Introducing myself and my son, Gordon

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stanleysonline
Posts: 1
Joined: Tue Oct 19, 2010 4:53 pm

Introducing myself and my son, Gordon

Post by stanleysonline »

Hi Folks!!!

Brand spanking new :-) It's my son, Gordon, 12 yrs. that has uveitis (iritis). He was diagnosed at 6 yrs. of age. We live in the Baltimore area, so fortunately a lot of our Drs. have had training at the Hopkins Wilhmer Eye Inst. Our current opthamologist works with a pediatric rheumatologist to treat my son. We're going to see him today actually since my son's eyes, esp. the right one is the worst that its ever been. He's on prednison eye drops, 1 every hour to both eyes, 40 mg of prednisone pills, and dialator drops twice a day. Yesterday was a real blow, in iris attached to to the lens (not sure if that's completely accurate - still educating myself). They put some dialator on a cotton ball and placed it over the area for about 5 minutes to try and losen it up - it worked some. So we go today to talk w/ the rheumatologist about some kind of maintenance plan. My son does suffer with occasional joint pain, not currently though. He's very active so that helps some. He also has Hashimoto's hypothyroid and is taking the lowest dose of synthroid. He's positive for the HLA B27 factor, and I believe some others that I do not recall. We went through flare ups from the age of six until 9 yrs. of age, some maintenance program with MTX and salfalcine (sp??), and then we had no issues for two and a half years. And now here we go again, things flared up last spring, settled down after three months, and here it is again (started up again about two weeks ago). So I'm visit the rheumatologist Dr. today, and I'll get back with you all to see what he decides after our visit. Thanks for listening!

Melissa (Gordon's Mom)
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Introducing myself and my son, Gordon

Post by Mike Bartolatz »

Melissa,
Welcome to the group!
I am so sorry that you child has been having problems for over Six years now with recurrent uveitis. I stronly urge you to see Dr QUAN NGUYEN there in Baltimore who is an EXCELLENT ocular Immunologist. his contact information can be found at http://www.uveitis.org in the Patient information section of the Site. I also urge you to join the following online support group which has a parent's forum http://www.uosg.org both sites are affiliated with the Ocular Immunololgy and Uveitis Foundation in Cambridge MA, USA under C Stephen Foster MD the BEST ocular immunologist in the USA and perhaps the World in my lay opinion.
your child needs a corticosteroid sparing approach to treatment once this current flare up is controlled with Corticosteroids. the HLA B27 postitive status guarantees a very long battle with uveitis otherwise. with hashimoto's thyroiditis he may have the IL23R and ERAP1 genes involved as well.
DR Quan Nguyen can get him to remission if at all possible. various forms of arthritis such as ankylosing spondylitis, reactive arthrtis, Psoriasis and psoriatic arthritis, crohn's disease and ulcertive colitis are linked to the HLA B27 gene. the IL23R and ERAP1 genes are also linked to these things along with breast cancer and autoimmune thryroid disease (hashimoto's thyroidititis), perhaps SLE and Behcet's disease if I recall correctly.

I help out at the abover support group as well as this one. please join us in our discussion forums whereever you choose to participate.

wishing you and your child the very best,
Mike Bartolatz
Mike Bartolatz
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