Growth in JRA

[Guest guest]

Thanks RL, Rob does complain of foot and hand pain more often than some of his

other complaints. I should have thought of that. He loves to run, and is a

very active 3 year old. Three months before his symptoms started he won a race

at pre-school and was so proud of his little certificate. I hurt so much for

him, when I see his frustation when he doesn't feel well enough to do what he

wants to do. I just have to remember that we all have limitations - some more

visible than others. Rob is smart, kind and interested in everything - but i

can't help being a mom. Take care!

Val

Rob's Mom

[Guest guest]

Thanks Tree, your shadow analogy makes perfect sense! Rob can't write yet (four

next month) though he loves making H's and 8's - he even makes them with his

blocks and Lincoln logs! Anyway - I try to make notes of what he tells me - as

well as the time of day - just started this week so I can answer his Doc's

clearly. I have kept journals off and on through the years myself - and will

encourage him to do it when he is older. Maybe I should ask him to draw

pictures about how he feels. Thanks for being there Tree - we are smiling here

- keep smiling :) :) Val

[Guest guest]

oops sorry about that val it's hard to keep everyones ages straight lol. As for

the art!!! wonderful !!! My art was my best friend often as I was young ..and as

an adult !!! So encourage away. KEEP SMILIN' :)Tree

Re: Growth in JRA

Thanks Tree, your shadow analogy makes perfect sense! Rob can't write yet (four

next month) though he loves making H's and 8's - he even makes them with his

blocks and Lincoln logs! Anyway - I try to make notes of what he tells me - as

well as the time of day - just started this week so I can answer his Doc's

clearly. I have kept journals off and on through the years myself - and will

encourage him to do it when he is older. Maybe I should ask him to draw

pictures about how he feels. Thanks for being there Tree - we are smiling here

- keep smiling :) :) Val

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

Thanks Lynda, I would be very interested in reading that. It has been my

observation through out the years, that all the people I've met who have

had any early onset of a cronic decease, tend to the small of medium body

development.

As with the jra, I was 5'4 " at 12yrs. just before the doctor put me on

cordisone, heavy doseage. I have always felt that was the reason for my

growth being halted.

Rusty Limbs

On Wed, 5 Sep 2001 18:02:08 -0700 (PDT) Lynda Chassey

<arhianrhod@...> writes:

> , that's a good question. A couple of weeks ago, I spent

> a whole day searching the web for studies on JRA outcomes. The

> only one I remember now was a study done by a New Zealand

> general practitioner. The study covered a lot of posibilities,

> including stunted growth. Unfortunately, I had to delete the

> bookmark with the link address since my ISP (Webtv/MSN) doesn't

> provide much space. But I did save the search engines; I'll

> find the study and post the link.

> Lynda

>

> __________________________________________________

>

[Guest guest]

Hi Val,

You're onto something there. Having a younger child draw pictures is a

great way to help them better communicate their feelings. I've seen the

suggestion of having a plain outline of a body and letting the child

draw on the corresponding areas that are hurting and painful in their

own body. Also, talking about the color of their pain. Some pain is

blue, some is red. Asking why the child chooses that color to describe

their feelings and the intensity of their pain. I think these things are

mentioned at the Arthritis Foundation website (?).

Take care,

Georgina

carneyval@... wrote:

>

> Thanks Tree, your shadow analogy makes perfect sense! Rob can't write yet

(four next month) though he loves making H's and 8's - he even makes them with

his blocks and Lincoln logs! Anyway - I try to make notes of what he tells me -

as well as the time of day - just started this week so I can answer his Doc's

clearly. I have kept journals off and on through the years myself - and will

encourage him to do it when he is older. Maybe I should ask him to draw

pictures about how he feels. Thanks for being there Tree - we are smiling here

- keep smiling :) :) Val

[Guest guest]

Sorry to be a few days late with this (just got around to checking emails)

but wanted to chime in about growth and my son (14,pauci jra). He has

been growing like a weed this year! He is now 5'8 " and about 165 lbs. And I

am sure still growing. The dr did say that he is not overweight but still a

big boy - its so hard as they hit puberty - and to be careful because the

excess weight does affect the joints. Most of Chris' problems are in his

feet, ankles and lower back. The dr said the weight will stress the joints.

She said to keep as active as possible and watch the junk food. Luckily, he

is not steroids for his jra. He has had them in the past for his asthma. I

know steriod use will cause wight gain. And also has big feet - always

has! He is now in a 12! He has grown 3 shoe sizes since last fall! Well,

just wanted to let you know someone else has a big kid too and that I think

you are right to watch that weight gain. Michele

Re: Growth in JRA

I worry about Zack a lot. He is such a big boy. He is 11 (turned 11 on Feb.

12) and he's 5'5 " and weighs about 155 pounds. I worry about the weight he

carries since I am afraid too much weight will damage his joints a lot

faster. Does anyone know if this could be a problem for him? I never had to

carry a lot of weight since I was so careful to stay slim through my life to

keep my joints from having to support extra pounds. Thanks, Zeta Oh I

forgot. He has it in his feet and he already wears a size 9 and a half

shoe!!!

[Guest guest]

hi

is 14 and is 4ft 9 or 10 weighs 120pds

the growth is stunted with her

Robbin

[Guest guest]

No problem Tree, I don't expect everyone to remember Rob's age! I guess I

should start putting his age behind his name or something. Rob really enjoys

drawing and coloring and " Arts and Crafts (though it sounds like he is saying

Craps lol - which is odd because he is really every articulate)in school. I

encourage Rob in just about everything that he shows an interest in. Keep

smiling Thanks for being there!

aka Vernie (lol)

Rob's Mom (3, systemic)

In a message dated Sat, 8 Sep 2001 3:20:42 PM Eastern Daylight Time, " theresa

sappenfield " <treesap0@...> writes:

> oops sorry about that val it's hard to keep everyones ages straight lol. As

for the art!!! wonderful !!! My art was my best friend often as I was young

...and as an adult !!! So encourage away. KEEP SMILIN' :)Tree

>

>

> Re: Growth in JRA

>

> Thanks Tree, your shadow analogy makes perfect sense! Rob can't write yet

(four next month) though he loves making H's and 8's - he even makes them with

his blocks and Lincoln logs! Anyway - I try to make notes of what he tells me -

as well as the time of day - just started this week so I can answer his Doc's

clearly. I have kept journals off and on through the years myself - and will

encourage him to do it when he is older. Maybe I should ask him to draw

pictures about how he feels. Thanks for being there Tree - we are smiling here

- keep smiling :) :) Val

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

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

>

>

[Guest guest]

Hi,

Yup. In our case too there was no choice. Quality of life was so greatly

improved. This disease hit really strong. Josh had so many different

joints affected and the pericarditis, pleurisy, enlarged spleen. The

super high fevers twice a day just about every day, and the excessive

fatigue, really took a toll on him too. Even with the NSAID, DMARDs and

prednisone the symptoms still raged on till we finally got the right

combination and dosages of meds to combat it. I used to think sometimes

that it might never let it up. And to think, way back then I really

believed that the steroids were just a short-term thing till he started

responding and that would be that

Aloha,

Georgina

Jitz45@... wrote:

>

> My sons growth was affected by his use of prednisone, it definitley stunted

> his growth, he started the prednisone end of kindergarten year, he is now in

> fith grade and the size of a 7 yr old ( he is 10 1/2) he is 4 ft 3. he has

> grown 2 1/2 inches last year because now he is on a low dose steroid ( 1 mg )

> but during high doses growth completley stopped, but we had no choice as to

> with hold the prednisone, because we had to weigh out the alrernatives,

> without the prednisone he had dai;ly fevers of 105 to 106 and was bedridden,

> with the high dose prednisone ( anout 40 mg ) he was out of the bed in 24 hrs

> and running out in the yard, screaming with joy!!!and the fevers stopped, the

> Dr warned us of side effects of prednisone, but told us we had to consider

> how sick was without it, and the quality of his life..Jane

[Guest guest]

Hi Val,

We don't have any experience with medications for blood pressure but I'm

really happy to hear that Rob hasn't been having those headaches

anymore. Poor little guy.

Sending gentle hugs,

Georgina

carneyval@... wrote:

>

> I am really concerned about this with Robbie, particularly with the prolonged

Prednisolone use.

>

> We have a new med now - Rob started getting severe headaches - which they

attributed to his Blood Pressure - which they say is elevated because of the

Prednisolone and the cyclosporine. So my three year old (four next month!) is

now on Lisinopril for blood pressure! Has anyone had this experience? The med

seems to be working - no more headaches since the first dose! They only have it

in pill form - and after a couple of tries swallowing it with water we finally

crushed it and gave it with pudding. Of course this caused more blood draws -

but he took it like the little man that he is.

>

>

> Rob's Mom

[Guest guest]

Hi Georgina,

Thanks for the hugs - we're sending some back your way. Rob is still headache

free. We take his blood pressure every evening - and it is staying pretty close

to the normal range - they were thinking about raising the dose. He still takes

the med with a spoonful of pudding - he used to want the whole cup in the

morning with the medicine - but I guess I have ruined Chocolate pudding for him

- he never wants it anymore.

Last week we had a chicken pox scare - he had a few unidentifiable marks - and

a recent case in school - so we thought he had been exposed. They drew blood to

check his immunity (he had the vaccine pre JRA days) and to see if he actually

had it - though they said with the high level steriods he would be deathly ill -

so they thought he didn't have it - but I had to keep him home til the immunity

could be confirmed. So three days later they called to tell me that he wasn't

immune, the level wasn't high enough & I was to keep him home until 3 weeks

after the first outbreak (or three weeks following any subsequent cases). So

Friday, after keeping him home all week, I call to find out when the other child

actually had it - only to be told that the original diagnosis was wrong and Rob

wasn't exposed to chicken pox. What a week! Monday Rob had a slight fever -

which along with the marks contributed to the scare - but the rest of the week

he felt pretty good, and loved being home with Mom - so if not for all

stress & trying to make other daycare arrangements it would have been quite the

" vacation " He was very unhappy going back today. Now the Infectious Disease doc

& his pediatrician are telling me that I should find an " in-home " daycare

solution - that being in a preschool daycare setting puts him at too great a

risk with his compromised immune system. I had considered it before - but kept

thinking he would be in school soon anyway. He was so stressed by the previous

daycare change (pre JRA) and took a long time adjusting - I hate to put both of

us through that again - so now I am trying to figure out what is best for Rob.

thanks for listening!

Val

Rob's Mom

In a message dated Sun, 23 Sep 2001 3:53:07 AM Eastern Daylight Time, Georgina

<gmckin@...> writes:

> Hi Val,

>

> We don't have any experience with medications for blood pressure but I'm

> really happy to hear that Rob hasn't been having those headaches

> anymore. Poor little guy.

>

> Sending gentle hugs,

> Georgina

>

> carneyval@... wrote:

> >

> > I am really concerned about this with Robbie, particularly with the

prolonged Prednisolone use.

> >

> > We have a new med now - Rob started getting severe headaches - which they

attributed to his Blood Pressure - which they say is elevated because of the

Prednisolone and the cyclosporine. So my three year old (four next month!) is

now on Lisinopril for blood pressure! Has anyone had this experience? The med

seems to be working - no more headaches since the first dose! They only have it

in pill form - and after a couple of tries swallowing it with water we finally

crushed it and gave it with pudding. Of course this caused more blood draws -

but he took it like the little man that he is.

> >

> >

> > Rob's Mom

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi!

Ok Georgina - did you really have to burst my last bubble - I have really

been clinging to the idea that someday the prednisolone will go away! - though

reality does give me a slap now and then. He has rheumatology and nephrology

appts this week - I am hoping that we will at least begin tapering the dose.

Take care!

Val

Rob's Mom (3, systemic)

In a message dated Sun, 23 Sep 2001 3:52:58 AM Eastern Daylight Time, Georgina

<gmckin@...> writes:

> Hi,

>

> Yup. In our case too there was no choice. Quality of life was so greatly

> improved. This disease hit really strong. Josh had so many different

> joints affected and the pericarditis, pleurisy, enlarged spleen. The

> super high fevers twice a day just about every day, and the excessive

> fatigue, really took a toll on him too. Even with the NSAID, DMARDs and

> prednisone the symptoms still raged on till we finally got the right

> combination and dosages of meds to combat it. I used to think sometimes

> that it might never let it up. And to think, way back then I really

> believed that the steroids were just a short-term thing till he started

> responding and that would be that

>

> Aloha,

> Georgina

>

> Jitz45@... wrote:

> >

> > My sons growth was affected by his use of prednisone, it definitley stunted

> > his growth, he started the prednisone end of kindergarten year, he is now in

> > fith grade and the size of a 7 yr old ( he is 10 1/2) he is 4 ft 3. he has

> > grown 2 1/2 inches last year because now he is on a low dose steroid ( 1 mg

)

> > but during high doses growth completley stopped, but we had no choice as to

> > with hold the prednisone, because we had to weigh out the alrernatives,

> > without the prednisone he had dai;ly fevers of 105 to 106 and was

bedridden,

> > with the high dose prednisone ( anout 40 mg ) he was out of the bed in 24

hrs

> > and running out in the yard, screaming with joy!!!and the fevers stopped,

the

> > Dr warned us of side effects of prednisone, but told us we had to consider

> > how sick was without it, and the quality of his life..Jane

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi Georgina,I'm sorry - I should have worded my post better - I understand that

each child's experience can be different - and you have to find the right

balance. Rob seems to have had so many of the same early symptoms that

did - and they kept telling me that his case was severe that I started having

visions of him being on the steriods forever - and while I don't like what it is

putting his little body through - I certainly don't want to go back to how ill

he was at his second admission to the hospital. The Rheumy told me that they

anticipated that he would be on the Cyclosporin 3 months - and that the steriod

taper would be very slow. How soon did they add a DMARD? Rob had the

prednisolone on an alternate day schedule when they were tapering the treatment

for his Minimal Change Disease - and was on that schedule when he was first

diagnosed with the JRA - he started having fevers and pain every other day - it

took about a week for me to realize steriod day, non-steriod day - at first I

think the doctor thou

ght I was crazy - he'd have a bad night - the next day I would take him in and

he would be playing, happy and active and afebrile - then i would call the next

day. Whew!

I am in high ramble mode today - better close. Thanks for all of your help and

information - I picture an angel with a lei there in Hawaii! Bless you!

Val

Rob's Mom

In a message dated Mon, 24 Sep 2001 4:30:15 PM Eastern Daylight Time, Georgina

<gmckin@...> writes:

> Hi Val,

>

> Oh no! Val, I definitely should have prefaced that with something like;

> the experience we've had is somewhat unusual. For the majority of

> children, short-term corticosteroid therapy is considered the norm.

> Every child is unique and may respond differently to the various

> treatments. Most are able to taper their dose of prednisone more

> efficiently and many discontinue it lots more quickly than my son,

> especially after a DMARD (or two) is introduced.

>

> In some ways I think our experience is among the worst-case scenarios

> but then looking at it from a different perspective, that's not really

> correct either ... because at this point does have relatively

> good control of the symptoms and his joints have not sustained the type

> of major damage that the aggressive form of this disease has the

> potential to cause. Which leads back to ... if he didn't have such

> aggressive JRA, we would not have needed to treat it so aggressively. He

> would not have needed the long-term steroid therapy. But even though

> this is the way it worked out in his case, and we had no real way of

> knowing that with any certainty six years ago, the overall results have

> been more positive than I could have imagined back then.

>

> Rob hopefully will respond better, earlier, than did. The one bit

> of advice that I would offer is that as time goes on, IF it's possible,

> I think it's advisable to switch to an alternate day dosing schedule

> rather than taking the steroids every day. That's something that I still

> think would have made a world of difference for us but I think he had

> been taking them daily for too long before we first tried, or maybe his

> arthritis was just too persistently active for it to work for us. From

> what I understand, when long-term steroid use is indicated an alternate

> day schedule really helps to prevent some of the common adverse side

> effects.

>

> I hope Rob's doctor visits go well, Val. You'll both be in our thoughts.

> Aloha,

> Georgina

>

> carneyval@... wrote:

> >

> > Hi!

> > Ok Georgina - did you really have to burst my last bubble - I have really

been clinging to the idea that someday the prednisolone will go away! - though

reality does give me a slap now and then. He has rheumatology and nephrology

appts this week - I am hoping that we will at least begin tapering the dose.

> > Take care!

> > Val

> > Rob's Mom (3, systemic)

> > In a message dated Sun, 23 Sep 2001 3:52:58 AM Eastern Daylight Time,

Georgina <gmckin@...> writes:

> >

> > > Hi,

> > >

> > > Yup. In our case too there was no choice. Quality of life was so greatly

> > > improved. This disease hit really strong. Josh had so many different

> > > joints affected and the pericarditis, pleurisy, enlarged spleen. The

> > > super high fevers twice a day just about every day, and the excessive

> > > fatigue, really took a toll on him too. Even with the NSAID, DMARDs and

> > > prednisone the symptoms still raged on till we finally got the right

> > > combination and dosages of meds to combat it. I used to think sometimes

> > > that it might never let it up. And to think, way back then I really

> > > believed that the steroids were just a short-term thing till he started

> > > responding and that would be that

> > >

> > > Aloha,

> > > Georgina

> > >

> > > Jitz45@... wrote:

> > > >

> > > > My sons growth was affected by his use of prednisone, it definitley

stunted

> > > > his growth, he started the prednisone end of kindergarten year, he is

now in

> > > > fith grade and the size of a 7 yr old ( he is 10 1/2) he is 4 ft 3. he

has

> > > > grown 2 1/2 inches last year because now he is on a low dose steroid ( 1

mg )

> > > > but during high doses growth completley stopped, but we had no choice as

to

> > > > with hold the prednisone, because we had to weigh out the alrernatives,

> > > > without the prednisone he had dai;ly fevers of 105 to 106 and was

bedridden,

> > > > with the high dose prednisone ( anout 40 mg ) he was out of the bed in

24 hrs

> > > > and running out in the yard, screaming with joy!!!and the fevers

stopped, the

> > > > Dr warned us of side effects of prednisone, but told us we had to

consider

> > > > how sick was without it, and the quality of his life..Jane

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>

[Guest guest]

Hi Val,

Oh no! Val, I definitely should have prefaced that with something like;

the experience we've had is somewhat unusual. For the majority of

children, short-term corticosteroid therapy is considered the norm.

Every child is unique and may respond differently to the various

treatments. Most are able to taper their dose of prednisone more

efficiently and many discontinue it lots more quickly than my son,

especially after a DMARD (or two) is introduced.

In some ways I think our experience is among the worst-case scenarios

but then looking at it from a different perspective, that's not really

correct either ... because at this point does have relatively

good control of the symptoms and his joints have not sustained the type

of major damage that the aggressive form of this disease has the

potential to cause. Which leads back to ... if he didn't have such

aggressive JRA, we would not have needed to treat it so aggressively. He

would not have needed the long-term steroid therapy. But even though

this is the way it worked out in his case, and we had no real way of

knowing that with any certainty six years ago, the overall results have

been more positive than I could have imagined back then.

Rob hopefully will respond better, earlier, than did. The one bit

of advice that I would offer is that as time goes on, IF it's possible,

I think it's advisable to switch to an alternate day dosing schedule

rather than taking the steroids every day. That's something that I still

think would have made a world of difference for us but I think he had

been taking them daily for too long before we first tried, or maybe his

arthritis was just too persistently active for it to work for us. From

what I understand, when long-term steroid use is indicated an alternate

day schedule really helps to prevent some of the common adverse side

effects.

I hope Rob's doctor visits go well, Val. You'll both be in our thoughts.

Aloha,

Georgina

carneyval@... wrote:

>

> Hi!

> Ok Georgina - did you really have to burst my last bubble - I have really

been clinging to the idea that someday the prednisolone will go away! - though

reality does give me a slap now and then. He has rheumatology and nephrology

appts this week - I am hoping that we will at least begin tapering the dose.

> Take care!

> Val

> Rob's Mom (3, systemic)

> In a message dated Sun, 23 Sep 2001 3:52:58 AM Eastern Daylight Time,

Georgina <gmckin@...> writes:

>

> > Hi,

> >

> > Yup. In our case too there was no choice. Quality of life was so greatly

> > improved. This disease hit really strong. Josh had so many different

> > joints affected and the pericarditis, pleurisy, enlarged spleen. The

> > super high fevers twice a day just about every day, and the excessive

> > fatigue, really took a toll on him too. Even with the NSAID, DMARDs and

> > prednisone the symptoms still raged on till we finally got the right

> > combination and dosages of meds to combat it. I used to think sometimes

> > that it might never let it up. And to think, way back then I really

> > believed that the steroids were just a short-term thing till he started

> > responding and that would be that

> >

> > Aloha,

> > Georgina

> >

> > Jitz45@... wrote:

> > >

> > > My sons growth was affected by his use of prednisone, it definitley

stunted

> > > his growth, he started the prednisone end of kindergarten year, he is now

in

> > > fith grade and the size of a 7 yr old ( he is 10 1/2) he is 4 ft 3. he has

> > > grown 2 1/2 inches last year because now he is on a low dose steroid ( 1

mg )

> > > but during high doses growth completley stopped, but we had no choice as

to

> > > with hold the prednisone, because we had to weigh out the alrernatives,

> > > without the prednisone he had dai;ly fevers of 105 to 106 and was

bedridden,

> > > with the high dose prednisone ( anout 40 mg ) he was out of the bed in 24

hrs

> > > and running out in the yard, screaming with joy!!!and the fevers stopped,

the

> > > Dr warned us of side effects of prednisone, but told us we had to consider

> > > how sick was without it, and the quality of his life..Jane

[Guest guest]

Dear Val , I was just wondering what meds Rob is on, that has compromised

his immune system.. I always worried about this with my son was on high

dose steroids, but they seemed to play it down.. Jane

[Guest guest]

Hi Jane

Rob is on Prednisolone (27 mg/day) and Cyclosporine (they just raised the dose

so I am not sure of the mg total but I think it is 70 mg/day) - Both compromise

or suppress the immune system. The steriods have a major affect - and it makes

Rob's pediatrician as well as the rheumatologist and nephrologist very concerned

about exposure to contagious diseases. They have suggested that I take Rob out

of preschool and put him in another enviroment where he comes in contact with

fewer children - so they are really serious about it. Also he can't get his

routine vaccines when he turns 4 next month (yikes! next week!) because the live

virus's can have a bad affect because of the steriods. It is kind of a Catch

22 - they need the meds or they suffer terribly, the meds make them more

susceptible to contagious illness, which in turn can cause a flare (and in Rob's

case a relapse of his nephrotic syndrome as well). Poor kids. I am not sure

how quickly the immune system rebuilds itself once the medication is discont

inued or lowered - I have read so much now I have to re-read things to remind

myself - it is all running together. I hope is doing well!

Val

Rob's Mom (3, systemic)

In a message dated Tue, 25 Sep 2001 6:22:40 PM Eastern Daylight Time,

Jitz45@... writes:

> Dear Val , I was just wondering what meds Rob is on, that has compromised

> his immune system.. I always worried about this with my son was on high

> dose steroids, but they seemed to play it down.. Jane

>

>

> For links to websites about arthritis and JRA, visit:

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

>

>