Re: (13) systemic goes to Shriners Childrens Hospital

[Guest guest]

Hi Everyone, I read all the post but haven't been on in awhile. My son

was diagnosed at age 6 with systemic JRA. we went down a long road with the

fevers, achy joints, and in the beginning he weas very ill. He was put on high

dose steroids for 4-5 years which took away the fevers and puit him in a

medicated remission.. Howver two years ago his hip really started to bother him

and

mri's indicated it was completeley damaged by arthritis( no cartiledge at all

) and eventually he would need a hip replacement. they put him onh enbrel (not

to help his bad hip) that was already damaged ) but to hopefully help his

other hip that showed damage and any other joints that could possible be

affected. well for the past two years he has limped around and has not been able

to

participate in any activities. he can only walk short distances. Last year we

took him to a pedi orthopedic surgeon here In R.I. and he said his hip is shot

but he did not have any experience with this type of problem..so we have been

going to physical therapy all year and he takes tylenol and coedine and

sometimes vicodin. Finally our pedi rheumy said we should take him to Shriners

Childrens Hospital in Springfield Mass where the have the top orthopedic Drs in

the

country who only treat children. I called Friday and they said we could bring

him in Monday (tomorrow) I read the Drs bio on the internet and he specialized

in hip disorders in children.. so I am finally feeling some hope. I am hoping

he will have some answers for us Hopefull. will finally get some relief

some from his arthritis pain.. from what I hear hip replacement is very last

resort on a child still growing because the artificial hip has to be replaced

often as he grows, unlike putting an artificial hip in an adult. any feedback

or thoughts appreciated. anyone have experience with Shriners ? they do not

deal with insurance..all treatment is free..

[Guest guest]

Hi Jane,

We also go to shriners, the one you are going to. We see Holly's rheumie

there too. also sees a doctor there for his toe walking. His name is Dr.

Dvaric, is that who you are seeing??? You will be minutes away from me.

They are very nice there.......if you need anything, just holler!!!

Luv and hugs,

Aj

[Guest guest]

, our 7 year old, goes through Shriners in St. Louis. They pay for

everything. Infact if you need to spend the night they will furnish you will a

hotel room or some other type of place, like a Rhonald Mc house. If you

have to travel they will pay for all your gas and if you need to eat while you

are there they will help with that. Shriners is a great orginazation to be

getting help through.

Alesha

Jitz45@... wrote:

Hi Everyone, I read all the post but haven't been on in awhile. My son

was diagnosed at age 6 with systemic JRA. we went down a long road with the

fevers, achy joints, and in the beginning he weas very ill. He was put on high

dose steroids for 4-5 years which took away the fevers and puit him in a

medicated remission.. Howver two years ago his hip really started to bother him

and

mri's indicated it was completeley damaged by arthritis( no cartiledge at all

) and eventually he would need a hip replacement. they put him onh enbrel (not

to help his bad hip) that was already damaged ) but to hopefully help his

other hip that showed damage and any other joints that could possible be

affected. well for the past two years he has limped around and has not been able

to

participate in any activities. he can only walk short distances. Last year we

took him to a pedi orthopedic surgeon here In R.I. and he said his hip is shot

but he did not have any experience with this type of problem..so we have been

going to physical therapy all year and he takes tylenol and coedine and

sometimes vicodin. Finally our pedi rheumy said we should take him to Shriners

Childrens Hospital in Springfield Mass where the have the top orthopedic Drs in

the

country who only treat children. I called Friday and they said we could bring

him in Monday (tomorrow) I read the Drs bio on the internet and he specialized

in hip disorders in children.. so I am finally feeling some hope. I am hoping

he will have some answers for us Hopefull. will finally get some relief

some from his arthritis pain.. from what I hear hip replacement is very last

resort on a child still growing because the artificial hip has to be replaced

often as he grows, unlike putting an artificial hip in an adult. any feedback

or thoughts appreciated. anyone have experience with Shriners ? they do not

deal with insurance..all treatment is free..

[Guest guest]

Hello,

It is a last resort to do joint replacement in a child. I have been

down that road some time ago. Rest a sure if it has to be done things

are so much better now. I was 13 when I had my right hip replaced and

it is still going strong, I am 30 now. Never really had any trouble

with it even while I was still growing. I have a limp but I had that

before they replaced my right hip. It was 17 years ago this july that

it was replaced and it was such a great relief for me when I was

younger. I do believe I have talked to you about this before. My

memory don't work so well anymore. Oh yeah this is the Same as

acnelson24, Just needed a new name. My right hip has out lasted both

of my knee's, They have both been redone once. Those were replaced

when I was 16. If you have an question if it comes down to ryne

needing the replacement, feel free to email me anytime. Until next

time take care.

from what I hear hip replacement is very last

> resort on a child still growing because the artificial hip has to be

replaced

> often as he grows, unlike putting an artificial hip in an adult. any

feedback

> or thoughts appreciated. anyone have experience with Shriners ? they

do not

> deal with insurance..all treatment is free..

>

>

>