To

[Guest guest]

Dear ,

Thanks for your post. How long ago was your surgery?

Kind regards,

Kathy

[Guest guest]

One year ago.

> Dear ,

>

> Thanks for your post. How long ago was your surgery?

>

> Kind regards,

>

> Kathy

[Guest guest]

In that one year period of time, have you had cancer marker tests? How is

your overall health?

Kathy

[Guest guest]

Dear :

Does systemic JRA mean more than 5 joints? Ashli " kind " of JRA is still in

question. Sometimes I wonder if her pediatric rheum really believes Ashli

has arthritis. I sometimes feel like she thinks I'm making things sound

worse than they are becuase when Ashli goes in for her 3 month check-up she's

bouncing around the room (usually because motrin does that to her) and her

pain is mainly " to touch " . They have done a bone scan and it is negative.

She has mentioned Sero-negative, but not sure what that all entails. She

keeps asking about stomach problems and checking for rashes, I believe she's

looking for the arthritis that effects organs (can't remember the name right

now).

Didn't know arthritis could go in remission and come back worse! I would say

Ashli right now is a Mild Case, at least while she is on medication. I do

need to find out more about this " dry arthritis " I've heard about. Our

family lives in Cleveland, Ohio. If anyone else lives here, I'd love to

know. Tried finding a person-to-person support group for JRA in the area,

but no luck!

Ashli is doing okay on Motrin. All I can really say is that I can't imagine

her without medication because even with medication she has problems. Over

the weekend we went girl scout camping and Friday night was square dancing.

She was able to do two dances and even wearing her support braces on knees

and ankles, her left ankle swelled and was really painful for about 1/2 hour.

I felt so bad for her and many of the girls stared and I know how much she

wanted to participate. She rarely has any swelling, so the dancing must have

really aggrivated her knee.

Ashli goes for her 3 month check-up next month and I'll ask about Indocin.

Thanks for caring,

Sandi (Ashli's mom)

[Guest guest]

:

Thanks for explaining the systematic JRA. The Sed Rate blood test really

hasn't been done on Ashli since she was diagnosed a year ago. I believe it

was over 50 then...but can't quite remember. Another question to ask next

month.

Last night Ashli could only play 1/2 her softball game. Between running from

1st to 2nd base she hurt her heel or should I say her heel started hurting.

She came off the field limping and it she stayed in pain for a few hours (at

least till she went to sleep). This morning she could walk, but the tendon

above the heel was hurting her to touch. Have you ever heard of the " to

touch " pain?

Thanks,

Sandi A.

[Guest guest]

-- thanks for writing back to me about Kelsey's UTI. When Ashli was

young she had eczema and I never could use bubble bath or scented things on

her. I have problems with my bladder and cannot use bubble bath also. Hope

Kelsey is doing better!

God Bless,

Sandi A.

[Guest guest]

:

I know I just wrote you about Kelsey's UTI, but saw your other email to me

and wanted to write again. We were going to spell Ashli like you spelled

Ashleigh, but since my name ends with just an " i " we opted to be like mom!

Since you are so new to this also, are you confused and overwhelmed a lot? I

find myself feeling that way often. Wondered if anyone else did?

Thanks,

Sandi A.

[Guest guest]

Sandi,

Yes, I often feel overwhelmed and confused since Kelsey has been diagnosed.

I think that even at age 3 she feels the same way. I can tell it gets to her

sometimes when she can't keep up with other kids. Some days at her therapy

she is happy and ready to go, while others (like today) she isn't so

cooperative. It's the same way with her taking medicine; sometimes she takes

it without a problem and other times she fights me and tries to spit it out.

I guess every day will be different. We have learned to take full advantage

of Kelsey's good days!

Take care,

[Guest guest]

imshellrenee@... wrote:

>

> Sandi,

> Yes, I often feel overwhelmed and confused since Kelsey has been diagnosed.

> I think that even at age 3 she feels the same way. I can tell it gets to her

> sometimes when she can't keep up with other kids. Some days at her therapy

> she is happy and ready to go, while others (like today) she isn't so

> cooperative. It's the same way with her taking medicine; sometimes she takes

> it without a problem and other times she fights me and tries to spit it out.

> I guess every day will be different. We have learned to take full advantage

> of Kelsey's good days!

> Take care,

>

Hi ,

Yes. That last sentence rings true for us, too. You never really know

what to expect from day to day, or month to month. When you start taking

things for granted, things all of a sudden can happen to bring you back

to the reality of the situation. JRA can be a chronic, long-term, and

potentially disabling disease that causes our loved ones a lot of pain

and suffering. After what my son has been through over the past

few years, I really do look at things differently now. And I do try to

appreciate and take advantage of all the good days he has. Great advice.

Thanks,

Georgina

[Guest guest]

:

Ashli's water therapy actual starts this week. When she went back in winter

of 1999 they did mostly floor therapy but recommended water therapy. The new

therapy place has done 4 floor therapy (once a week) and are beginning the

water therapy (once a week, weather permitting). You are right about less

stress on her joints and hopefully less pain. That is another reason we do

swim classes every morning in the summer -- to help her loosen up slowly and

without as much " stress " . She just accomplished swimming across the pool all

by herself, without stopping. Her left knee/leg is really weak and this is a

big accomplishment in our home! Thanks for the advice.

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

- I'm new to the list and just read your email about your elbow and am

sorry to hear all the pain you are going through, along with disappointment.

If you don't mind me asking, " How long have you had JRA? " " What type do you

have? " " What types of medication do you or have you taken? "

My daughter, Ashli, is 8 1/2 years old and been diagnosed only 1 year ago.

Medicatons changing a lot along with her symptoms. Thanks for sharing.

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

hi sandy a.,

i don't mind your questions. i was diagnosed when i was 5. i have never

been on any treatment for more than a few days. when i was 7 the docs made

me take 7 adult aspirin every day, i did that til i was 12 and started

having blood in my urine, kidney infections, and kidney stones. i have

never had any luck with rheumy's, i do not trust them personally as a result

of being experimented on and mistreated. i have systemic jra. i have

anemia, kidney problems, and now bowel problems. i have had 5 total joint

replacements since i was 18. i thank you for your concern, i am glad that

others do care. i am discouraged about the elbow. the manipulation will

mean another night in the hospital, more sickness from the anasthesia, and

more aggressive therapy. thank you for your concern and i wish your

daughter the best. if she needs someone to talk to like herself, she can

write me if she likes. i already made one pen-pal with another lady's

daughter from this list.

thanks, brandy

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Dear , thanks for the support! I truly appreciaite it. Tonite is shot

nite...5 pm only 2 hrs. from now....aaaaaaaaaaaahhhhhhhh!

and thanks for the Nioxin tip...I REALLY don't want to deal with a hair

thing..that would do me in!

I'll post and let you guys know what happens...I'm hoping to be VERY asleep

when the sides hit. I told my husband, " If you see me jumping all over the

bed, don't wake me up cause I DON'T want to know what's going on!!! " Glad to

hear you were able to do a vacation together. Our family is planning a

Florida trip and I figured I'd work around shots too..can't do much else

'cept wait and see now. Thanks again,gee

" We can do no great things; only small things with great Love. " Mother

[Guest guest]

--- Mzgee1@... wrote:

Tonite is shot

> nite...5 pm only 2 hrs. from

> now....aaaaaaaaaaaahhhhhhhh!

Good luck gee! Don't forget to drink lots of water,

and have your tylenol ready!

Take care!

=====

Claudine

claudinecrews@...

__________________________________________________

[Guest guest]

:

So happy to here the news about the Shriners. I've never heard of their

organization helping kids with insurance/money problems. Glad to know that

there are still people out there willing to help others, especially children.

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

: great news on your recovery! I see the kidney specialist in 2 weeks

and will ask about the minimal change. I've had so many reoccuring

bladder/kidney/uti's that I've been on Macrobid for over 1 year daily!

Take care and God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

: welcome to the group. I've been on for about 6 months and it has

helped more than anything else! My 8 year old daughter, Ashli, was diagnosed

1 year ago with JRA. It mainly affects both her knees and ankles/heels/feet.

Sometimes her wrists, elbows -- but not that often.

Ashli started on Naproxen -- but after about 3 months she started having

stomach problems and night mares (both are side effects of Naproxen). We

then went to Tolectin (if I'm spelling it right) but that didn't last one

week with stomach problems....so then to 900 mg of Motrin a day. We've been

doing the Motrin for over 6 months now and so far so good. We are now up to

1,200 mg a day plus for the last 4 months we've been taking plaquenil 200 mg

a day.

Bruising is a side effect from anti-inflammatory along with thinning of the

blood. I know if Ashli gets the slightest cut, her blood comes out quick!

So be cautious. I've also heard online here about scarring and the effects

of sunburns with these drugs. Your pharmist should be able to help along

with online medical information.

About things getting worse...well, all I can say is things for us seemed to

get worse before better and then back again. Some days are perfect and then

the next down and out! Some medications take time to build in the system and

not missing dosages helps also. You have come to the right place for answers

and hopes this helps some!

God Bless,

Sandi A. (Ashli's mom) -- Cleveland, OHIO

[Guest guest]

-- glad to hear you are doing so great, so quickly!!! Also glad the

the new rheumy seems to be working out! Many prayers to you...

Sandi A. (Ashli's mom)

[Guest guest]

: I may have emailed with you before, but often times I forget. But

I noticed in a note you wrote, that you have a 8 year old daughter. My

daughter, Ashli, is also 8 and looking for a JRA email pal. Would your

daughter be interested?

Thanks,

Sandi A. (Ashli's Mom)

[Guest guest]

: thanks for info on the Houston conference. Will call today. Do you

plan on going to this one?

Thanks,

Sandi A. (Ashli's mom)

[Guest guest]

:

Your question about when to call the doctor....our doctor says if Ashli's

swelling/pain doesn't go away within 24 hours to call. Usually, like this

morning both knees were #10 pain and slightly swollen...within 2 hours the

pain was gone and swelling about the same. (I mostly worry about pain, the

swelling comes and goes.) So I don't call or email the doctor....unless it

persists longer than a day.

But, every doctor has different ideas/rules/suggestions...so best to call and

ask.

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

-- thanks for the ideas for Ashli's 3rd grade class. I did write a

note to the teacher offering to come in anytime possible and do a

craft/project/whatever with the kids. Don't know how I will work in the JRA,

Ashli still uncomfortable telling kids. Taking things one day at a

time....letting Ashli, teacher and classmates learn to work together and get

in a routine. Teacher really seems to be trying. Doctor finally faxed the

paperwork the school needs and suggested that Ashli be allowed to move once

an hour (to relieve stiffness), more time on stairs, extra set of books, low

stress gym class and ice knees afterwards. This week the physical stress is

still low, only 3/4 days with no recess outside. Ashli always seemed to have

pain during recess. Thanks for all the help,

Sandi A. (Ashli's mom)

[Guest guest]

Sandi A

Peer pressure in thrird grade is hard for kids. They do not want to be

different. Maybe she wil share with her class as she gets oder. I know

niether of my daughters

would share with their class. I hope all goes well for her and that she can

become comfortable with her classmates. I do not know where you are form, but

the Philadelphia chapter of the Arthritis Chapter used to do a puppet show ,

to expalin Arthritis in an assembly matter. I wish you well. CJ

[Guest guest]

Hi emily,

I was just asking about you the other day and suddenly you appear. I am so

sorry that you have to go through this colonoscopy. It certainly seems like

if it isn " t one thing it is another.

Otherwise you seem to be doing really great dealing with the aih. Are you

having a hard time in school with the focusing and such? Are you getting

tired real easy? How many hours are you taking. This new medicine that you

are taking, what kind of sice effects are you having from that ? are you also

still on predisone?

I am so proud and happy that you are doing so well with the AIH. Just wish

that was the end of it for you. I will say a prayer for you. Write back when

you have time. I will send your letter on to Hunt.

Bless You

Rosemary

[Guest guest]

, what symptons were you having that made you think that your AIH was

getting out of control again?

Rosemary