I am new too

[Guest guest]

Hi Diane,

I went thru that same situation at age 12, it was very difficult and to make

matters worse when I went in the hospital all the girls who had been my

friends just forgot about me. If I wasn't in school and up on the latest

gossip then they had nothing to talk to me about. There is another list on

onelist JRA-kidsonelist that is for kids with JRA to be able to talk

about their lives. There are only 3 kids there right now, but she might be

able to find a pen pal or something. My daughter is only 8.5 and doesn't

have JRA, but she loves pen pals and having grown up with my JRA she knows

quite a bit on the subject. If your daughter <or anyone else's> would like

to write to her, her email address is PoncaKitty@...

Debbie

With Gods blessings,

The Schuh Family

Dan, Debbie, Dottie, Kody and Wyatt

Hello Everyone,

My name is Diane, I have a daughter with Poly JRA. She is almost

13. She was diagnosed almost 3 years ago. It has been very

interesting reading all of your comments. I wish I had found this

site earlier. My daughter has just recently come out of remission.

:-( She was in remission for about 5 months, and then came down

with a terrible flare. I think that, that was harder for her then

when she originally was diagnosed. I was wondering if there is

anyone else out there with a daughter in the Jr. High age who is

dealing with this. This is such a hard time in her life to

be " different " . Although she does very well (was on the basketball

team etc.) I know that she gets very depressed because of it. My

prayers are with all of you. I am so glad I found all of you!! I am

also getting real good at deleting!! Ha ha.. Diane

For links to websites with JRA info visit:

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

[Guest guest]

Georgina,

Thank you for responding. My daughter (the 12 yr. old) has most of her

problems in her neck, hands, feet, hips..well almost everywhere. She has

been on Metho. for a couple of years. She had the most incredible response

to it. She went from not being able to walk to completely normal. She did

real well off of it for 5 months and then we put her back on it when she

flared. We also had to use Prednisone this time. (which I swore I would

never do), but when your child is in agony you will do anything. It actually

wasn't as bad as I thought, I was worried for nothing and it did help her.

The thing with my daughter is that she is in complete denial about her

arthritis. She just doesn't want to deal with it. She is embarrased by it,

doesn't want to talk about it, etc. How much of it is adolescent hormones

and how much of it is stubborness, who knows. Thanks for all of your kind

words. Love, Diane

[Guest guest]

Hi Diane...my daughter Ashton is also 13 years old & has poly JRA... She was

dx about a year ago...... So I can relate ... any questions or if you just

want to talk... I'm here .... Kris

[Guest guest]

Hi Diane..sorry for the short message earlier but my daughter was reading

over my shoulder!!! ha ha ..My daughter too is at times in such a denial and

depression. It is a very hard age without medical problems so when you add

something like this it's so hard. especially when I can't tell her what

tomorrow will bring. My daughter has a few e-pals..... your adughter could

e-mail mine anytime.... at dkakheath@...

her name is Ashton.... God Bless Kris

[Guest guest]

Diane

I know exactly how you feel my daughter age 11 is also in denial. It

was a consant fight over her eating and drinking ensure with each meal.

Untill the other day when the doctor weighed her she had gained 6 pounds.(she

lost 30 previously). Now she says " okay mommy maybe your right "

MIchele

[Guest guest]

Hello Everyone,

My name is Diane, I have a daughter with Poly JRA. She is almost

13. She was diagnosed almost 3 years ago. It has been very

interesting reading all of your comments. I wish I had found this

site earlier. My daughter has just recently come out of remission.

:-( She was in remission for about 5 months, and then came down

with a terrible flare. I think that, that was harder for her then

when she originally was diagnosed. I was wondering if there is

anyone else out there with a daughter in the Jr. High age who is

dealing with this. This is such a hard time in her life to

be " different " . Although she does very well (was on the basketball

team etc.) I know that she gets very depressed because of it. My

prayers are with all of you. I am so glad I found all of you!! I am

also getting real good at deleting!! Ha ha.. Diane

[Guest guest]

Kris,

I am glad I am not alone with a depressed 13 year old girl with JRA. You

are right, it is hard enough being that age, let alone this. Your daughter

can also e-mail my daughter. Her name is ne and her address is Chozin

grl @aol.com. I feel so sorry for them. This must be so hard for them to go

through. If there is anything different about you at this age, it is the

" end of the world " . Thanks for your support! I am here for you too.

Blessings, Diane ;-)

[Guest guest]

Michele,

I know how that goes. They don't want to believe you, but then they see

that you are right. My daughter has the low weight problem too. It is so

amazing to read how other people are going through the same thing. I always

wondered if her low weight was really because of her arthritis.She lost a

tremendous amount of weight when she first came down with her arthritis My

daughter drinks Boost. I think it is about the same thing as Ensure. It has

helped my daughter put on a few pounds too. Luckily she likes to drink it.

Thanks for your comments. Love, Diane

[Guest guest]

Weight is a very common problem, once while I was at PT when I was around 13

a boy walked up to me and asked if I had " failure to thrive " , I looked at

him like he was crazy but my mother still laughs when I bring it up.

I don't know if you have tried it yet, but I HATED ensure, my mother would

put it in the blender with some ice cream and a little vanilla and it made a

terrific shake <and added more calories too>

Hugs,

Deb

With Gods blessings,

The Schuh Family

Dan, Debbie, Dottie, Kody and Wyatt

Michele,

I know how that goes. They don't want to believe you, but then they see

that you are right. My daughter has the low weight problem too. It is so

amazing to read how other people are going through the same thing. I always

wondered if her low weight was really because of her arthritis.She lost a

tremendous amount of weight when she first came down with her arthritis My

daughter drinks Boost. I think it is about the same thing as Ensure. It has

helped my daughter put on a few pounds too. Luckily she likes to drink it.

Thanks for your comments. Love, Diane

[Guest guest]

hello When first got sick she had failer to thrive at that point she

would eat nothing drink very little 8oz a day if we were lucky it is very

scary , you can try to give all the drinks you want when they do not want to

go they just do not but then they started the pred and wow she was hungry it

took us a year to get her to 30 lb now she is 31 lb and holding lol well

good luck

>From: " The Schuh Family " <dschuh@...>

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>Subject: RE: I am new too

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>

>Weight is a very common problem, once while I was at PT when I was around

>13

>a boy walked up to me and asked if I had " failure to thrive " , I looked at

>him like he was crazy but my mother still laughs when I bring it up.

>

>I don't know if you have tried it yet, but I HATED ensure, my mother would

>put it in the blender with some ice cream and a little vanilla and it made

>a

>terrific shake <and added more calories too>

>

>Hugs,

>Deb

>

>With Gods blessings,

>The Schuh Family

>Dan, Debbie, Dottie, Kody and Wyatt

>

>

>

>Michele,

> I know how that goes. They don't want to believe you, but then they see

>that you are right. My daughter has the low weight problem too. It is so

>amazing to read how other people are going through the same thing. I

>always

>wondered if her low weight was really because of her arthritis.She lost a

>tremendous amount of weight when she first came down with her arthritis My

>daughter drinks Boost. I think it is about the same thing as Ensure. It has

>helped my daughter put on a few pounds too. Luckily she likes to drink it.

>Thanks for your comments. Love, Diane

>

>

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

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>

>For links to websites with JRA info visit:

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

>

______________________________________________________

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[Guest guest]

Wow Deb!!1 Thabks for thr great idea... I'm gonna try it!!! My daughter hate

the ensure & boost! But we have got to do something she is 13 and weighs 67

pounds & is not a short person!!! Alot of kids ask her if she's anorexic or

if she eats .. it is very upsetting for her! Thanks again I'm gonna give this

a try!!! Kris

[Guest guest]

Kris,

My daughter who is almost 13, also gets asked if she is anorexic. She is

5' 1 " and weighs 80 lbs. It seems that if you are underweight people think

they can just comment about it. Her basketball coach told me to take her

home and feed her, that she was too skinny. I just thought how rude, does

she think I am starving her? Luckily my daughter has learned to just ignore

the comments. We have to just teach them to deal with it I guess. My prayers

are with all of you. I am glad we have each other to talk to. :-)

Love, Diane

[Guest guest]

Hi Diane,

Glad to hear Ashton is not the only one. It is amazing what people feel

they can say when your child is underweight. They seem to think we must

starve them or like them being that way. I have told my daughter to ignore

these comments and for the most part she does pretty good with that. But then

there are the days when she goes into meltdown. When her buttons have just

been pushed enough. We go to the Rheumatologist tomorrow going to find out

about possibly going to the injectable form of Methotrexate as the oral form

makes her very sick. The dr's have always said to give it to her on a wekend

but it seems to me that then we are choosing ...either they miss a day of

school or they loose their weekend. And at this point I try to encourage her

socially so I feel like I'm between a rock & a hard place! Well enough

babbling for now gotta run...... Talk to you soon. Praying for a cure ...kris

[Guest guest]

Hi Diane,

I have a 13 year old boy, in 7th grade, with Poly JRA. He has had it for

4 1/2 years. He is a basketball player as well. Welcome to our group,

I think you will find it very helpful. Does your daughter have any aversion

to talking to boys? Judging from the number of calls and e-mails he gets

from girls, I think he would be willing to send a message to your daughter.

He needs a peer to talk to as well. He doesn't know anyone with JRA.

By the way, his name is Robbie. Where are you from?

Jana

[Guest guest]

Hi Diane,

Yes, I think it is the age! Robbie wants to quit seeing doctors and just

take Prednisone! He is blaming me for making him take meds and go

to the doctor. On the other hand, I am seeing such a huge increase in

maturity in other ways, it makes me very happy. A year ago he didn't

even like to spend the night somewhere else. Now he goes and does

with great confidence. (He is returning today from a trip to his grand

parents in Arizona, he went by himself.) He is very small, but he

doesn't let people bully him ... he is beginning to communicate, even

with adults very well, while he used to be very shy. I think I am trying

to say that there is a silver lining to this disease. Dealing with this

adversity can make these kids very strong in other ways.

Jana

[Guest guest]

hi Jan ...alittle off topic but I had to chuckle about the comment of your

son getting cals from girls!!! I have a 13 year old daughter ..... I think

the phone has grown attached to her body at times!!! lol Glad to hear that

your son is doing so well.

Kris

[Guest guest]

Jana,

You are right about the maturity thing. My daughter has matured

tremendously from having to deal with this. And it does make them stronger.

I guess that is something good that can come from this. Sometimes she is the

one comforting me, that is when she is not mad at me from making her do her

blood work etc. ha ha..

Robbie and my daughter ne are exactly the same age and grade level. I

think she would not mind talking to a boy, especially one with Poly JRA like

her. He can e-mail her at Diane656@.... My daughter's name is ne.

We are in California, how about you?

Praying for all, Diane

[Guest guest]

Kris

What kinds of things did Deb recommend for your daughter to gain weight.My

daughter is 11 and is also often asked if she anorexic-Michele

[Guest guest]

Hi Michele,

I don't have a LOT of pearls of wisdom, but I do not that ensure was/is

yucky. What my mother had come up with to get me to drink it was making a

milk shake in the blender by putting a few scoops of ice cream, a capful of

vanilla and a can of insure. If you really want to add some calories and if

your child will drink it, you can add a spoonful of MALT, but I hated that

too.

Other tips my nutritionist had given us were... Peanut butter is high in

fat, so is cheese basically all the things that you would avoid if you were

on a diet. The sad thing is, at 15 and 5'5 I was down to 79 lbs, my doctors

were threatening to put me in the hospital and insert a feeding tube. 3

years later when I went in to remission I promptly ballooned up to a hefty

180 and then they complained about the stress on my joints.

My best tip is to stress healthy eating habits and then subliment those with

the milk/insure shake.

Hugs,

Deb

With Gods blessings,

The Schuh Family

Dan, Debbie, Dottie, Kody and Wyatt

Re: I am new too

Kris

What kinds of things did Deb recommend for your daughter to gain weight.My

daughter is 11 and is also often asked if she anorexic-Michele

[Guest guest]

Hi Michele..... Sorry i'm late in getting back to you ... I see that Deb has

already answered you! I am gonna give it a try for sure. nything at this

point ...my daughter is 13 5'1 " and weighs 69 pounds as of yesterday so we

will do anything we can!!! We have startred also pushing bread & butter with

her meals. And if she asks for a snack.... she gets it!!! Good Luck with your

daughter ..... Keep us updated...

My prayer for a cure........Kris

[Guest guest]

Hi Diane,

I was just wondering .... during that 5 months when your daughter was

doing really well, did she need to take any medicines at all, or was she

in a true remission? It must have been so hard for her, to be well and

then for it to start all over again, with a vengeance. No wonder these

kids get discouraged sometimes. Who wouldn't When they gave her

prednisone then, do you remeber what dose it was? Was it a really high

dose with a quick tapering, or did it last longer? I'm glad she didn't

get any noticeable bad side effects, and that it helped her through the

rough time.

How old was your daughter when she got JRA? Maybe that makes a big

difference for some? I can see how if it strikes at a later age, after

certain skills and abilities have been mastered and then those same

abilities are threatened or made more difficult because of it, it would

be harder. My son isn't embarrassed about having JRA. His friends all

know, they don't pick on him about it. He's not really singled out

because of it. Everybody's got their own issues to deal with, this is

one of his. It's not usually a topic of their conversation though. He'll

answer their questions about it but doesn't just volunteer info. Unless

it's to say well, I don't want to ride my bike today because I'm really

sore, or something like that. It may be different for boys and girls. I

guess girls tend to get deeper about emotional issues, while boys often

focus more on actions.

Well, thanks for your messages. And i'm glad that others have shared

their input too, especially those who have daughters around your

daughter's age

Much Aloha,

Georgina

Diane656@... wrote:

>

> Georgina,

> Thank you for responding. My daughter (the 12 yr. old) has most of her

> problems in her neck, hands, feet, hips..well almost everywhere. She has

> been on Metho. for a couple of years. She had the most incredible response

> to it. She went from not being able to walk to completely normal. She did

> real well off of it for 5 months and then we put her back on it when she

> flared. We also had to use Prednisone this time. (which I swore I would

> never do), but when your child is in agony you will do anything. It actually

> wasn't as bad as I thought, I was worried for nothing and it did help her.

> The thing with my daughter is that she is in complete denial about her

> arthritis. She just doesn't want to deal with it. She is embarrased by it,

> doesn't want to talk about it, etc. How much of it is adolescent hormones

> and how much of it is stubborness, who knows. Thanks for all of your kind

> words. Love, Diane

[Guest guest]

Hi Diane,

I'm glad your daughter has such a positive attitude about it. (kris,

Ashton, too!) It's hard. People can be so rude sometimes, not even

realizing that their off-handed comments can hurt deeply. It must be

bothersome for her. For my son, I guess the issue for him is his lack of

height, short staure. He's still just 3 feet 11 inches (10 1/2 inches by

some measurements). He's the littlest boy in his 5th grade. They don't

really label him as such though. Instead, it's oh you're that smart kid!

You always get on the Honor Roll. Or, you're the one that won all those

art contests! So, we tend to focus on those more positive traits. He

knows he's short. For now, he seems okay with it.

Thanks for writing

Aloha,

Georgina

Diane656@... wrote:

>

> Kris,

> My daughter who is almost 13, also gets asked if she is anorexic. She is

> 5' 1 " and weighs 80 lbs. It seems that if you are underweight people think

> they can just comment about it. Her basketball coach told me to take her

> home and feed her, that she was too skinny. I just thought how rude, does

> she think I am starving her? Luckily my daughter has learned to just ignore

> the comments. We have to just teach them to deal with it I guess. My prayers

> are with all of you. I am glad we have each other to talk to. :-)

> Love, Diane

[Guest guest]

Holly gets sores all the time. One of the things that you can do, but rheumy

has to give you a script is folic acid, or leucovorin. That helps so people,

not holly though, she has been plagued with quite a few mouth sores lately.

One of the other things is called " magic mouthwash " . It is something that the

pharmacist have to mix for you. It has maalox, benadryl and lidocaine. But

you also need a script for that. The kids can either swish and spit (not

swallow) or you can dab it on with a swab. That's what I do with holly. Hope

that helps keep me posted :-) AJ

[Guest guest]

drese does the maaloxx/bendryl together for the mouth sores, but we also use

mylanta and bendryl together too and you can mix these yourself and it

really works for us. we also use the lidocaine too as needed.we use the

lidocaine after she gargles if needed. by using the these meds. together

every 2 hrs. her mouth has healed up pretty good.

sweetpea200001

[Guest guest]

Angel get some bendryl and maalox and mix them together and let her gargle

with it every 2 hors. and it will help my daughter does it even at school

daily and the mouth sores are gone. also get your dr. to prescribe her some

lidocaine to num her mouth or you can get the dr. to have all 3 mixed for u

like i saw while reading my mail earlier and they work too.

sweetpea200001