New member - all about us

[Julie Mott]

My name is Julie. My daughter C (age 6) has pauciarticular JIA and uveitis. She was diagnosed with both at 3 years old, after initially being misdiagnosed with a broken leg (and enduring a leg cast for several weeks). We are fortunate to live in New England, where we have great access to some of the best doctors (Dr. Foster). C has been receiving Remicade infusions since August 2008. She had been on an every 6 week schedule. Last summer we tried spacing it out to every 8 weeks but that resulted in a severe flare up in both eyes. She also received MTX injections weekly up until the end of February, 2010 but we had to discontinue MTX because she was developing high (105 deg) fevers within 3-4 ours of each injection. We tried Remicade alone, staying with the 6 week interval but that has also resulted in a flare up in both eyes. She started Durezol eye drops to treat the flare up in the short term and is now receiving Remicade every 4 weeks and cyclosporine twice a day. We are keeping our fingers crossed that this will be effective in getting her eyes back under control and keeping them there. I am sure many of you feel like we do, one step forward and two steps back. But on the other hand, we are so fortunate to have doctors like Dr. Foster ( I am sure there are others but he is superb!). He is so incredibly dedicated to identifying the best treatments for uveitis, advocating for patients, and being extremely responsive to requests for information, guidance, etc.

[Mike Bartolatz]

Hi Julie!
welcome to the group!
yes you are very fortunate to have the very best Ocular Immunologist in the World taking care of your child with JRA related uveitis. your journey can be VERY difficult however and often setbacks in treatment are common. please stay the course as the type of uveitis your child has can be vision compromisng. are you a member of Dr Foster's online support group for parent's at http://www.uosg.org?
that's the best place to get help for parent's and kids with uveitis. I help out there too as the moderator of the http://www.parsplanitis.org site and the Learing about Ocular Inflammatory Disease forum and those who treat it forum at the UOSG site.

wishing you and your daughter the very best,
Mike Bartolatz