Re: Iritis diagnosis in Abby :(

January 10, 2007

Dear Christie,

Hello from a fellow " back-seater " in the discussions!

I remember when my daughter, was first diagnosed (in 2001) with the

uveitis/iritis, and I think I felt the same way as you do now---like you were

feeling down already, and then you get kicked in the stomach. I, too, had read

everything I could find, and at the diagnosis, all I could think of was

everything I had read about the challenge of treating the disease, the

possibility of pressures rising and cataracts, etc., etc., etc. Your feelings

are valid. I remember.

But I can also share with you some things I have learned. Many friends (fellow

uveitis/iritis moms) gave me the assurance that the interim time between

appointments is okay. (They often said that if a child's eyes flared the day

after an appointment, if that child is seen within three months, they can

usually get the flare under relative control.) I know it's scary because you

can't see what's going on with those eyes, and you wish you could buy one of

those slit lamp machines so that you can check every day. My daughter has seen

three different ophthalmologists (first switch was my choice, and it was a good

choice, then the second ophthalmologist moved to a different state (eight hours

away) in the summer of 2005, so he referred me to a colleague in the area. I've

found that all three have different methods of treatment. The second ophth.,

whom I grew to really trust, would usually see every three months, even

when she had " trace cells " which he was treating

with eye drops (FML--Fleurometholone---a mild steroid). The first ophth. would

sometimes schedule an appointment in two week intervals (that was when 's

eyes had a " 1 " inflammation in one eye and a " 2 " in the other---on a scale of

" 1 " to " 4 " , with " 4 " being the worst). The current ophth. (whom I'm also

learning to trust, after a year and a half of being under his care) will

usually go 6-8 weeks between appointments---he was using the more potent Pred

Forte drops for awhile, but they caused her pressures to rise, so he doesn't

prescribe those anymore and instead increases 's Methotrexate dose when she

develops more inflammation. 's eyes have not been totally clear for quite

some time (except for about 2-3 months in 2004/2005), but she usually has just a

trace of cells. I've said often that 's uveitis and JA are " mild but

stubborn " . After getting to know ophth. #2 pretty well over several years, he

would tell me at certain times, " Now this is not

something to get really worried about. " And when he WAS worried, I could tell.

As you get to know your ophthamologist, you'll probably be able to pick up on

these things. (And ask a lot of questions!)

I don't have much advice for the eye cream. started out on drops (she was

about 2.5 years old at the time), so we used Visine in my husband's eyes to show

her what we were going to do. I don't think Visine comes in a cream, and

there's really not any " harmless " cream that you could demonstrate with on

someone else.

I will be praying for peace for you as you work through all of this. Believe

me, I KNOW what it's like! One of the reasons I have reached a certain peace

and calm about this is because we've been on this uveitis/iritis road for almost

six years now, and after awhile, you do get used to the bumps along the way.

's eye sight is excellent. She's never developed cataracts (yet), even when

she was on the steroid drops for an extended period of time (but it was getting

to the point where both the ophthalmologist and rheumatolgist were feeling that

we needed to get her off the steroid drops before she did develop cataracts).

I really need to get back to work, but I really wanted to respond to your

e-mail. My thoughts and prayers are with you. Sometimes a good cry really does

help! We're here with broad shoulders and some tips for the journey ahead. If

we can be of help in any way, please let us know.

Tammy (mom to , age 9, with pauci-articular JA and related uveitis/iritis)

http://www.geocities.com/tlzeigler/sJRA.html

Iritis diagnosis in Abby

Hi all,

I have been trying to keep up with the forum over Christmas, but we

have been so busy! I am glad to have things finally slowing down after

the holiday and the resulting sickness in the house (both girls had a

flu-like bug; yuck!)...

My daughter Abby was diagnosed in July with pauciarticular JRA, and

since then we have been monitoring her for signs of other flares.

Just when things seemed to be going well with her knee and the

Naproxen seemed to be alleviating her stiffness(perhaps signaling the

end of her flare!?) , our routine visit to the pedi opthamologist

ended in a diagnosis of microscopic finding of inflammation of her

iris (Iritis) ... I had this strange sense of forboding on the way to

the appointment even though logic said it would most likely be

negative since her ANA test was negative back in July. I was

comforted by the doctor's course of treatment which begins with

steroid eye cream but terrified at the idea of her having a type of

flare that I couldn't visually or symptomatically monitor at home for

changes. I am also having a really hard time emotionally dealing with

the risks of long-term damage involved with iritis. I am a worse-case-

scenario kind of person and this is terrifying to me! I guess I am

partly looking for words of comfort from other moms who have traveled

this road ahead of me...

I also have a few questions I am hoping someone will be able to help

me with...my first questions have to do with bloodwork. Has anyone had

an experience where their child's blood test results have changed over

time? I was wondering if Abby could perhaps be ANA positive now where

she was negative in July. Not that it is impossible to have iritis

and a negative ANA test...20% of cases fall into this category. I was

just wandering how often pedi rheumy's repeat this kind of bloodwork

if ever. Also, someone mentioned bloodwork to check for liver and

kidney damage with long term NSAID use...is this something my pedi

rheumy should be doing with Abby (she has been on Naproxen twice a day

since August!).

Second, I got the impression that iritis is a tricky bugger from the

postings on this list...do you all think once a month is frequent

enough for monitoring this disease since there are no symptoms or

should her pedi optho be seeing her more often? I am having a hard

time getting the eye ointment into her eye (two year olds can be so

wiggly!) even when my husband and I team up on her! If anyone has any

tricks they learned with their little ones I would love to hear them!

So far it has been terribly traumatic for both parents and the

patient!!! I guess I will have to learn to pray and trust in God's

protection for Abby's eyes during the interim times. This will be

easier once I am able to assimilate the truth of the situation once

again. I have been living in fear of another flare, but this caught

me totally off guard!

Finally, is there any one piece of information that you have learned

about Iritis either in your own child's experience of it or from this

list that you think I need to know? This is uncharted ground for me

and I covet your prayers and your advice! Thanks to all of you for

your open and honest sharing and for your wisdom and

encouragement. ..even though I have been kindof taking a back seat to

most of the discussions I have benefitted enormously from your wisdom

and collective experiences. I don't know how I would be coping with

all of this without a place that normalizes it and gives me strength

to carry on. Love to all of you and a belated Merry Christmas and

Happy New Year!

Love,

Christie (JRA in remission (mostly) since childhood)

mom to Abby (2, pauci JRA and iritis) and Gracie (4)

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January 10, 2007

I don't know much about the Iritis, but do have a great way of holding wigglers

to give eye meds, and inhalation masks. It sounds horrible, but it works.

First I put something on the TV that I know the kids like. I have twins and one

that is 3 years older. I had to do this when they were tiny.

Have the child lay on the floor (on their back) with feet facing the TV, and put

their arms straight out to their sides. You sit with their head between your

thighs, and their arms under your thighs. You can hook your feet over their

legs if you need too. This leaves you with both hands free to open the eye lid,

and apply the ointment. After we were done, we always had a hug. I know this

does sound horrible, but it avoided any accidental pokes in the eye, or injuries

to either myself or child.

I also know that getting the child into this position is sometimes very

difficult, but if you sit on the floor, and then have the child sit in front of

you, you can slide back and lay the child down. Once you get the hang of it, it

is really easy, and I found the kids would just 'assume' the position after a

while.

Kirsty