Re: Little Update and A Question()

[Guest guest]

, I must say I am on this site but I add here and there. I must give

you some comfort. My daughter diagnosed with Pauci and Severe Iritis. We are

currently are doing well. I have been to to a Pediatric Eye doctor. You must

seek one of this out. I have been to a adult doctor. I have not been so lucky

with them. My Rheumy made the call for Metx. Aubrey eye had not been quiet and

then her knee started to flare. I also know that this is stressful, both eyes

and joints . I agreed with Metx usage we went on Oral. My eye doctor was good

but I mentioned that Remicade does help with Uvietis and she was not aware of

that treatment. I must say you have to comfortable with your Doctor. We had a

good one she Aubrey was one of her toughest cases of Iritis. I also see that

your daughter does ballet. Great my daughter loves it too. Pointe and and Hour

and half of ballet may be rough on her. But if she loves it , I say let her do

it. If you have question and wish to email off board feel free. TerriBer@...

The glasses save my daughter. If she did not have a glasses appt we would have

not found it in time. Be grateful for the glasses. I do want to be real with you

.. Aubrey had a tough case, it took 9 months to put her in remission. Joint in

only 4 months we went on the highest dose a adult/Child could take before going

to Oral( Oral works better) After 9 months she went into remission, that was 5

years ago. My first experience with a adult Opthalmogist they blew me off real

quick. Wanted to see me in a Year. I said, No 6 months.

Terri Berube

Mom to Aubrey 15 pauci and Iritis

From: Michele Lynch

Sent: Tuesday, April 05, 2011 6:26 PM

Subject: Little Update and A Question

So K's knees remain up and down, depending on the day. She takes her

naprosyn as needed - she hasn't taken any in a few days, but more or less

has needed it most days for the last 8 weeks. I can see the fog rolling in

at this moment (its early in the day here for fog!), so I'm guessing her

knees will bother her in this evening's ballet classes (1-1/2 hours

technique followed by an hour of pointe).

More importantly, I suppose, we saw the optho. today. (I'm starting to

really wonder about him now - not sure if that is good or bad.) K's eyes

were both " trace " which is an improvement on the right from 8 weeks ago.

Same same on the left. He wants us to continue for the next 10 weeks with 1

drop in each eye once a day. But I also raised the fact that the pedi rheum

was unhappy with the last visit 8 weeks ago and was discussing mtx. Optho

said it was pedi rheum's call. I think he should have an opinion, but I can

understand he wants to leave the big guns to the rheumy. OTOH, if he is so

experienced with uveitis/JRA, why doesn't he have an opinion?! The good news

is that there continue to be no signs of any cataracts/glaucoma issues

Um, her eyes are more nearsighted than they were (she wears glasses with a

pretty mild rx). It is hard to believe there is no connection.

We see the rheum on Thursday (super fun spring break). Any important

questions I should ask? Anything I should know? I'm pretty confident given

what she has said to us over the last few months, both in unsolicited phone

calls and at our last appt., and given the above, that she will be putting K

on mtx.

I have at least come to peace with the idea that an MDA might knock the

pauci/uveitis into remission, and that is a good thing. I seriously hope we

can go the oral route. I've done a lot of medical things to my kids, but I'm

really not sure I can handle giving an injection.

Michele (mom to K, 12, pauci, uveitis, ANA+)