uveitis hell

[Guest guest]

I posted a few times to this list when my son was diagnosed a year ago, but then

could not

keep up with it and went off the list. I had emailed a few of you off the list

but lost all my

data in a computer snafu. But now I really need some help and hope to hear from

anyone

who has experience with this.

Here's the short question:

Has anyone out there experienced having an IOL placed in your child's eye and

then

removed because the eye did not quiet down? How long was it in? If removed, what

happened afterwards? Did your child's eye settle down and can s/he see with a

contact?

Did the vision improve? Did removing the IOL stir up more inflammation and do

more

damage?

Here's the background:

My son is 6 and was diagnosed with JRA a year ago, in Sept 2005. They don't seem

to be

sure if he is pauci or poly but for the moment " just " his ankle and knee and one

eye, all on

left side, have been affected. His ankle and knee are pain free and almost

normal since

he's been on Humira since March (he is also on MTX and Cellcept, the latter for

the eye

mostly, and he responded to Remicade initially but then had an allergic

reaction.)

In early June he had cataract surgery performed by Dr. , here in

Cambridge,

MA, who put in a IOL (inter ocular lens, an artificial lens to replace the

cataract clouded

natural lens he took out). Almost immediately he developed a cloudy membrane

behind

the lens which Dr. has said he needs to have dealt with by laser surgery.

Since he

cannot sit still to do it in 's office, we arranged to have it done at

Children's Hospital

Boston where they can do it in the operating room with a child under general

anesthesia.

(He was initially seen by the Children's Ophthalmology doctors, then I started

taking him

to because he is a well know uveitis expert.)

When Children's went to do the laser last week they discovered his eye was a lot

more

messed up than they thought with a membrane in front of the lens and lots of

iris

problems, etc. that could not be fixed merely by the laser surgery, so they did

not do it.

His case was brought to a patient conference at Children's today, with all 8

ophthalmologists present, several who have examined him previously and are

familiar with

his case. They all seem to concur that the IOL should be removed (and I was told

previously that at Children's they would not have tried to implant it in the

first place). They

are concerned that trying to " clean it up " by doing some laser, some scraping of

membrane, and so on, will simply create more inflammation and damage and then

they'll

have to go in a third time to remove the IOL, which could really destroy his

eye. He is

extremely sensitive to light in that eye, cannot open it and focus normally, can

see very

little (maybe 20/400) and in general has been uncomfortable for 3+months now

with it.

Today they told me outright that he is in danger of losing all vision in that

eye at this point

no matter what they do. The Children's doctor emailed but hasn't heard

back and I

will seek his opinion, though he and the Children's docs seem to vary quite a

lot on several

major issues. Given that, I asked about consulting a third doctor and Dr.

Hunter, head of

ophthalmology at Children's, who also examined him today, suggested a retina

specialist

at Mass Eye and Ear Infirmary, Dr. Mukai, who they would want to be present at

surgery in

case some retina problems were revealed. I intend to call him first thing in the

morning.

I don't know if anyone on this list has any experience that relates to this, but

I would sure

appreciate knowing if you do. The thought of my 6 year old losing his sight in

one eye is

terrifying. Thanks for listening/reading this far.

Pat Goudvis