RE: Caroline's Eye Appointment

[Guest guest]

Alia,

I am so glad that you got a good report at her appointment. I have only been

on this list for less then a year and have read your struggles and it seems

that you have had such a terrible time.

What is it that they look for and see in the eyes? Do you know if there is a

web site with a picture? Today, I had Jaye at the Optometrist to get

her vision checked. My ex husbands uncle is an optometrist and gives us a very

good rate and since we have no vision insurance that is where we go. She

also has an appointment scheduled with an opthamlogist on November 7th to get

checked for the JRA stuff, I have to be sure that all the opthamologist does

is all medical stuff or else the insurance will not pay. It has been a year

since she was checked and at that time all was good. Today, the optometrist

told me that he saw " one " something. He tried to show me by letting me look

through the thing he looks through but I could not see anything. Probably

cause I have no idea what I am looking for.

I called and left a message with the rheumy but have not heard back yet from

them yet. I am sure they will just tell me to wait and see the

opthamologist.

I am just confused in this world of JRA stuff and not knowing hardly

anything.

Veri & Jaye 12 poly

[Guest guest]

Veri -

Thanks for your kind words. I haven't been posting much lately, but I am

trying to keep up with all the emails. It seems that Miss Caroline doesn't get

too many breaks, and so in an effort not to scare anyone away, I have been

waiting to post until we had a bit of good news

When Caroline (or any child) goes to the ophthalmologist for JRA Uveitis it

is IMPERATIVE that they know what they are looking for. Just because they are

in peds, does not mean they are equipped to handle Uveitis. A slit lamp test

needs to be performed in order for the Uveitis to be detected. They are

looking for " floaters " in the eyes. Check out Dr. s site at

_www.uveitis.org_ (http://www.uveitis.org) for more info.

Remember that Uveitis is a silent disease and more often than not there are

virtually no signs. Up until 8 weeks ago Caroline was a 3+ in her eyes and she

felt no pain. That is why we had to go to the drastic measure of doing joint

injections directly into the eye.

I am glad that you are taking Jaye to the doctor soon. I hope that

you get good news!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

Alia,

Awesome news!!! Hope this continues forever!!!!

e, mom to joe 19 poly + lupus

aliaalan@... wrote:

Hey everyone -

Caroline had her eye appointment this week and her eyes are CLEAR!!! Whoo

hoo!!! I feel like this is the first time in THREE years that we have gotten

this answer. I know we are soo lucky and I just wanted to share our good news.

For now, we get to drop her oral prednisone down to 5 mg/daily and reduce

her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg weekly and her

Remicade at 200mg/kg every six weeks. We did also increase her cyclosporine

up to 70mg twice daily but maybe we have finally come up with her perfect

cocktail!!

Thanks again everyone!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

That is the best news I've heard in a while. Way to go Caroline!!! How

relieved you must feel.

Beth

aliaalan@... wrote:

Hey everyone -

Caroline had her eye appointment this week and her eyes are CLEAR!!! Whoo

hoo!!! I feel like this is the first time in THREE years that we have gotten

this answer. I know we are soo lucky and I just wanted to share our good news.

For now, we get to drop her oral prednisone down to 5 mg/daily and reduce

her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg weekly and her

Remicade at 200mg/kg every six weeks. We did also increase her cyclosporine

up to 70mg twice daily but maybe we have finally come up with her perfect

cocktail!!

Thanks again everyone!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

That's great news Alia! I am happy for you and Caroline!

Sophie

> Hey everyone -

>

> Caroline had her eye appointment this week and her eyes are

CLEAR!!! Whoo

> hoo!!! I feel like this is the first time in THREE years that we

have gotten

> this answer. I know we are soo lucky and I just wanted to share our

good news.

>

> For now, we get to drop her oral prednisone down to 5 mg/daily and

reduce

> her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg

weekly and her

> Remicade at 200mg/kg every six weeks. We did also increase her

cyclosporine

> up to 70mg twice daily but maybe we have finally come up with her

perfect

> cocktail!!

>

> Thanks again everyone!

>

> Alia and Caroline, age 4, poly and uveitis

>

>

[Guest guest]

-YEAH!!!!!!! I have tears of joy in my eyes. This is fantastic news.

I know just what it means to you too. It's about time something went

well for Miss Caroline.

Now lets keep those eyes clear!!!!!

hugs Helen and (9,systemic)

p.s I hope you guys are feeling better, I got your text message a

few minutes before the program started. Sorry you couldnt make it.

But get better!!!!!!!!

-- In , aliaalan@... wrote:

>

> Hey everyone -

>

> Caroline had her eye appointment this week and her eyes are

CLEAR!!! Whoo

> hoo!!! I feel like this is the first time in THREE years that we

have gotten

> this answer. I know we are soo lucky and I just wanted to share

our good news.

>

> For now, we get to drop her oral prednisone down to 5 mg/daily and

reduce

> her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg

weekly and her

> Remicade at 200mg/kg every six weeks. We did also increase her

cyclosporine

> up to 70mg twice daily but maybe we have finally come up with her

perfect

> cocktail!!

>

> Thanks again everyone!

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>

[Guest guest]

Alia,

This update has put a smile on my face and a dance in my feet. I am

so very happy for Miss Caroline! :-)

sonia (Aundrea 11 systemic jra/gerd)

>

> Hey everyone -

>

> Caroline had her eye appointment this week and her eyes are

CLEAR!!! Whoo

> hoo!!! I feel like this is the first time in THREE years that we

have gotten

> this answer. I know we are soo lucky and I just wanted to share

our good news.

>

> For now, we get to drop her oral prednisone down to 5 mg/daily and

reduce

> her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg

weekly and her

> Remicade at 200mg/kg every six weeks. We did also increase her

cyclosporine

> up to 70mg twice daily but maybe we have finally come up with her

perfect

> cocktail!!

>

> Thanks again everyone!

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>

[Guest guest]

What wonderful news!! Yeah Miss Caroline! Michele ( 19, spondy)

________________________________

From: [mailto: ] On

Behalf Of aliaalan@...

Sent: Thursday, October 26, 2006 10:33 PM

Subject: Caroline's Eye Appointment

Hey everyone -

Caroline had her eye appointment this week and her eyes are CLEAR!!!

Whoo

hoo!!! I feel like this is the first time in THREE years that we have

gotten

this answer. I know we are soo lucky and I just wanted to share our good

news.

For now, we get to drop her oral prednisone down to 5 mg/daily and

reduce

her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg weekly

and her

Remicade at 200mg/kg every six weeks. We did also increase her

cyclosporine

up to 70mg twice daily but maybe we have finally come up with her

perfect

cocktail!!

Thanks again everyone!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

WOOOOOOOOOOO HOOOOOOOO!!!!! I'm so happy for you and Caroline! Do something to

celebrate! What a long haul you've had.

Great news Alia!

' & a 11 yr. jia/uveitis

aliaalan@... wrote:

Hey everyone -

Caroline had her eye appointment this week and her eyes are CLEAR!!! Whoo

hoo!!! I feel like this is the first time in THREE years that we have gotten

this answer. I know we are soo lucky and I just wanted to share our good news.

For now, we get to drop her oral prednisone down to 5 mg/daily and reduce

her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg weekly and her

Remicade at 200mg/kg every six weeks. We did also increase her cyclosporine

up to 70mg twice daily but maybe we have finally come up with her perfect

cocktail!!

Thanks again everyone!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

Wonderful news, Alia!!!

Liz

_____

From: [mailto: ] On Behalf

Of aliaalan@...

Sent: Thursday, October 26, 2006 11:33 PM

Subject: Caroline's Eye Appointment

Hey everyone -

Caroline had her eye appointment this week and her eyes are CLEAR!!! Whoo

hoo!!! I feel like this is the first time in THREE years that we have gotten

this answer. I know we are soo lucky and I just wanted to share our good

news.

For now, we get to drop her oral prednisone down to 5 mg/daily and reduce

her eye drops to 2 times a day. We are keeping her MTX at 22.5 mg weekly and

her

Remicade at 200mg/kg every six weeks. We did also increase her cyclosporine

up to 70mg twice daily but maybe we have finally come up with her perfect

cocktail!!

Thanks again everyone!

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

Thanks to everyone for their well wishes. They are soo appreciated!

Sorry we have been so absent. I was laid off from my job several weeks ago

and things have been crazy. Caroline and I have been sick, etc. etc. I got a

new (much better) job so things are good now.

I'm looking forward to catching up with everyone again!

Alia and Caroline, age 4, poly and uveitis