dr. then he is with me, it's usually how I figure out

>whats going on. Good point though, I don't know when I should

>stop going with in with him. Maybe when he is 16 can can drive

>himeself? Any advise on this out there?

>

>Thanks, Jana

>

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

[Guest guest]

Hi Debbie,

Good advice. Thanks

~Georgina

> From: " Jerry Gates " <retiger2@...>

>

> My advice is ask your child. And if you do choose to go in anyway, let the

> child take the lead. Your child will be dealing with this issue long after

> you are gone and it is very important that they begin handling things as

> early as possible. As an adult leader of childrens support discussions, I

> can tell you that children are more likely to be more talkative and open

> when parents are not in the room.

> My mother began waiting in the waiting room when I was 13 <unless I invited

> her in>

>

> Debbie Schuh