Hi i'm new

[Guest guest]

Hi my name is Michele this JRA is new to me we just found out 3 days ago that

my daughter has it. My family is very afraid we don't know what to expect. We

go to see the reumatalogist next week and are even afraid of that. What

should we expect to happen on the first visit? I emailed you guys a few days

ago but knowone responed to me. Please, I just would like to be able to tell

my daughter something about her up and coming visit. Thanks

[Guest guest]

,

Hi my name is Ywellen my daughter was just dxed in Aug. '99 with JRA. Would

you tell us what some of her symptoms are so we can tell you what we know

about your daughter's condition, because there's different types of JRA. My

daughter has Polyarticular JRA this is were swelling takes place in 5/more

joints(hands,feet,jaws,wrist,ankles and etc...) someone else can tell you

about their kid's with jra symptoms. Maybe even can share some things

with you because she has lived her childhood and now a young adult with JRA.

SWEETPEA20001@...

[Guest guest]

hi michelle, i am sorry no one responded before. i am turning 23 next month

and have had jra since i was 5. on her first visit to the rheumy, you can

expect a lot of x-rays and measurements on how far each of her joints bend.

they'll also do bloodwork to check levels on all kinds of stuff, like her

rheumatoid factor. they may also do a trial on some kind of med to see how

she responds, but be careful with that, sometimes they don't go well. i

wish you the best of luck and will answer anything i can for you. take

care, brandy

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[Guest guest]

hi again michelle. i should've told you a little more about my jra. i have

systemic jra which means it affects all systems of body, all joints, organs,

and everything. i haven't had any trouble with any organs other than my

kidneys. i haven't had any eye trouble or anything like that. i have

severe joint destruction, swelling, and sometimes i hurt, but i have had 5

total joint replacements and now i can do almost everything a normal person

can. the only thing i absolutely cannot do is reach my feet. i have a

great life and have adapted well to this disease. i hope i can say

something to help you and your family. how old is your child? what have

you noticed her having trouble with? walking?sitting?getting

dressed?getting off the floor?climbing stairs? those are the things that my

grandmother eventually noticed i did " funny " , keep a look out for things

like that. please let me know if i can be of better help. thanks, brandy

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[Guest guest]

There is nothing to be afraid of from the rheumatologist. But if you are

like me, I get scared that I may get bad news. It depends on what kind of

JRA your daughter has and how bad it is, if they start medication or not.

There are three types of JRA. Usually the first line of defense are

NSAID's. These are drugs like advil, aleve, or stronger ones that are

prescription such as naprosyn or indomethacin. Sometimes they will try

these for 6-8 weeks, and if there is still bad arthritis, then they might

move up to plaquenil or methotrexate. Sometimes steroids are needed in

systemic JRA to get the rashes, fevers, and organ enlargement in control.

Our daughter is living a normal life now and she was diagnosed 5 months ago

with systemic JRA. One thing you will find is that every child is

different, so the doctor can't give you specifics like when will the disease

end, etc. Keep reading, and you can learn a lot here by reading all of the

posts. The children are all ages here with all of the different types of

arthritis.

Re: Hi I'm new

>Hi my name is Michele this JRA is new to me we just found out 3 days ago

that

>my daughter has it. My family is very afraid we don't know what to expect.

We

>go to see the reumatalogist next week and are even afraid of that. What

>should we expect to happen on the first visit? I emailed you guys a few

days

>ago but knowone responed to me. Please, I just would like to be able to

tell

>my daughter something about her up and coming visit. Thanks

>

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>

[Guest guest]

Hi Michele,

How old is your daughter??? What were the symptoms that alerted your

dr to make teh JRA diagnosis.?? In our case the first visit was a long one.

It involved a lenghty history and then am exan of her joints and joint

movement. She also had an x-ray and blood work. My daughter was put on an

nsaid to begin with because they still were not sure of teh diagnosis. Later

she was put on Methotrexate. My daughter is 13 and has Polyarticular

arthritis. This is a grea place to ask questions or just share. Best of luck

to you at the Rheumatologists ...I hope you keep us informed!!

Kris

[Guest guest]

Just try to be as positive as you can. My daughter (2) was diagnosed just 2

weeks ago and we have had success with Naprosyn so far. It all depends on

sever your daughters symtoms are. Did she get high fevers or a rash? Has

she had surgery to remove fluid from any of her joints? Unfortunately, JRA

is a " wait and see " kind of a disease. Our doctors told us that most, not

all, kids with JRA can lead a normal life as long as they take their

medication.

Talk to you later, Tim

[Guest guest]

Dear brandy,

I hope things are getting better for you.

Have you noticed that your JRA has gotten worse or better since your

childhood? Were you able to participate in any sports in high school? Have

you lead a normal life other than the medication? We still have many

unanswered questions for our own daughter who just turned 2.

We were told by our doctor in Indianapolis that 80 to 90 percent of kids that

have JRA get much better by the age of 14 or until they reach puberty. Did

you notice any improvement? This is the one thing that is keeping us positive

through all of this.

Talk to you later, Tim

[Guest guest]

hi. this is my first letter. our daughter kayla now 8 first had signs of jra

when she was2. we noticed her knees swollen . 2 weeks ago she had a rash we

though it to be poison oak, we had just come from grandmas house and she

lives in the country.we thought since they were playing in the woods that

that was what had happened,well

since she has been fine for 4 yrs we never knew this was jra she had been

fine no problems at all. but the rash, fever,and with in 3 to4 days my child

couldn't scratch her nose, move her legs,arms,the pain was so bad she would

scream out in pain if you touched her.or took her hand. Since this past

friday she has gone to see her old Rhemmatoid DR. she put her on naproxen 3

times a day. it seems to help the nights are better she sleep better, i give

her a bath 3 times a day before we do her excerises.this seems to help also,

i never in my life thought i'd see my child in so much pain i would go some

where and cry myself. i just hope we can get her back to her old self and

keep her that way. will that ever happen again?

JOANN STORAY

[Guest guest]

thanks guys for all the info and support. My daughter is 11. The doc

thinks thinks pauciarticular is the JRA has but we'll know more this

week when we see the reumy. I am so glad I disovered you guys, you actually

seem to know more than my ped.last night was in a lot of pain her back

was hurting I gave her 1 ibuprofen it didn't work so I gaveher another and

she felt better. This morning she was fine. I first knew something was wrong

because she complained of her knee hurting I thought nothing of it untill,

acouple of weeks ago I helped her undress and I saw she was just skin and

bones.She had lost over 20 pounds. too is a cheerleader so I didn't

worry to much about the knee, but the weight freaked me out.And thats how it

all started. I'm still trying to deal with the guilt of not noticeing the

weight earlier and not taking the knee serious.How are you guys handleing

your kids PE classes or gym class? Do you have letters on file with the

school explaining your childs condition? Thanks Michele (my claim to fame

and s mom)

[Guest guest]

tim

my daughter is 11. and we are trying very had to keep a positive outlook.

She had a rash a few months ago on her chest. Her biggest problem is her

weight loss. She's drinking 3 ensure pluses a day and has gain 6 of her 28

pounds back. michele

[Guest guest]

Michele,

Afetr my dughter was diagnosed I had a meeting with the school & the

teachers. They have been very good as far as the PE goes. Ashton sets her own

limits without having to worry that she will be graded or treated

differently. I have to say her Pe teacher has been the best one at her

school. Your rheumatolgist can also give you guidelines regarding school

don't be afraid to ask!!! Take a list of questions with you when you go

....it's very easy to get into the office & forget something. Hope all goes

well with your visit ...let us know ......... Kris

[Guest guest]

Dear Joann, My daughter n has systemic JRA, and was like your

daughter just in November. There were times that n could not move or

w\alk. It is a full blown flare. n was put on naprosyn and did okay,

not great, but okay for December and January. She was extremely tired, and

still had fevers. Then in mid-February she flared again real bad, and this

time we had to put her on steroids. She had headaches, stomachaches, and

complained of her abdomen. Which we later found out was an enlarged liver

and spleen. Within about 2 days she was her old self. We hated to start

the steroids, but we knew it could save her life with the organ enlargement.

She was put on 20 mg, she is 11, and we have tapered them for the last

month. Right now she is on 6mg and doing fine. We go down every five days

by 1 mg at this point. She was also put on plaquenil at the same time. It

can take 6-8 weeks to become effective, and if it doesn't work, then we may

move up to mtx. Right now she is in school full time and has no arthitis.

She is stiff in the morning a little bit, and she isn't up to full energy

level yet, but is about 95% there. She has no fevers, but she still gets

the rash a tiny bit every night. We are in our 6 month of the rash. It

used to itch terribly, but it seems to be doing much better this last few

weeks. Keep your chin up. I know it is hard, we have been there, and have

shed those tears. All you can do is go day by day, and when the good days

come back, I thank God every night when n has had a good day. We do

not take them for granted anymore.

Re: Re: Hi I'm new

>hi. this is my first letter. our daughter kayla now 8 first had signs of

jra

>when she was2. we noticed her knees swollen . 2 weeks ago she had a rash we

>though it to be poison oak, we had just come from grandmas house and she

>lives in the country.we thought since they were playing in the woods that

>that was what had happened,well

>since she has been fine for 4 yrs we never knew this was jra she had been

>fine no problems at all. but the rash, fever,and with in 3 to4 days my

child

>couldn't scratch her nose, move her legs,arms,the pain was so bad she would

>scream out in pain if you touched her.or took her hand. Since this past

>friday she has gone to see her old Rhemmatoid DR. she put her on naproxen 3

>times a day. it seems to help the nights are better she sleep better, i

give

>her a bath 3 times a day before we do her excerises.this seems to help

also,

>i never in my life thought i'd see my child in so much pain i would go some

>where and cry myself. i just hope we can get her back to her old self and

>keep her that way. will that ever happen again?

>

>JOANN STORAY

>

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>

>

[Guest guest]

Our ped. rheumy at one time mentioned that he might put n on 1-2mg of

steroids to increase her weight. She is 11, and got down to 63 pounds. She

has sytemic JRA. She has always been real skinny, but her nine year old

sister now weighs more than she does. She finally had to be put on steroids

to get the disease under control, and her weight is now doing better. We

bought a lot of fattening food for her for quite awhile.

Re: Re: Hi I'm new

>tim

> my daughter is 11. and we are trying very had to keep a positive

outlook.

>She had a rash a few months ago on her chest. Her biggest problem is her

>weight loss. She's drinking 3 ensure pluses a day and has gain 6 of her 28

>pounds back. michele

>

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[Guest guest]

,

I'm so happy to hear that n is doing well right now and that the

arthritis symptoms are coming under control. Seems like the prednisone

helped her out of the most difficult stage. I'm really glad there

haven't been any problems on the tapering schedule. That seems to be the

most effective use of steroids: Short-term use to control the flare,

with a gradual weaning as soon as possible. Send our best to n.

She's been through so much these past few months. I'm so glad that

things are starting to look up

Take care,

Georgina

WILLIAM PRICE wrote:

>

> Dear Joann, My daughter n has systemic JRA, and was like your

> daughter just in November. There were times that n could not move or

> w\alk. It is a full blown flare. n was put on naprosyn and did okay,

> not great, but okay for December and January. She was extremely tired, and

> still had fevers. Then in mid-February she flared again real bad, and this

> time we had to put her on steroids. She had headaches, stomachaches, and

> complained of her abdomen. Which we later found out was an enlarged liver

> and spleen. Within about 2 days she was her old self. We hated to start

> the steroids, but we knew it could save her life with the organ enlargement.

> She was put on 20 mg, she is 11, and we have tapered them for the last

> month. Right now she is on 6mg and doing fine. We go down every five days

> by 1 mg at this point. She was also put on plaquenil at the same time. It

> can take 6-8 weeks to become effective, and if it doesn't work, then we may

> move up to mtx. Right now she is in school full time and has no arthitis.

> She is stiff in the morning a little bit, and she isn't up to full energy

> level yet, but is about 95% there. She has no fevers, but she still gets

> the rash a tiny bit every night. We are in our 6 month of the rash. It

> used to itch terribly, but it seems to be doing much better this last few

> weeks. Keep your chin up. I know it is hard, we have been there, and have

> shed those tears. All you can do is go day by day, and when the good days

> come back, I thank God every night when n has had a good day. We do

> not take them for granted anymore.

[Guest guest]

MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON SHE

HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS AGO

SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7 IN

HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF HER

HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO WORRY

ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14 IN NO

TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR THIRSTY

EITHER.

SWEETPEA200001

[Guest guest]

Hi everyone!

Just to let you all know that is doing so well at the moment. She's

been on celebrex for almost a month now, plus the methotrexate and folic

acid. She's like a different child since she has come off relifan. No more

tummy aches, no more runny tummies and it seems as if celebrex is the drug

for her. It's the little things - like when I call her and she actually

turns her neck to look at me instead of turning her entire little body! I'm

really hoping this good period lasts as she has been more like her old self

this past month. It can be really depressing and very overwhelming when

they are sore and sick and you can't do anything to help them.

Anyway I just wanted to drop in and say hi to everyone - haven't done so for

a while now.

Keep well all of you and keep smiling!

thanks

Ady

> Re: Re: Hi I'm new

>

> MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON

> SHE

> HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS AGO

>

> SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7 IN

> HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF

> HER

> HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO

> WORRY

> ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14 IN

> NO

> TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR

> THIRSTY

> EITHER.

> SWEETPEA200001

>

> _____

>

> <1/2575/1/_/524922/_/954815210/>

>

> <http://adimg./img/2575/1/_/524922/_/954815210/468x60LH_Yel_Gam

> L1.gif>

> _____

>

> For links to websites with JRA info visit:

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

>

[Guest guest]

Hi,

I had asked Josh's rheumatologist about the growth issue, wondering why

out of all the kids I saw during our JRA visits, Josh appeared to be one

of the only ones that was excessively short and not thin. He said that

while growth is disturbed a lot of times by JRA, it doesn't mean that

the kids won't grow tall. Sometimes there's excessive growth of one or

more joints, unequal growth, or just a different body mass distribution.

More tend to be thin, unless of course they're regular steroid users,

like my son. That adds a lot of extra chubbiness. And can increase the

appetite. Before, Josh was always on the slim side. I guess he will be

again, when he gets off the steroids.

Take care,

Georgina

sweetpea200001@... wrote:

>

> MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON SHE

> HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS AGO

> SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7 IN

> HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF HER

> HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO WORRY

> ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14 IN NO

> TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR THIRSTY

> EITHER.

> SWEETPEA200001

[Guest guest]

Hi Ady,

So thoughtful of you, to check in with an update. I remember when you

were so worried and first considering the Celebrex. And now I'm so glad

to hear that it's made a positive difference for your daughter. I'm glad

she tolerates it well, better than the relafen. Different things work

differently for different kids, so it's great that there are several

options available out there. And new ones being researched, too. I'm

happy you found something that's helping make 's quality of life

better than it had been.

Hoping for continued improvements!

~Georgina

Adrienne Ogilvie wrote:

>

> Hi everyone!

>

> Just to let you all know that is doing so well at the moment. She's

> been on celebrex for almost a month now, plus the methotrexate and folic

> acid. She's like a different child since she has come off relifan. No more

> tummy aches, no more runny tummies and it seems as if celebrex is the drug

> for her. It's the little things - like when I call her and she actually

> turns her neck to look at me instead of turning her entire little body! I'm

> really hoping this good period lasts as she has been more like her old self

> this past month. It can be really depressing and very overwhelming when

> they are sore and sick and you can't do anything to help them.

>

> Anyway I just wanted to drop in and say hi to everyone - haven't done so for

> a while now.

>

> Keep well all of you and keep smiling!

>

> thanks

> Ady

[Guest guest]

Hi Georgina,

I am always just sitting back and reading and learning new info from

everyone but your email caught my interest. How long has Josh been on

Steroids? I guess you are talking about oral steroids too, right? My

daughter has just starting taking them orally and boy talk about appetite

increase more like overload. I never knew a five year old could eat so much.

We had a appt. today and her weight is the same but her face is really round

and full. Not to mention flushed. Is that normal? We try to have

carrots,celery,etc. around the house for her instead of junk but that

doesn't always work. I talked to one mother about her injections (Kenzie)

because usually they (doctor) give her steroid injections in her knees and

her right eye and for her knee she is not put to sleep. So last time they

tried they could not do it because she was way to upset and the doctor said

he did not want to take a chance. Now she is on the oral. I don't know what

to think and don't know which way is better for her. The oral seems to be

more dangerous in the long run but putting her to sleep has its cons too.

Your response would be great. Did Josh every have the injections before the

oral? How long has he been on the oral? Kenzie is coming offhersthis week

and hopefully she won't have to go back on them again. She still has some

swelling in her knee but overall seems to be in less pain. Her knee still

gives out on her sometimes when she is walking or riding her bike is that

normal too? Sometimes I don't know how to cope with her pain when she falls.

I try to comfort her but she is just to upset. Hope to talk to you soon

Angel Beers

Re: Re: Hi I'm new

Hi,

I had asked Josh's rheumatologist about the growth issue, wondering why

out of all the kids I saw during our JRA visits, Josh appeared to be one

of the only ones that was excessively short and not thin. He said that

while growth is disturbed a lot of times by JRA, it doesn't mean that

the kids won't grow tall. Sometimes there's excessive growth of one or

more joints, unequal growth, or just a different body mass distribution.

More tend to be thin, unless of course they're regular steroid users,

like my son. That adds a lot of extra chubbiness. And can increase the

appetite. Before, Josh was always on the slim side. I guess he will be

again, when he gets off the steroids.

Take care,

Georgina

sweetpea200001@... wrote:

>

> MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON

SHE

> HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS AGO

> SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7 IN

> HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF

HER

> HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO

WORRY

> ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14 IN

NO

> TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR

THIRSTY

> EITHER.

> SWEETPEA200001

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[Guest guest]

I recieved this e-mail and your story sounds like mine. My daughter was

diagnosed with jra when she was 2, she had the injection in the knee and the

first she had a fit so they put her to sleep and we have had only minor

swollen in the knee. She is on celebrex has been for a long time, she gets 4

different eye drops a day for her itis and she goes for surgery next week

for glacoma in her right eye. She never swolled up when she was on steriods

and her appetite seems to have decreased. What type of jra does your

daughter have and how long if you dont mind me asking?

>From: " Mark Beers " <mabeers@...>

>Reply- egroups

>< egroups>

>Subject: RE: Re: Hi I'm new

>Date: Mon, 10 Apr 2000 13:29:02 -0400

>

>Hi Georgina,

>I am always just sitting back and reading and learning new info from

>everyone but your email caught my interest. How long has Josh been on

>Steroids? I guess you are talking about oral steroids too, right? My

>daughter has just starting taking them orally and boy talk about appetite

>increase more like overload. I never knew a five year old could eat so

>much.

>We had a appt. today and her weight is the same but her face is really

>round

>and full. Not to mention flushed. Is that normal? We try to have

>carrots,celery,etc. around the house for her instead of junk but that

>doesn't always work. I talked to one mother about her injections (Kenzie)

>because usually they (doctor) give her steroid injections in her knees and

>her right eye and for her knee she is not put to sleep. So last time they

>tried they could not do it because she was way to upset and the doctor said

>he did not want to take a chance. Now she is on the oral. I don't know what

>to think and don't know which way is better for her. The oral seems to be

>more dangerous in the long run but putting her to sleep has its cons too.

>Your response would be great. Did Josh every have the injections before the

>oral? How long has he been on the oral? Kenzie is coming offhersthis week

>and hopefully she won't have to go back on them again. She still has some

>swelling in her knee but overall seems to be in less pain. Her knee still

>gives out on her sometimes when she is walking or riding her bike is that

>normal too? Sometimes I don't know how to cope with her pain when she

>falls.

>I try to comfort her but she is just to upset. Hope to talk to you soon

>Angel Beers

>

> Re: Re: Hi I'm new

>

>

>Hi,

>

>I had asked Josh's rheumatologist about the growth issue, wondering why

>out of all the kids I saw during our JRA visits, Josh appeared to be one

>of the only ones that was excessively short and not thin. He said that

>while growth is disturbed a lot of times by JRA, it doesn't mean that

>the kids won't grow tall. Sometimes there's excessive growth of one or

>more joints, unequal growth, or just a different body mass distribution.

>More tend to be thin, unless of course they're regular steroid users,

>like my son. That adds a lot of extra chubbiness. And can increase the

>appetite. Before, Josh was always on the slim side. I guess he will be

>again, when he gets off the steroids.

>

>Take care,

>Georgina

>

>sweetpea200001@... wrote:

> >

> > MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON

>SHE

> > HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS

>AGO

> > SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7

>IN

> > HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF

>HER

> > HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO

>WORRY

> > ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14

>IN

>NO

> > TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR

>THIRSTY

> > EITHER.

> > SWEETPEA200001

>

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

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>1/2121/1/_/524922/_/955328886/

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

>

>For links to websites with JRA info visit:

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

>

>

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[Guest guest]

I think I have talk to you before. My daughter has paur. as of right now but

since Jan. 00' she has had several more joints involved and now the doctor

is calling it exten-pauc. which I have no clue what that means. But just in

the last few days she is now complaining of her wrists hurting and says her

ankles feel like they are cranking all the time. So we feel it is just a

matter of time before her diagnose is changed to poly. It did just start

when she was three in her right eye and after a year showed up in her right

knee. The doctor told us McKenzie just is not following normal JRA patients.

Meaning showing up joints so slowing.

What is the celebrex doing for her? Is it for the eye or the inflammation in

her joints? How come they need to do surgery for glaucoma? Did the eye

doctor see her often? McKenzie visits her eye doctor every 2 to 3 months

right now but when her eye was really bad she seen Kenzie 3 times a week

sometimes. Like I said before she has had three injections in her eye and

that seems to help for about 4 to 6 months. McKenzie is five years old now.

I hope everything goes well with her surgery next week and our prayers are

with you. P.S. If they tell you it is o.k. to go into the room with your

daughter while they put her to sleep, DON'T!! It is the most painful thing

to watch your child go though. I cried so hard, the poor eye doctor came to

check on me:( I will never do that again.

hope to hear from you soon.

Angel Beers

Re: Re: Hi I'm new

>

>

>Hi,

>

>I had asked Josh's rheumatologist about the growth issue, wondering why

>out of all the kids I saw during our JRA visits, Josh appeared to be one

>of the only ones that was excessively short and not thin. He said that

>while growth is disturbed a lot of times by JRA, it doesn't mean that

>the kids won't grow tall. Sometimes there's excessive growth of one or

>more joints, unequal growth, or just a different body mass distribution.

>More tend to be thin, unless of course they're regular steroid users,

>like my son. That adds a lot of extra chubbiness. And can increase the

>appetite. Before, Josh was always on the slim side. I guess he will be

>again, when he gets off the steroids.

>

>Take care,

>Georgina

>

>sweetpea200001@... wrote:

> >

> > MY DAUGHTER WAS ALWAYS SKINNY UNTIL SHE STARTED THE MTX FOR SOME REASON

>SHE

> > HAS PICKED UP 20 POUNDS, BUT SHE STILL DOESN'T EAT MUCH.ABOUT 9 MONTHS

>AGO

> > SHE WEIGHTED 62 LBS AND NOW SHE WEIGHTS 82 LBS. AND SHE'S ALMOST 4 ' 7

>IN

> > HEIGHT. IF YOU SEE HER YOU WOULD THINK SHE WAS AT LEAST 13/14 BECAUSE OF

>HER

> > HEIGHT. AND SHE DOESN'T EAT EVERY DAY EITHER, AND THE DR. SAID NOT TO

>WORRY

> > ABOUT HER NOT EATING. SHE WENT FROM AN 7/8 IN KIDS CLOTHES TO AN 12/14

>IN

>NO

> > TIME FLAT. I TRY TO ENCOURAGE HER TO EAT BUT SHE'S NEVER HUNGRY NOR

>THIRSTY

> > EITHER.

> > SWEETPEA200001

>

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

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>0.0% Intro or 9.9% Fixed APR and no hidden fees.

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>1/2121/1/_/524922/_/955328886/

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

>

>For links to websites with JRA info visit:

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

>

>

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[Guest guest]

my daughter has polyarticular jra and she was dxed august '99, but the

symptoms have been there since she was 3. she was on predisone for her asthma

years ago and she didn't eat on that and actually lost weight. at the age of

5 she weighted 30lbs and her ped at that time said it was ok. well last yr. i

finally switched after 9 yrs. and found out all the time she had jra. i ran

into her old ped. and told her that drese was dxed with jra and she told me

that she knew that's what she had, i was never told. i had to walk away from

her to keep from going off on her. i was so surprised to know that a dr.

would keep that kind of info from someone. when i think back drese was being

treated for jra but i was never told. she always said allergies is what she

was treated her for, because of asthma. but she was on some of these meds.

that i've read about on line.

[Guest guest]

Hi,

Welcome to the group...of course you belong! We only discriminate

against husbands who don't buy their wives reachers, more stools, and

another mirror to hang on the bathroom door maybe? :-)

Karin

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[Guest guest]

Hello to you and Cody,

Welcome to the group!

I can't believe you and your son are both going through this

together! Do you both go to the same doctor? Oh, we have discussed

how c-toma can be hereditary - and it looks like you and Cody are a

perfect example!

Your experience sounds a lot like mine. I had my first surgery in

March and started having problems about four months later and my

second surgery was in August. My second surgery was through the ear

and that was so much better than the first procedure - the recovery

time was cut in half!

My doctor rebuilt my eardrum during the first surgery and it

collapsed because of negative pressure in my ear, causing us to have

to do the second surgery earlier than normal. During the second

surgery, my doctor took cartilage from my ear and used it to stiffen

up the eardrum and he also went ahead and put a tube in the rebuilt

eardrum. This seems to be working great!

Good luck on Monday, please let us know how it goes!

> They found my son't first c-toma at 6 years old. That was in his

> right ear, knock on wood, it's still clear till the present time.

> The following year the removed a small pearl from his left ear. It

> is also doing well. Has anyone heard anything about it being

> hereditary? We got him on the right track, and I went to the ent

for

> my allergies. You see my allergies built fluid up on my ears

pretty

> regularly. Guess what? I had my first c-toma surgery 4-30-01. It

> was large, and pretty close to my brain. I had been so watchful of

> Cody, that I ignored my own problems. The did a radical, took

out

> the bones, replaced my eardrum. They won't replace the bones till

I

> am free of the c-toma for a couple years. I have been having

trouble

> since August. They are doing my second surgery this Monday,12-10-

01.

> I don't like it and dread it like hell. But am thankful it's me

and

> not Cody. He's only 8, and has had six ear surgeries. Only two

have

> been for c-tomas. Two of his were tubes, two were reconstructive

(his

> ear drums were deteirating(spelled?) I'm so happy I found this

> site. It's nice to know that we are not alone.

> Angie

> PS I loved the picture with the mask. Cody's kindergarden teacher

> was a bitch about everything.