Hip Problems

April 1, 2002

Bob,

My heart goes out to you. I'm sorry that Tori is still having troubles with her hips. I hope that when she starts using them the orthotics will be helpful in compensating for the leg length discrepancy. Hopefully that will help to alleviate some of the pain she's been feeling. As hard as it is when we're worried about our child, I don't think we should focus too far into the future. We never really know what might happen between now and then.

If you had lived day by day with my son just two or three short years ago, it was a very sad situation in a lot of ways. Sometimes I felt like you do, that "... this disease is robbing her (him) of her (his) childhood." We had come a long way already, had pieced together a pretty good combination of meds but still ... the flares were so strong and so hard on Josh. We still couldn't seem to prevent them. It was very discouraging at times. That kind of life really does take its toll on the children. And on us parents too, of course. In the midst of even those worst periods, we still were able to find things to do that cheered us up and made us smile. Though it may not be the exact sort of childhood you had envisioned for Tori, it sounds a bit like right now you're maybe focusing more on the negative and not so much on the positive. You and your wife seem like such wonderful, caring, and loving parents. And Tori sounds like a terrific child, with lots of strengths and determination. Sometimes it's hard to look on the bright side but ... her experiences right now are teaching her lessons in life that often take many more years for the average person to learn.

Our pediatrician is of the opinion that Josh has started to improve because he's getting closer to reaching puberty. He feels that hormones really do play a large role in childhood arthritis. The endocrinologist has hinted at this as well. Maybe Tori will have a similar pattern? Maybe her arthritis activity will start to decrease as she gets closer to puberty? It's so hard to know. But even if your wife is correct and the arthritis is settling into her hips and Tori needs to wear braces, or use a wheelchair, or have a hip replacement ... that will be okay. You've read the stories from our JRA veterans. Something like that doesn't stop them. They work with it, come up with new solutions for whatever needs to be done. A little bit of encouragement and support goes a long way. Tori knows that you love her, that you're there for her when she needs you, and she'll be okay.

Take care,

Georgina

My daughter is developing hip problems that we are beginning to feel will be with her for a long time. She has Stills since 2yrs and is now 9. I'm afraid that we will soon be hearing the rheumy start talking about hip replacement.We've read that systemic jra, travels through a variety of joints and at some point settles in at one location where it becomes very difficult to manage. Her gait is awkward, one leg is shorter then the other (recently been seen by orthopedic and confirmed my wife's suspicions) We have ordered orthododics. My wife's instincts are telling her that the disease has settled in hips and is going to becausing major damage. She hasn't been wrong yet about the disease's progress. Cortisone injections that should have given her some comfort seem to have been marginally effective.This disease is robbing her of her childhood and I hate to even think how painful her teen years could be. Right now we can carry her when she hurts but when she is 15 is she going to be wheelchair bound or have braces or worse?Any thoughts out there? Anyone in similar situation?Thank you.Bob

April 1, 2002

Dear Bob, Hang in there. This disease is the pits and it can be a real

roller coaster. Our daughter is 13 with systemic JRA, she contracted it at

age 10. It slows her down a bit, but as she ages she is learning her

limitations more and more. She has to go to bed at 8:00 due to the fatigue,

but she is okay with that. If she goes to a sleepover, she is just the

first asleep. When n was first diagnosed in the hospital we ran into

the woman we bought our car from-a volvo dealer(I love Volvos). Anyway, my

husband bumped into her in the hospital elevator and was telling her how

n was so sick and was just diagnosed. Her little girl was five and was

receiving chemo for a very rare cancer. So we thanked our lucky stars that

n had systemic JRA. That little girl died last year at the age of 6,

and I think the mother would love to have a little arthritic girl. I guess

I am saying that it could be alot worse. Do I still feel sorry for myself

at times? You bet. Do I feel like my daughter has been given a bum deal?

You bet. My heart breaks alittle bit every time n can't do something.

Yesterday she couldn't stand for the whole service at Mass, and couldn't

kneel. She just remained sitting. My other daughter, age 11, is a pillar

of health next to n. I don't know if any of this helps, but we parents

all know how you feel. It is okay to cry.

>From: " bskae2000 " <bskae@...>

>Reply-

>

>Subject: Hip problems

>Date: Mon, 01 Apr 2002 18:57:47 -0000

>

>My daughter is developing hip problems that we are beginning to feel

>will be with her for a long time. She has Stills since 2yrs and is

>now 9. I'm afraid that we will soon be hearing the rheumy start

>talking about hip replacement.

>

>We've read that systemic jra, travels through a variety of joints and

>at some point settles in at one location where it becomes very

>difficult to manage. Her gait is awkward, one leg is shorter then the

>other (recently been seen by orthopedic and confirmed my wife's

>suspicions) We have ordered orthododics. My wife's instincts are

>telling her that the disease has settled in hips and is going to

>becausing major damage. She hasn't been wrong yet about the disease's

>progress. Cortisone injections that should have given her some

>comfort seem to have been marginally effective.

>

>This disease is robbing her of her childhood and I hate to even think

>how painful her teen years could be. Right now we can carry her when

>she hurts but when she is 15 is she going to be wheelchair bound or

>have braces or worse?

>

>Any thoughts out there? Anyone in similar situation?

>

>Thank you.

>Bob

>

April 1, 2002

Hello Bob..my heart goes out to you and your family. My daughter who turned

17 in March has polyarticular jra..I only know of systemic jra from this

list. I also have learned that old arthur has many split personalities.

Tabitha was diagnosed in 89' at the age of four and a half in December of

that year. I now look back at the pictures of her on her 4th birthday and

the one of her at 5 and can't believe the difference..had no hint of arthur

on her birthday. As far as Tabithas jra, I can't really see where it has

settled in one particular place.

She had both her hips replaced back in Sept. of 2000...her knees also has

been replaced. So far her hips have been great..last week a scare but turned

out to be not as serious as we thought.

Tabitha hasn't done alot that most kids do when they are teens..it bothers

me because she will be 18 next year and soon the teens will be gone..but one

thing I can say is that Tabitha no matter what holds her head up and keeps

her attitude....We went away for Easter and her and her cousins were talking

about moving in together next year when Tab turns 18..now I am the one who

is panicky..haha! But from reading the post from the veterans on this

list..I know that Tabitha can go on and live a normal life..sure there will

be some things that will be different but I can't even honestly say to

myself that I have a normal life..

There are times..don't get me wrong..I get angry because it hurts me to see

Tab hurt and have this life with arthur. Then I think about my friends who

have trouble with their daughters running around with boys and smoking..and

I can be thankful that I have a beautiful and a very wise daughter who isn't

out partying and doing drugs...I mean lets face it..now a days the world is

a very hard place.

I don't know if I am making since..all I know is that..I know that things

could be worse..but I thank God for giving my beautiful daughter and letting

me raise this wonderful soul and I know that he will give Tabitha courage

and strength to go on in life..when she is an adult.

So hang in there..Your daughter has wonderful parents who love her and that

will be a major plus in her growing up..and as far as her teen years..one

never knows..she will do fine..I promise!!!!!!!!

Good luck

karen

From: " bskae2000 " <bskae@...>

Reply-

Subject: Hip problems

Date: Mon, 01 Apr 2002 18:57:47 -0000

My daughter is developing hip problems that we are beginning to feel

will be with her for a long time. She has Stills since 2yrs and is

now 9. I'm afraid that we will soon be hearing the rheumy start

talking about hip replacement.

We've read that systemic jra, travels through a variety of joints and

at some point settles in at one location where it becomes very

difficult to manage. Her gait is awkward, one leg is shorter then the

other (recently been seen by orthopedic and confirmed my wife's

suspicions) We have ordered orthododics. My wife's instincts are

telling her that the disease has settled in hips and is going to

becausing major damage. She hasn't been wrong yet about the disease's

progress. Cortisone injections that should have given her some

comfort seem to have been marginally effective.

This disease is robbing her of her childhood and I hate to even think

how painful her teen years could be. Right now we can carry her when

she hurts but when she is 15 is she going to be wheelchair bound or

have braces or worse?

Any thoughts out there? Anyone in similar situation?

Thank you.

Bob

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April 1, 2002

Bob,

I wish you all the best with your daughter. I

understand how hard it is sitting by and watching your

child suffer like that. But she will get by just as

you are. With love and support our kids can get

through anything. I truely believe this. Our kids

are an example to us all of pride, and perserverance,

and a little stubborness goes along with it. We wish

you and yours very well and have you in our prayers.

Love to all,

Casaria and Tasie

__________________________________________________

April 15, 2002

Hi Bob, I felt so sad reading your post - my son has systemic JRA and is four

years old. Luckily, his meds have his symptoms well under control. What

medications are being used for your daughter? Rob currently has problems with

his hands and with his knees at times (not always at the same time) - but it is

minimal compared to his pain levels and immobility when first symptomatic. He

was diagnosed a little under a year ago. I wish I had more info to offer - my

thoughts are with your family.

Val

Rob's Mom (4,systemic)

April 15, 2002

,

Sounds like Tabitha has a beautiful & wise Mom! your post was very moving, and

I just wanted to let you know.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 2 Apr 2002 1:08:20 AM Eastern Standard Time, " karens

tribe " <nutsomom5@...> writes:

>Hello Bob..my heart goes out to you and your family. My daughter who turned

>17 in March has polyarticular jra..I only know of systemic jra from this

>list. I also have learned that old arthur has many split personalities.

>Tabitha was diagnosed in 89' at the age of four and a half in December of

>that year. I now look back at the pictures of her on her 4th birthday and

>the one of her at 5 and can't believe the difference..had no hint of arthur

>on her birthday. As far as Tabithas jra, I can't really see where it has

>settled in one particular place.

>She had both her hips replaced back in Sept. of 2000...her knees also has

>been replaced. So far her hips have been great..last week a scare but turned

>out to be not as serious as we thought.

>Tabitha hasn't done alot that most kids do when they are teens..it bothers

>me because she will be 18 next year and soon the teens will be gone..but one

>thing I can say is that Tabitha no matter what holds her head up and keeps

>her attitude....We went away for Easter and her and her cousins were talking

>about moving in together next year when Tab turns 18..now I am the one who

>is panicky..haha! But from reading the post from the veterans on this

>list..I know that Tabitha can go on and live a normal life..sure there will

>be some things that will be different but I can't even honestly say to

>myself that I have a normal life..

>There are times..don't get me wrong..I get angry because it hurts me to see

>Tab hurt and have this life with arthur. Then I think about my friends who

>have trouble with their daughters running around with boys and smoking..and

>I can be thankful that I have a beautiful and a very wise daughter who isn't

>out partying and doing drugs...I mean lets face it..now a days the world is

>a very hard place.

>I don't know if I am making since..all I know is that..I know that things

>could be worse..but I thank God for giving my beautiful daughter and letting

>me raise this wonderful soul and I know that he will give Tabitha courage

>and strength to go on in life..when she is an adult.

>So hang in there..Your daughter has wonderful parents who love her and that

>will be a major plus in her growing up..and as far as her teen years..one

>never knows..she will do fine..I promise!!!!!!!!

>Good luck

>karen