Need eye/autoimmune doctor recommendation | Arthritis Information

Some of you who have been here awhile may remember me talking about my stepson. He had Stevens-Johnson Syndrome when he was only 4, and when he entered his teen years, it reemerged in his eyes, causing inflamed vessels and pain, and threatening his sight (one eye went down to 20/400 for awhile). They believe he may have JRA as well, but the issue in his eyes is so rare, that the doctors he saw all referred him to see a highly trained specialist. For several years he has been seeing Dr. C. Stephen Foster in Boston and trying experimental procedures, treatments and infusions. At this point he has stabilized, in that he's not getting worse, but he is definitely not where he needs to be. Finally Dr. Foster has said he is out of options and he should seek treatment elsewhere.

Dr. Foster came highly recommended and came up in every conversation regarding the field. We're kind of at a loss as to where to go next. I know that we have members here around the country (USA) and the world, and several have ocular autoimmune issues that they have dealt with. I am seeking recommendations for top doctors in this field...any help would be appreciated.

InnerGlow, I can offer no recommendation, but simply wanted to say I send you and your family my very best wishes. Having a child caught in such a horrendous circumstance is incomparable. I don't know anyone, but hope you find the right treatment.Innerglow,

There are some excellent doctors at the Childrens Hospital of Pennsylvania (CHOP) in Philadelphia. Here is their website http://www.chop.edu/consumer/index.jsp Both of my friends had children with cancer and they are a wonderful facility. Good Luck...HG

Also, you might try calling the Jules Stein Eye Institute in Los Angeles. Explain your situation and they can most likely direct you where to go.

Good luck!

[QUOTE=hiking_gal]Innerglow,

[/QUOTE]

I must say that CHOP is ranked highest in many aspects of pediatric care... IDK about eyes though...

Here is US News and World Report's hospital rankings for opthamalogy:

http://www.usnews.com/directories/hospitals/index_html/specialty+repopht

Wills Eye in Phila is third.... but perhaps another is closer?

Jules Stein as harlow mentioned, is listed as 5th....

Best of luck to the young man.

One of the premier eye hospitals in the US is in Philadelphia -- The Wills Eye Institute.Thank you all, for wishes and info. We're in NJ so Pennsylvania is perfect but even LA would be doable (the boy's mother is actually talking to a doctor in Malaysia right now!). I'll check into them. Thanks again!Great...please let us know how he makes out. I forgot about Wills Eye Institute... I heard that is a great facility. HGHmmm, looking on the US News and World Reports rankings, I see Johns Hopkins is #2 in opthamology and #1 in rheumatology and only 2-3 hours away. They even have an ocular immunology department. Anyone have any experience there?HI Innerglow,

I also live fairly close to Johns Hopkins and have many friends that go there. They rave about it. I think it would be worth checking into. Good Luck...HG