hannah

September 27, 2001

hi

how are you doing? the gel cushion was paid for through my insurance for

i am looking for the whirlpool thing as we talk some say it will pay some say

now

have you done a 504 plan for your daughter yet?

if not this would be a great time to get this in place

i did the 504 plan with melissa but her flares were bad and she missed so

much school this year shes on home bound schooling and as of yesterday she

will not be counted absent from school lololol perfect attendance year again

then lololol

the teacher comes out to my house 3 days a week which is good she also gets

one on one help PLUS she can work at her own pace lololol

get informed of all the options you have to go with and your rights for your

child for a good education

you mentioned Tolectin was on that one but had to switch from that

to Voltaren this has helped ALOT shes also on other meds to help also

is 14 years old with poly JRA and connective tissue disease

shes a 9th grader this year

we live in Atlanta Ga

where do yall live?

welcome to the group just ask questions and you will get answers and advice

Robbin

September 27, 2001

Hir

This is just a thought. We have been down all the usual routes.

Methatrexate, prednisolone etc., etc. My son has Stills Disease (Systemic

JRA). We are at present researching and going down the route of long term

antibiotic therapy, as this medication is not toxic like all the other stuff.

Check out www.roadback.org. Also a really good book, by Henry Scammell

'The New Arthritis Breakthrough', which you can order from Amazon, makes

amazing reading and has convinced us to try this route.

Hope this helps.

Sally

September 27, 2001

Hello , my name is aka Rusty Limbs here at the group. I have

been living with jra for 33 years since the age of 13. and I like your

daughter was very competitive. Unfortunately the jra does take over on a

great deal of your life, but she can still stay involved in sports, its

just now she will have to go to a different area, one that does not

involve moves that put undue stress on her joints.

As for chairs, well I don't know of any chairs that really help much,

when the jra is in flare.

Although I do find it helpful to use a vibrating heat pad for my back.

My family usually gives me at least one viberating item at Xmas time. So

I have 2 pillows 1 neck wrap and several hand held vibe raters.

If I were to use them all at once, I think I would feel like I was in the

middle of an earthquake!

As for the methotrexate, well my self I would tell the doctor to find

something else. I allowed the doctors to keep me on gold injections for

to long , they kept telling me, " we need to get the levels up for it do

any good " but the more gold they put in my body, the worst my health got!

No matter how much I complained, they would just repeat the same old line

to me.

Finally I got tired of it and said NO MORE, my weight had went from a

very health 120pds to just under 90pds. I had gotten to the point that I

had no energy, I slept all the time. I could sit down in a chair and be

asleep in less than 2 minutes.

That was my awaking to the fact that, doctors don't know their!

Well any ways I took control of my life right then and there!

Don't make to many friends of doctors, but they do tread lightly around

me.

You have found the right place here at the group, they are a great bunch

of banana's , with great heart and LOTS of UNDERSTANDING!

So feel free to ask ANY question of them and someone will be there for

you, to do their best to answer it.

Oh yeah, I hope you don't mind, but this group is a huggy bunch!

Hugs of Understanding and Compassion!

Rusty Limbs

Michigan

On Thu, 27 Sep 2001 12:46:12 -0000 mwheel99@... writes:

> Hi all,

>

> I'm new here! Glad I found this site! I have a daughter, Hannah,

> who is 10 years old. At the age of 8, she was diagnosed with CVID

> (immune deficiency) and last year she was diagnosed with JRA caused

>

> from the CVID. She has flare-ups as she is having one now. It is

> very discouraging for her - she is a competitive gymnast. Right now

>

> it is affecting her left hip significantly, walking with a limp when

>

> she will walk. The docs want to change her from the tolectin she is

>

> taking to methotrexate. The problem here is methotrexate is an

> immune suppresant and her immune system is already challenged. She

>

> has IV infusions every 2 weeks to build her system up and this med

> would only put us back where we were 2 years ago before she was

> diagnosed. Any advice?

> Also, I am interested in purchasing a whirlpool tub for her. Does

> anyone know if insurance will cover this. She also needs some sort

>

> of gel cushion for school, she can't sit in their chairs because of

>

> the pain. She just spent the last 2 weeks at home because of this

> flare-up. Any suggestions on cushions or special chairs?

> Thanks for any advice and I am glad to find all of you.

>

September 27, 2001

Dear ,

Welcome to the group. I'm afraid I don't have any answers for you (I

wish I did) but I know someone here will come through for you! Again

welcome!

and Kate--(6 1/2 severe polyarticular jra and avascular necrosis

of both hips)

November 27, 2001

& Hannah: also has the immune system problem. Her white blood cells are fighting against nothing! She is on MTX and Arava which both compromise the immune system. I panicked when she had to start school since thats where all the germs come from but so far, she has had two colds, but only colds. Last year, she got really sick and it turned into croup. I think after a while, (hopefully) the system starts to get used to certain germs, (like normal kids) and even with the meds, as time goes on, they build up immunites. At least I am hoping for that. Go for the Methotrexate, I think it is the basis for all the other meds to work.

Pat & (1 year Systemic)

November 27, 2001

Hi, . Sorry I can't offer any advice regarding the meds and size

questions, but I do understand the depression setting in. My son was very

into sports with hopes of playing in high school when his jra set in. It is

still hard for him. He just works as best he can on his physical therapy and

he is trying to find other interests. He did play baseball this past spring

and did alright, but not at the competitive level he had wanted to. But he

did great as far as I am concerned. There are times when he gets sad and

asks why does this happen to me? I comfort as best I can yet I want to know

why too! I wish I could give you some advice about what your daughter is

going through. Hopefully the meds will work. My sons dr has talked about the

methotrexate also, as he is still in pain, too. I have the same reservations

and yet alot of the kids here who have used it seem to do well. It may be

something you need to try. As for size, luckily has only been on

steroids for short periods of time when his asthma flared, and he was

already 13 when the jra hit so his growth is not affected. He is already

taller than me and growing! I am thankful for that. Well, I hope your

daughter can soon leave her chair without pain and know that when you need

to vent or whatever, we're always here. I have always found it comforting to

" talk " to other parents who understand our frustrations about this disease.

Hope this helped a little. Michele

hannah

Hi all,

I know I am just a casual spectator here most of the time but now I

have questions I'm hoping some of you can help me with. Hannah, 11,

was diagnosed with JRA 2 years ago. She was diagnosed with CVID

(immune deficiency) 3 years ago. Here is the problem: her arthritis

has flared up as it has done every 3 months. Right now her pain is

worst in the left hip but MRI shows significant effusion in both

hips. She also has a bone cyst on the left side. Six weeks of

prednisone and asulfadine has not touched the pain. Range of motion

is much better with physical therapy but pain upon weight bearing is

awful. Doc says there should be no pain there by now. One week

after starting prednisone, she got Bacterial Pneumonia. Now she is

starting to cough again and just looks sickly. Doc says it is from

the prednisone depleting her immune system that is already

compromised. She receives IVIG every 2 weeks, 20g. With the pain

still here, doc increased prednisone again til Wednesday, saying pain

should be totally gone by then. If not, we need to meet to consider

methotrexate which I hear is a huge immune suppressant! I am scared

to death to this to her. But the pain in her hip was affecting the

way she walked so badly that doc ordered a wheelchair. So we are on

week three of the wheelchair for a kid that was doing double back

tucks in gymnastics in July! Imagine the depression that is setting

in. Does anyone have similar issues with immune deficiency also or

can anyone offer any advice? Please, any is welcome.

Thank you,

(Hannah, JRA, CVID, Asthma)

For links to websites about arthritis and JRA, visit:

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

November 27, 2001

Hi ,

Does Hannah have Systemic JRA? My daughter had the cough also,

it comes and goes, as does a sore throat. She is 13 with Systemic JRA,

diagnosed in March of this year. She takes prednisone daily and gets

monthly pulses of the methylpred, she gets Enbrel 3 times per week and

Methotrexate once a week, she takes cyclosporine, prilosec, celebrex and

ranitidine which was given to her for headaches although it's more

commonly used for high blood pressure. I'm a bit surprised they are

doing physical therapy in the high point of her pain and hard times.

That must be very hard for Hannah.

sometimes has really low days. I often get concerned about

depression. You know when you are 13 a zit can ruin your week!!

has gained about 40 pounds and has stretch marks a lot of women

never experience. I wouldn't be afraid of the Methotrexate, it takes a

couple weeks to kick in, but you will see a difference.

Like I've been told, as have many others, it's really a matter of

finding the right cocktail for your child. Jess experiences many

different things that have to do with her immune system being messed

with. The doctors have recommended giving her a flu shot (which I don't

believe in getting), but she hasn't been well enough this last couple

months to give it to her. I think for the most part her JRA is getting

under control, what we deal with daily is the side effects from all the

meds. She still has joint pain, and I noticed since the weather has

changed that it's more frequent but like I said our biggest problem is

with the meds.

I hope this helps somewhat. I may have rambled a bit. Please know I am

here for you whenever you need to talk, so are a lot of other caring

people.

Take care, best wishes to you and Hannah.

Dayna Drennan