Update on

[Guest guest]

,

That is wonderful news about ! :-) I love to hear good news, it always

helps me to stay positive. Hope everything continues to go well for her.

[Guest guest]

Hi, just got back from 's rheumy appt. I was so optimistic that we were

going to start weaning down on her naprosyn because she is doing so well. For

one thing we waited 1 1/2 hr. just to see another rheumy ('s Dr. is on

vacation) , and the other thing is he didn't change her meds. 's knee is

still slightly swollen and she doesn't have any pain so the rheumy wants to

keep her on the naprosyn and see her again in 3 months (next visit will be

with her regular rheumy). My husband and I kind of got the impression that

the rheumy we saw didn't want to mess with her meds because she is another

Drs. patient. I don't mean to be ungrateful because I know there are a lot of

other kids in the group who are a lot worse off than but my husband and

I are disappointed because we thought for sure we were beating this disorder.

Well , Thank you for letting me vent. We will continue the naprosyn like we

were told and hope for the best on our next visit.

Teri ( mother of , age 3, pauci jra)

[Guest guest]

Teri,

I can relate to how you're feeling. Kelsey (also 3) has poly and is taking

Naprosyn. She has very little swelling, and it is only in her wrists. I am

in hopes of weaning her off the Naprosyn soon, but I'm afraid she will flare

if we do. I, too, feel fortunate that Kelsey's jra is mild compared to

others. It kills me sometimes when Kelsey cries when its time to take her

medicine. She doesn't fight me, but she hates it and sometimes she begs me

not to make her take it. You're probably right about the doctor not changing

anything since he isn't 's regular doctor. Its great that her knee

hasn't been hurting. How much Naprosyn does she take each day? Kelsey gets

1tsp. in the mornings and 1 1/2 tsp at night. So far we've been lucky and

she hasn't had any stomach problems from it. Try to stay optimistic,

hopefully her regular doctor will consider weaning her off the Naprosyn.

Besides, 3 months from now she could be even better!

Have a nice weekend,

[Guest guest]

glad emily is doing better but the doctor as you said may just want to keep

her on the reg scheduled meds for a few more months till the reg doctor sees

her

also this will help the reg doctor see how emily is doing and wean her the

next visit

dont give up hope darlin good things come to those who wait

and when its this you want to take all precautions

you also have to look at it this way what if he reduced the dose and emily

started haveing problems again you would have to start it all back over

prayers are with yall hold your chin up and say yall will beat this

Robbin

[Guest guest]

Michele,

is on 1 tsp in the morning and 1 tsp. at night. The rheumy who saw

her today said there wasn't much room to up the dose based on her height and

weight.

Teri

[Guest guest]

Teri: know exactly how you feel. When me and Ashli (8 years old with JRA in

her knees and ankles/heels/feet) went to her rheumy a few weeks ago -- I came

out of there very upset. I wrote this group about it at the time, just to

vent also. Doctor upped Ashli dosages of motrin and plaquenil, becuase she

grew taller and gained weight. We are now up to 1,200 mg motrin a day and

200 mg. plaquenil a day with one day a week with an extra pill. But I can

say that the last few weeks, we have seen improvement. I believe it is the

plaquenil kicking in (because it takes at least 3 months before it will

work). The daily pain is a lot less and the constant swelling in her knees

has pretty much gone away. Her heels are still bothering her and struggling

right now with what kind of shoes to buy for school. We go to a private

school, so our styles are limited. Will talk to PT this week about it. I

pray for and I agree that the doctor didn't want to mess with another's

patient and best to play it safe for a few more months!

Take care,

Sandi A. (Ashli's mom)

[Guest guest]

Hi! I would like to thank you very much to those of you who replied to my

venting session about s rheumy appt. We will continue to be optimistic

because we will beat the arthritis ! Thank you for your support . Teri

[Guest guest]

Georgina: Glad to hear that Josh's appt on Friday went well. Hope the

swimming will bring the shoulder extension back to 100%. I know the daily

swimming throughout the summer did wonders for Ashli. Wanted to also let you

know I saw a little 1st grader in class with one of the bookbags with wheels.

This JRA camp sounds really great. Do you know if other area chapters do

this? Our local chapter doesn't seem to, unless I just haven't been

notified. Also great how your chapter pays for so much!

Thanks for everything,

Sandi A. (Ashli's mom)

[Guest guest]

Hello everyone,

How are you all, I take it most of the kids are back

in school now. started 4th grade Wednesday, this was the first time

since kindergarten that he didn't start school all puffy from the prednisone.

He is feeling great and has gained so much confidence over the summer. He

has wanted to moose his hair which cracks me up! We bought him one of those

new silver light weight scooters and he loves it! Now he can keep up with all

the kids, he still hasn't wanted to ride a bike, he can get going on a bike

but when he stops he falls over because his legs aren't long enough to reach

the ground quick enough. I think he gets embarresed then doesn't want to try

it again. but with the scooter you can tell he thinks he is cool!!Tomorrow we

bring him down to 6 mg prednisone.Hopefully by Januyary he will be off it

totally.I signed him up for fall soccer. He still is very small 4ft tall and

is one of the smallest in his grade, The DR. did mention growth hormones and

we will see a specialist about that, but of course the whole idea of another

potent drug in his systen scares me. From what the Dr. say growth hormones

aren't that successful, maybe you gain an inch or so.. any one have any info

on growth hormones??? Well gotta go get kids to bed, wishing all the children

the best, parents too!! Jane

[Guest guest]

Jane

just wait on the growth hormones

talk with the specialist but just listen to what he has to say

i dont know what your children percentile is on the growth chart BUT

i will let you know melissa has always been under the 5 percentile since she

was born and it is ok

melissa is right now 4 foot 7 or 8 inches

at 13 thats short boys seem to grow in spurts

and girls too but some just grow at their own speed

this also looks into family back ground

melissa was diagnosed with constitutional growth delay

shes been to endocrinologists and she has the blood drawn to check the

hormones

and she does go through the bone growth xrays once a year

they look at the cartilage in the hands/wrists and ankles mostly

is he haveing any problems due to the growth?

i fixed up melissa a bike just for her she loves it so what if the other

kids can ride the 26 inch bikes lolol like i told melissa i cant ride those

and i am a grown woman

lolololol she got her firth 20in bike at 11 years old the seat is lower

but she use to ride it alot but since this JRA she kinda just lets it stay

in the garage

and walks around

have they checked the acid in your childs blood?

Robbin

[Guest guest]

Jane

another thing i see your son is 4ft tall in the 4th grade

melissa is 4 ft 7 or 8 inches in the 8th grade

as long as everything is normal

just wait

when boys get to 12 and 13 and 14 it seems they grow a inch every night

lolololol my son sure seemed like that

Robbin

[Guest guest]

Robbin40@... wrote:

> Jane

> another thing i see your son is 4ft tall in the 4th grade

> melissa is 4 ft 7 or 8 inches in the 8th grade

> as long as everything is normal

> just wait

> when boys get to 12 and 13 and 14 it seems they grow a inch every night

> lolololol my son sure seemed like that

> Robbin

>

> For links to websites with JRA info visit:

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

Hi,

My son was 3 feet 11 inches tall in 1st grade. And in 2nd & 3rd. And in

4th grade. Now, starting 6th grade, he's just about 4 feet tall. Though

JRA itself can cause disturbances in growth patterns ~especially while

the disease is active~ my son's short stature/growth retardation is

likely due to long term prednisone use. It's one of the notable side

effects when used in treating children. Not, by far, the most serious or

dangerous side effect ... just a very visible reminder. As it stands

now, he just decreased to 10mgs a day. He's managing okay. A little

breakthrough pain. Some stiffness in the morning, but only slight. So

far, so good. He's been taking prednisone daily for 5+ years, at fairly

high doses during periods of flares. If his (systemic) JRA wasn't so

active and persistent, steroid use would have been short term.

We've been dealing with the issue of major stunted growth for a few

years, now. We've looked at it from a lot of different angles. Sat down

as a family and watched videos about Human Growth Hormone therapy.

Watched a documentary on The Learning Channel about 'little people.'

Have had discussions with a child psychologist, where one of the issues

raised was Josh being small for his age. Trying to find out how he feels

about it and about people's reactions to his height. Once we determined

that there was indeed a growth disturbance we had regular bi-annual

visits with a pediatric endocrinologist on Oahu (there are none based

here on our island). We've also talked about modifications that can help

make things more accessible for adults who are small, like specially

adapted cars. We've got footstools all over the house, to make things

easier to reach here at home, too.

decided that he is comfortable enough with his body image and

prefers not to begin treatment with HGH. It's another challenge but one

he handles well. We talk about it regularly, in case his feelings may

change. It's brought up often because people are so surprised that his

younger sister is about 6 inches taller than him. I think he's the

smallest boy at his new school. But, like they say, good things come in

small packages He has no problem telling people why he's short, if

they ask. Explaining to them it's because of the steroid medicine he

takes for his arthritis. Children (and adults) ask him about it and

comment on it but not in a taunting way. He's a really sweet kid though,

one who doesn't tease others, so maybe that's why he hasn't been picked

on about it?

HGH therapy would mean an injection every day ~for years~ and no

guarantee that he would be a responder. Instead, we continue trying to

keep his JRA controlled while at the same time being doggedly persistent

about lowering his steroid intake. They are currently working on a new

growth hormone that needs to be taken just once a week, instead of

daily. Josh says he might be willing to try that one when it comes out,

if he still hasn't grown by then. HGH is a very expensive treatment.

More costly than Enbrel and many insurance carriers won't provide

coverage. I think it's still considered an experimental treatment in the

US (?). Manufacturer's like Eli Lily do have special financial programs

to help those who don't have insurance coverage and who aren't able to

pay full cost, but who can provide documentation showing they meet

certain medical criteria. There are several tests that need to be done

first. (They can be ordered by an endocrinologist, preferably one who

sees lots of pediatric patients. Maybe even some JRA patients?) Josh had

all but one of the tests - a brain scan. Since the growth of cells in

brain tumors would be affected too, they have to rule these out.

This post is getting way long. And the kids are just getting home from

school. If you want to read some more about this, check the message

archives at the egroups website for our group. Type in growth hormone,

or short stature in the search field and I'm sure a couple interesting

articles will pop up

Take care,

Georgina

[Guest guest]

Jitz45@... wrote:

> Hello everyone,

> How are you all, I take it most of the kids are back

> in school now. started 4th grade Wednesday, this was the first time

> since kindergarten that he didn't start school all puffy from the prednisone.

> He is feeling great and has gained so much confidence over the summer. He

> has wanted to moose his hair which cracks me up! We bought him one of those

> new silver light weight scooters and he loves it! Now he can keep up with all

> the kids, he still hasn't wanted to ride a bike, he can get going on a bike

> but when he stops he falls over because his legs aren't long enough to reach

> the ground quick enough. I think he gets embarresed then doesn't want to try

> it again. but with the scooter you can tell he thinks he is cool!!Tomorrow we

> bring him down to 6 mg prednisone.Hopefully by Januyary he will be off it

> totally.I signed him up for fall soccer. He still is very small 4ft tall and

> is one of the smallest in his grade, The DR. did mention growth hormones and

> we will see a specialist about that, but of course the whole idea of another

> potent drug in his systen scares me. From what the Dr. say growth hormones

> aren't that successful, maybe you gain an inch or so.. any one have any info

> on growth hormones??? Well gotta go get kids to bed, wishing all the children

> the best, parents too!! Jane

Hi Jane,

Great to hear that is doing so well physically and gaining so much

confidence. I understand exactly what you mean about his difficulty with

the bike. outgrew his 16 inch bike a while back, so when he was

feeling well enough to ride again I went shopping for a 20 inch to

surprise him with. I found what I thought was the perfect bike.

Unfortunately, it wasn't exactly what Josh wanted. We returned it and I

let him choose the bike he wanted. Then I had my welder-neighbor make

some adjustments with the main frame since even in the lowest position

the seat was still too high Well, as it turns out not just the seat

was an issue, but the length of the bicycle itself. We adjusted the

handle bars and everything else that could be fixed but it's still not

the perfect fit for him, like the one I had bought originally seemed to

be. Josh wants to just wait and grow into it, since he absolutely loves

the style of this bike, but who knows how long that will take? It can be

frustrating to go from store to store looking for the right sized one,

especially when it's so easy to get a new bike for his sister. I think

you've just convinced me to go get one of those light-weight scooters

Thanks!

Georgina

[Guest guest]

Hello Everyone,

I haven't written in awhile but still read from

the list everyday. (age 9 ) systemic JRA ..he has been in a remission

(medicated) for exactly one year today!!!!! We just lowered his dose of

prednisone to 5 mg (this is the lowest ever for him)..its been 3 days and

good so far..we haven't seen the pedi rheumy in 2 months, He wants to see us

though to talk about growth hormones. It seems like the low dose of preds

still has stunted his growth..he is very sensitive to steroids.. and my guess

is he will have to be totally off the pred to grow..he is still a little

cushiongoid even on 5 mg.He is playing soccer and loves it.. He also just

really learned to ride his bike.. he now can get going and stop with out

falling off, this has really boosted his self esteem, He is so funny he told

me he wanted me to sign him up for a 10 mile bike race they are having here

next weekend!!!! a little over confident but thats ok!!!!!His physical

therapist told me he said that the therapy was ridiculous and a waste of

time!!!! I know he sounds rude but if you can picture it he acts like a

little old man in a 9 yr old body!!!He has always been like that..very mature

in his words and actions...he tells it like he sees it.. the teacher said she

thinks he will be mayor someday! oh well all for now wishing all the kids

the best!! Jane

[Guest guest]

Jane,

I am so happy for you and !!!!!! Holly is the same, my grandmother

has always said Holly has an old soul. AJ

[Guest guest]

In a message dated 09/27/2000 7:17:29 AM Pacific Daylight Time,

Jitz45@... writes:

> . and my guess

> is he will have to be totally off the pred to grow..he is still a little

> cushiongoid even on 5 mg.He is playing soccer and loves it..

My 13 year old plays soccer ( not the one with JRA) it seems to me the best

players are the smaller ones, the fastest, and can seem to move that ball

around so fast. Good luck and good goaling

[Guest guest]

Jane that is good. I think these kids learn so much about the human

condition. Its sounds like your son does. I hope it keps going well SHU

[Guest guest]

Hello,

I've just now read the messages about 's JRA. I'm so sorry to hear

that she's been having recurring pain. I hope you're right about

starting the physical therapy being helpful for her leg pain. You'll

probably learn a lot of useful exercises to do together. Take notes (or

ask for brochures) as they'll probably come in handy in the future I

noticed that you said your daughter is seeing a doctor but ... is it a

pediatric rheumatologist? If so, I'm wondering why s/he hasn't suggested

a more consistent course of NSAIDs? A lot of times our kids with JRA

need to have regular twice-daily dosing of NSAIDs to ensure that they

get a therapeutic level in their bloodstream at all times, unless they

are symptom free for a period of 6 months. A fluctuating level won't be

as efficient in controlling her symptoms. Our children have a rough time

of it sometimes. If there are medications available that will allow them

to be pain and symptom-free, and side effects haven't been troublesome,

I might question the doctor about whether your daughter's JRA is being

treated aggressively enough. If she's having pain and inflammation in

her joints, there is a good chance that there's some destruction going

on within. We want to try to preserve joint function as best we can.

Maybe prevent more problems down the line. I'd ask the doctor about a

more regular schedule of administering her NSAID.

Hope this helps (at least a little),

Georgina

dpalam7733@... wrote:

>

> Well its now 3weeks and had 2 good mornings so I was considering

> cutting back on her medicine to once a day.... But of course I no sooner said

> it and this morning she woke up real stiff and in pain... Although the

> morning is tuff she seems to get better as the day goes on. I am trying to

> hold off as long as possible before changing her medicine I feel she is only

> 4 and I dont want to start changing her medicine unless she really needs to.

> I am hoping by the end of this month it will all go away when the weather

> finally changes. Although she is walking she tends to limp the whole day

> physical therapy starts on Monday hopefuly everything will go back to normal

> soon... I just hope I am making the right decision. Thanks again for

> everyones support....

[Guest guest]

Hi

i feel the same way sometimes tapering off the medicines

but like you said when you think about it something happens

melissa has never liked takeing medication but she understands she has to

till things get better tapering off needs to be gradual

if they are doing ok keep them on that

like you also said the weather is changeing

melissa is doing ok but shes stiff in the mornings and fatigued

at times this disease is a take it one day at a time

i told melissas teachers

that today she make feel great but tonight or tomorrow the whole thing

changes

we take it one day at a time

Robbin

[Guest guest]

-

I don't think the joint injections are that bad. I don't know why it has to

be done in the hospital. My daughter just had it done in her doctor's

office. I put an EMLA patch on the injection site an hour before to numb the

area. She cried when the procedure was done, but mainly because I think it

scared her to be held down. The doctor inserted a needle to drain some of

the fluid out. Then, he inserted another needle with the meds. was

fine shortly thereafter. (Note that when was seeing doctors prior to

being diagnosed, one orthopedic surgeon aspirated her knee with no EMLA, and

that was a traumatic experience, for her and for me). The results were

incredible. Within a few days, her swelling and contracture were almost

completely gone. We have since gone back to the doctor. I thought she might

be upset about going because of the injection experience, but she was fine.

It must not have been that traumatic for her. Hope all goes well.

Diane

[Guest guest]

Hi ,

My 8 year old Hannah is going on the 13th of December for a joint

aspiration/steroid injection of her right knee. This will be the 3rd

time for this knee, her 4th procedure in all of this type. I

absolutely agree that asleep for the procedure is the best way to

go. The first time was fine, because Hannah didn't know what to

expect, but the second time she was fearful, and they held her down

kicking and screaming, and it was obviously traumatic for everyone

involved. This will be the second time Han will be under general

anesthesia for it and there is NO anxiety at all for either of us.

As for the efficacy of the aspiration/injection....I'm beginning to

wonder. The first procedure was on her left knee when she was about

4, and it had magical results. The other two have been done since

April, obviously with results that have been short lived.

I'll be thinking of you and on the 14th, Hannah's procedure

will be freshly done then, so we'll know exactly how you're feeling.

Best of luck to you and keep us updated!!

[Guest guest]

Hi everyone,

I've been reading the board lately but have been too busy to respond.

Almost feel like I've been spying. I don't mean to be. Everyone is so

informative. Just wanted to add my 2 cents worth of experience re-

injections. I would never give my daughter them with out anesthesia.

Reason 1- for the pain/fear factor but also b/c my MD explained that

it is very important that the child not move in order to get the best

possible results. You do not want the cortisone to miss the joint or

leak out by accident. I do know that the feeling when your child is

put out, is about the worst I have ever experienced in my life, but I

think in the long run it is worth it. My daughters' injections are

done by the rheumatologist in the childrens hospital with the ped

anesthesiologist and his assistant so I feel pretty comfortable that

she is at the least possible risk. Good luck to you whatever you do

I'm sure it will be fine. Bonnie

[Guest guest]

hi bonnie, i agree with you completely. it was the most painful procedure i

have ever had done while i was awake and to make it worse, they tried twice

with no success. it was traumatic and i was an adult, i am afraid to try it

again. i have a pretty good tolerance for pain by now, but i have rejected

the idea as recently as just a few weeks ago for my elbow. call me chicken,

brandy

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[Guest guest]

Hi Teri,

Yes, those orthotic devices can be very pricey. I've heard many people

say they were very beneficial though and helped to relieve their pain.

Are they removable, so they can they be worn in different shoes?

Take care,

Georgina

THep115@... wrote:

>

> got her orthotics. All they are is

> plastic inserts for her shoes. She has adapted real weel to them. Can you

> imagine $75 for each piece of plastic? We have to pay a $100 deductible then

> 20% . It's worth it though.

> Tina, welcome to the group. You certainely have

> come to the right place for advice and support. has pauciarticular

> arthritis(meaning it only affects less than 4 joints). is now 3 years

> old and had a diagnosis of jra for over a year .

> Teri

[Guest guest]

got her orthotics. All they are is

plastic inserts for her shoes. She has adapted real weel to them. Can you

imagine $75 for each piece of plastic? We have to pay a $100 deductible then

20% . It's worth it though.

Tina, welcome to the group. You certainely have

come to the right place for advice and support. has pauciarticular

arthritis(meaning it only affects less than 4 joints). is now 3 years

old and had a diagnosis of jra for over a year .

Teri