Growth in JRA

September 5, 2001

How many jra children have had their growth affected and is it

statistically characteristic , for jra adults to be small in stature?

Rusty Limbs

September 5, 2001

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

September 5, 2001

Don,

I forget - how old were you when you were diagnosed? I worry so much about

Robbie. We were visiting friends this weekend - and Robbie looked funny when he

ran - kind of a loping gait - different from before, and I can't tell if he

looks different because of the weight gain with the steriods (8 lbs in 3 weeks!)

- so I was walking around behind him, trying to see if the back of his knees

were at the same height. My friends thought I was crazy - they all tell me how

great he looks - but I see the changes in him and it is really scary. I should

be happy because he is running (some days) - but I want him off the steriods -

though nothing that I read about sounds much better. Thanks for listening!

September 5, 2001

Hey Rusty!

So far all the meds Jordan is on hasn't slowed down his growth. He's

never been on prednisone which I heard can stop/hinder growth in a

child. At his last visit to the rheumy in Aug, he had grown 2cm

since May. (Don't ask me what that is in imperial measure, I'm lost

in metric too! lol) But he has grown some. He's tall for his age

(5), last time I measured he was 47 inches, but weighed only 40 lbs.

They said he'd gained some weight, his big toe did look a little

bigger to me

I know of a couple other kids that are " small " for their age, whether

it be from the meds or not, I'm not certain, one in particular I know

it's from the meds.

Take Care

Lori - mom of Jordan systemic-onset jra

> How many jra children have had their growth affected and is it

> statistically characteristic , for jra adults to be small in

stature?

> Rusty Limbs

September 5, 2001

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

September 5, 2001

Hey rusty I'm 5'4 " now thanks to hip replacements that gave me an inch lol ! I

was also always shorter than class mates. I found out with hip replacements also

that my bone structure on right side is quite a bit more petite than left. Othro

said it was due to prednisone use. (not uncommon) But I have always had a

problem with weight , due to factors like not enough aerobic exercise ,

hypothyroid , and what can I say I'm built like my Daddy lol but he was 6'4 "

(more room for it all ) lol My hands aare also much smaller than anyones in my

family ! How tall are you, Rusty? :):)Tree ..short but mighty lol

Growth in JRA

How many jra children have had their growth affected and is it

statistically characteristic , for jra adults to be small in stature?

Rusty Limbs

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September 5, 2001

Also rusty, just my observation but all the local FACES members with JRA at is ,

are short petite stature.

Growth in JRA

How many jra children have had their growth affected and is it

statistically characteristic , for jra adults to be small in stature?

Rusty Limbs

To manage your subscription settings, please visit:

For links to websites about JRA:

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

September 5, 2001

Thanks Jane, When they tried to lower the dose, Rob's fevers came back too, and

the pain shot up. Now, with the addition of the blood pressure issue and blood

pressure medication at 3 just makes me crazy. My Mom went on and on about them

giving him the bp meds instead of changing his medication or stopping it - but

she didn't see him sick and unable to walk and barely move. I think she is

still in denial - Rob is her only grandchild. Has remained on the

prednisone the entire time? They talk about weaning Rob - but say it will be a

very long process. Yes, the quality of life with it is the whole point - can't

let them suffer. I hope continues to grow now that he is on the low dose.

thanks again.

Rob's mom

September 5, 2001

Thanks Tree - as someone who has been there personally - you understand things I

can't possibly & being a mom you understand me too (scary thought lol). I know

he may be doing things different to cope with his pain and comfort levels - and

even that makes me nuts (he isn't doing this now - is it because he is hurting

even though he tells me he is fine) Sometimes when his doc ask how he is doing

I don't know what to say. But I am hanging in there! Thanks for the

encouragement!

September 5, 2001

Thanks Tree, I will keep that in mind - I responded to your last message and

forgot to sign off appropriately lol - won't forget this time! Thanks for being

there!

aka Vernie

Rob's Mom

September 5, 2001

5 years old, 47 inches and only 40 pds! WOW! he's a bean pole!!!!

Rusty Limbs

On Wed, 05 Sep 2001 12:16:54 -0000 baby_blue11@... writes:

> Hey Rusty!

>

> So far all the meds Jordan is on hasn't slowed down his growth.

> He's

> never been on prednisone which I heard can stop/hinder growth in a

> child. At his last visit to the rheumy in Aug, he had grown 2cm

> since May. (Don't ask me what that is in imperial measure, I'm lost

>

> in metric too! lol) But he has grown some. He's tall for his age

> (5), last time I measured he was 47 inches, but weighed only 40 lbs.

>

> They said he'd gained some weight, his big toe did look a little

> bigger to me

>

> I know of a couple other kids that are " small " for their age,

> whether

> it be from the meds or not, I'm not certain, one in particular I

> know

> it's from the meds.

>

> Take Care

>

> Lori - mom of Jordan systemic-onset jra

>

> > How many jra children have had their growth affected and is it

> > statistically characteristic , for jra adults to be small in

> stature?

> > Rusty Limbs

>

September 5, 2001

I use to mesure 5'4 " but with the back problems now about 2 " shorter,

although on a good day I can straightn up to 5'? "

RustyLimbs

On Wed, 5 Sep 2001 09:13:58 -0400 " theresa sappenfield "

<treesap0@...> writes:

> Hey rusty I'm 5'4 " now thanks to hip replacements that gave me an

> inch lol ! I was also always shorter than class mates. I found out

> with hip replacements also that my bone structure on right side is

> quite a bit more petite than left. Othro said it was due to

> prednisone use. (not uncommon) But I have always had a problem with

> weight , due to factors like not enough aerobic exercise ,

> hypothyroid , and what can I say I'm built like my Daddy lol but he

> was 6'4 " (more room for it all ) lol My hands aare also much smaller

> than anyones in my family ! How tall are you, Rusty? :):)Tree

> ..short but mighty lol

>

> Growth in JRA

>

> How many jra children have had their growth affected and is it

> statistically characteristic , for jra adults to be small in

> stature?

> Rusty Limbs

>

> To manage your subscription settings, please visit:

>

> For links to websites about JRA:

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

>

September 5, 2001

Hi Rusty:

My daughter, Mickey, 7, has only grown 2 inches in 4 years. She has been on

fairly constant high doses of prednisone until a recent 7 week vacation from

it, which sadly came to an abrupt end when she flared. She was in the 90th

percentile for growth from birth, until the arthritis started (at 3). Now

she's not quite on the chart....

Doc's say a combination of disease activity (i.e. her body is too exhausted

dealing with the constant inflammation to grow) and prednisone use. However

small in stature, though, she is mighty in spirit and zest for life!

Lynn

From: DONALD A MORSE <dam755@...>

Reply-

Date: Wed, 5 Sep 2001 00:39:53 -0700

Subject: Growth in JRA

How many jra children have had their growth affected and is it

statistically characteristic , for jra adults to be small in stature?

Rusty Limbs

September 5, 2001

, I was put on cordisone at the onset of my growth spurt, which

was by the way the onset of jra too, it did affect my growth, it is most

apparent in my hands. the fingers on my right hand are and are not as

developed as some on the left hand .

My pinky finger on my left hand is the size of a childs.

Rusty Limbs

On Wed, 05 Sep 2001 10:20:55 EDT carneyval@... writes:

> 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

>

September 5, 2001

Val I agree that it is impossible to watch our children without silently

agonizing over whether or not to raise the issues. We know our children so

well that we pick up on every little nuance. But it can be a dangerous game.

I find with Abbie if I am too concerned about an issue she will follow suit.

So I try hard to let her mention what bothers her instead of me asking if

something bothers her. It works much better and I have a much better adjusted

child. Of course I'm a basket case since I'm not know for holding my tongue

on much of anything. I must say that my husband is a great help here. A

sounding board who knows her as well as I do is a great gift. My prayers are

with you because it is so tough at the start. But I am sure the two of you

will get through this with bells on. I fully believe that God searches long

and hard for special parents for these special children.

God Bless,

Christy

September 5, 2001

Val aka Vernie lol!, I can just see you shadowing Rob's every move , careful to

pounce on the what if's of a limp or a favored side or anything else You make

pick up on. Just don't forget that a changed gait or a limp here now that wasn't

ten minutes ago is often as simple as a coping mechanism that Rob may or may not

be aware that he is doing! I also know that as a mother it's the hardest thing

ever to wonder am I catching everything I need to know ! I agree that weening

steroids is a huge help, I or Donna could speak volumes of the been there done

that on steroids deal, but we were the first and the long term was not known

then. All we understood was we were better at the time. I too am hesitant to use

newer drugs because of possible side effects not known yet. I went the route of

a embrel/metho/folic acid/celebrex cocktail and wound up with Liver damage that

left me 5 months of fall and winter with not even a tylenol. I then had sanity

issues lol but the liver finally snapped back. well I've yacked enough now lol

KEEP SMILIN' Vernie you are a great MOM and I'd much rather have a mom that was

overly caring than one that wasn't!!!!!! :):)Tree:):)

Re: Growth in JRA