new to group

August 14, 2001

Hi! My name is Tonya and my daughter Terah(5) was just

diagnosed with systemic JRA in June 2001. we live in Lake

, Texas which is approx 1 hour south of Houston.

This is Terah's story.

In May she became ill her first symptoms were a sore throat,

very red conjuntive eyes and a rash on the insides of her

arms and legs that almost looked like polka dots. I took

her to a doctor that was filling in for our normal pediatrician

and he diagnosed her with a throat infection and gave her

a prescription of Augmenten and some eye drops. The next evening

she was very ill running a temp of approx 103 and was acting

strange so I immediately took her to the emergency room.

After waiting in the waiting room for almost 3 hours they finally ran

some blood work and diagnosed her with a urinary tract infection. I

knew this could not possibly be right but at 2AM did not feel like

arguing so we went home with a prescription of Bactrum. SInce this

was the Memorial Day weekend there was not much we could do but stay

home and watch her carefully and she seemed to be doing better.

By Tuesday she had taken a turn for the worse, she could barely walk

and was not eating a thing so we took her to her regular doctor who

diagnosed her with a Viral infection and sent us home with yet

another prescription. The next day she could not get out of bed and

her fever was once again 103 so we went back to her doctor and he

admitted her into the hospital. They ran several tests and at this

point did not know what was wrong with her. Her WBC was 35,000 so

they immediately started her on IV antibiotics which over a course of

2 days did not help her. Her doctor came to us and said he thought

she had Kawasaki syndrome and said he was going to transfer us to

UTMB childrens hospital in Galveston. Once there the team of doctors

ran several more test and she was clinically diagnosed with

Kawasakis. She was given IV Gammaglobulin and aspirin but after two

doses they had to finally give her steroids to make her feel better.

After 7 days we went home with a prescription for 40MG of steroids

and 2 childrens aspirins a day. For 4 weeks she seemed to be better

but as we began decreasing her Prednisone and we got down to 20MG in

the morning only she took another turn with fevers as high as 105.2

and we were back at the

hospital. This is when the diagnosis changed to Systemic JRA. She is

now on MTX 7.5MG a week and she is still on Prednisone 20MG in Am and

15MG in PM. She is still very ill and was unable to begin

kindergarten this year. Her biggest problem is her fingers and her

feet and legs she is unable to play or sit on the floor so we read

quite a few books and watch alot of Rugrats. She has a wonderful

immunologist and she will begin seeing a rheumy this week.

The hardest part of this is watching your child go from a healthy

happy child to a sick child who does not even look the same because

of the steroids. I still cry every day and pray that this is all a

big mistake and she will get better. We also have a 7 year old

daughter who does not quite understand all the attention her

sister is getting. At this point we are just hoping to get the

disease under control and get some normalcy back in our lives! Thank

you for letting us join your group I know I will learn alot!

Sincerely,

Tonya

August 14, 2001

Tonya,

Hi I am Suzie, and my daughter age12, has systemic jra, and some

other things. I have to laugh and sypathize with you when I read your

stories about the ER. I have spend numerous nights in the ER and they

always sent Chrissy home with benedryl, saying it was an allergic reaction

to something. Even though I told them a thousand times that I didn't change

laundry soaps or etc, etc, etc, they still were insistant. Even with the

diagnosis, every once in a while we still end up with a perscription for

benedryl, that I of course never fill.

I first off apologize for the laughter, I know right now it doesn't sound

very sympathetic, but in time you too will laugh again. And laughter I

have found is the key to getting both of you through these hard times. I

used to spend so much time making chrissy laugh in the ER the doctors would

get irritated with me, the times I couldn't make her laugh, we would cry

together.

My advice to you is learn all you can. Knowledge is empowering, and with

this feeling of empowerment comes a sense of peace. I often am more

informed than the doctors and tell them what is going on with her. This

group is the best. I belong to others, but have learned the most by far

here. So pull up a chair and ask as many questions as you can, someone

here will answer or guide you into finding the answer.

has been a rollercoaster ride. She has went from a wheelchair

with frequent hospitalization, to playing normally and back and forth

between the two extremes. We have tried numerous medications, and currently

arava and pred mixed with tons of others seem to be doing well for her.

What works for one child doesn't necessarily work for another. Learn to

speak up to the doctors, ask questions , and don't take it for granted that

because they are doctors they know what to do. You know your child better

than any of them, and you need to keep them informed.

We live in california currently, but are planning on moving to Corpus

Christi, TX soon. feel free to call me anytime you need support or a hug,

my home phone number is . I will always be here for you. Also

I just read a great book that I think you might enjoy, It was called You

Will Dream New Dreams, and is sort of a chicken soup for parents of

Children with disabilities. I found it very inspiring, and uplifting,

might be just the sort of thing we need occasionally.

Hugs and prayers to you,

Suzie

new to group

> Hi! My name is Tonya and my daughter Terah(5) was just

> diagnosed with systemic JRA in June 2001. we live in Lake

> , Texas which is approx 1 hour south of Houston.

> This is Terah's story.

> In May she became ill her first symptoms were a sore throat,

> very red conjuntive eyes and a rash on the insides of her

> arms and legs that almost looked like polka dots. I took

> her to a doctor that was filling in for our normal pediatrician

> and he diagnosed her with a throat infection and gave her

> a prescription of Augmenten and some eye drops. The next evening

> she was very ill running a temp of approx 103 and was acting

> strange so I immediately took her to the emergency room.

> After waiting in the waiting room for almost 3 hours they finally ran

> some blood work and diagnosed her with a urinary tract infection. I

> knew this could not possibly be right but at 2AM did not feel like

> arguing so we went home with a prescription of Bactrum. SInce this

> was the Memorial Day weekend there was not much we could do but stay

> home and watch her carefully and she seemed to be doing better.

> By Tuesday she had taken a turn for the worse, she could barely walk

> and was not eating a thing so we took her to her regular doctor who

> diagnosed her with a Viral infection and sent us home with yet

> another prescription. The next day she could not get out of bed and

> her fever was once again 103 so we went back to her doctor and he

> admitted her into the hospital. They ran several tests and at this

> point did not know what was wrong with her. Her WBC was 35,000 so

> they immediately started her on IV antibiotics which over a course of

> 2 days did not help her. Her doctor came to us and said he thought

> she had Kawasaki syndrome and said he was going to transfer us to

> UTMB childrens hospital in Galveston. Once there the team of doctors

> ran several more test and she was clinically diagnosed with

> Kawasakis. She was given IV Gammaglobulin and aspirin but after two

> doses they had to finally give her steroids to make her feel better.

> After 7 days we went home with a prescription for 40MG of steroids

> and 2 childrens aspirins a day. For 4 weeks she seemed to be better

> but as we began decreasing her Prednisone and we got down to 20MG in

> the morning only she took another turn with fevers as high as 105.2

> and we were back at the

> hospital. This is when the diagnosis changed to Systemic JRA. She is

> now on MTX 7.5MG a week and she is still on Prednisone 20MG in Am and

> 15MG in PM. She is still very ill and was unable to begin

> kindergarten this year. Her biggest problem is her fingers and her

> feet and legs she is unable to play or sit on the floor so we read

> quite a few books and watch alot of Rugrats. She has a wonderful

> immunologist and she will begin seeing a rheumy this week.

> The hardest part of this is watching your child go from a healthy

> happy child to a sick child who does not even look the same because

> of the steroids. I still cry every day and pray that this is all a

> big mistake and she will get better. We also have a 7 year old

> daughter who does not quite understand all the attention her

> sister is getting. At this point we are just hoping to get the

> disease under control and get some normalcy back in our lives! Thank

> you for letting us join your group I know I will learn alot!

> Sincerely,

> Tonya

>

August 14, 2001

Tonya,

In rereading your post, I wanted to add a few things. Our doctors here

have highly recommended the doctors in Houston, I can get names if you

would like. Finding the right doctor is also the key to managing your

daughters care. I have a local pediatrician, that works with Chrissy's team

of specialists at the University of San Francisco. My local doctor realizes

that she is way over her head in this disease, and always consults the

specialists when it comes to 's care. I interviewed several

pediatricians to find one that was willing to work and listen to the

specialists. With a local doctor I do not have to travel as often. They

use phones, and fax machines for the exchange of most information. I can

keep chrissy at the local hospital, and they just fax all the orders and

test results back and forth. Technology is a wonderful thing, and it helps

to keep everything managable for us.

also does not look the same, and It is very difficult when I look

at old pictures of her. Of course, she will always be beautiful in my eyes,

but her looks have changed. She has also had major weight fluctuations this

year. Currently she looks good, but has acne, hair loss ( and hair in

places she shouldn't have it) due to medication and steroids, and the moon

face, and is very moody. With the disease, hormones, pre-teens, and

steroids, it can be quite chalenging to figure out why she is having a hard

time that particular day.

There have been a few blessings that do come with having an illness. I try

to focus on these. I know my priorities have changed drastically, and

keeping an immaculate house comes secondary to playing with Chrissy. I

cherish every moment with her, whether ill or well, but definetly enjoy

all the well times more than I ever would have if thats all we had. We have

a stronger bond than most pre-teen girls and their moms, we are so close

and I attribute that in part to this disease. She is an exceptional child,

and finds happiness in the smallest of things. Instead of expensive tennis

shoes or clothing, she wants to plant beautiful flowers and watch them

bloom. She is compasionate of others and has the hugest heart. She is much

more mature in that respect than her peers, but is still the little girl and

enjoys showing it, when most of her peers are at an age where they try to

grow up so fast. We still play barbies and dolls and she admits it. She

kisses and hugs me in public. And we live every day like its the last. You

never know how they will feel tomorrow so make sure you enjoy today.

It is exhausting, living with this disease, and I have spent many a night

crying myself to sleep. It seems like just when I feel like I cannot take

it anymore, I find some new inner strength that I didn't know I had, and am

ready to take it on again. Well now that I have rambled on and on in two

posts, just know that our thoughts and prayers are with you, and we are

here for you.