Wednesday, March 26, 2008


Charlotte just returned from her eye appointment. A brief background history of our meds & where we were to today is that in January we pulsed Methylpred in charlotte over 3 days at the hospital & it controlled the uveitis. So since January, we have been lowering the oral steroids & the topical steroids (eye drops).


Today's appt confirmed that the uveitis is back & with a vengeance. 2+ in both eyes.
We are back to every hour on drops & our ophthalmologis is calling our pediatric rheumatoligist & we will talk game plan tomorrow.

So... Methylpred in January did it... for awhile, but under ophthamologist standards, it hasn’t been CONTROLLED (guessing because we haven’t been OFF steroids).

So that didn’t work.

The plan, the original plan was to go to remicade if the methylpred didn’t work. And we were going to go to boston to see
Dr. Foster @ the Uveitis Foundation.

So we are going to keep tossing that idea around. We might have an insurance battle to get on the remicade (its a biological drug that is very expensive) & if so, maybe Dr. Foster's assistance can help our pediatric rheumatologist with this crusade.

Its interesting without me knowing it, but now realizing, how I was starting to pick up other projects here & there because I was feeling confident in the direction of life. Time to slow down again & take care of business. Another opportunity to learn & to fight & to continue sharing Charlotte's story so that legislation can be passed & federal funding can help to find a cure for this awful beast.

But first...dinner :)

3 comments:

Heaven's Eye Phtotography said...

Just wanted to let you know that I am reading this...praying for you and thinking about you. Kathy

Laura Stevens said...

This totally caught me by surprise, I guess I was thinking like you that she was past this. I don't even know what to say. This sucks.

Loudest Mom said...

So sorry to hear that! I know you will fight this (and get the Remicade taken care of)! You are a very strong person, and for the record- I think the chubby little cheeks are adorable :)

Hang in there