Uveitis Hell

[Guest guest]

Pat-

I really don't have any helpful information for you. But my daughter has

uveitis and this sounds like my nightmare! Dr. 's supposed to be THE

guy, so go with him! Please keep us updated. Your son is in my prayers.

Diane (, 7, pauci in remission, iritis)

[Guest guest]

Hi Pat - I am soo sorry to hear of all your struggles!!! If I were you I

would take him to as many specialists as you can. Caroline has been

struggling with her Uveitis. She recently had injections to her eyes and

one eye improved 100% and the other eye had very little improvment. We are

going to see Dr. on the 29th this month for a much needed second

opinion...

Hang in there!

Alia and Caroline, age 4, poly and uveitis

" pgoudvis " <pgoudvis@...>

Sent by:

09/06/2006 09:29 PM

Please respond to

To

cc

Subject

uveitis hell

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

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[Guest guest]

I, too, was so sorry to hear about your dilemma. Please know that we are

all here for you. I hope that the specialists can put their heads

together and figure out the best treatment plan. Take care,

and Rob 17 Spondy

Hi Pat - I am soo sorry to hear of all your struggles!!! If I were you I

would take him to as many specialists as you can. Caroline has been

struggling with her Uveitis. She recently had injections to her eyes and

one eye improved 100% and the other eye had very little improvment. We

are

going to see Dr. on the 29th this month for a much needed second

opinion...

Hang in there!

Alia and Caroline, age 4, poly and uveitis