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Dear Madam:

Sadly, your child clearly has the most stubborn example of JIA-associated bilateral uveitis, with nearly all the complications and frustrations associated with that. It's a terrible, terrible hand to be dealt, but you and your doctors have played your cards magnificently, including now the current recommendations by the rheumatologist. I would LOVE to know who your team is; we do not often see a team caring for this sort of thing in the excellent way your doctors have been caring for your child. They clearly have the right idea: stay in the hunt for whatever will put the thing into REMISSION. Steroid-free Remission. Only when you reach that goal (no inflammation on no steroids) will you know that you finally have the beast caged and being tamed. If you can achieve that goal, then there is great hope that eventually your child can be off all drugs without the inflammation coming back. CellCept and chlorambucil are excellent recommendations. Given all the your child has been through, I favor the chlorambucil path, even though that will be the more "frightening" path for you as a parent. But I will tell you that of all the drugs and "recipes" I've tried over the past 33 years for induction of durable remission, chlorambucil is by far the most predictably effective. Used in the hands of someone who has significant experience in using it, dosing it correctly so that the white blood count drops and is maintained between 3000 and 4500 and kept there for at least 9 months, it can be a very highly successful drug in even the most stubborn cases.

I wish you all the best in your quest, and congratulations on being the sort of mother who, no matter how hard it is, no matter how tedious it is, no matter how complicated balancing your life might be, stays in the game, determined to do everything in her power to make it turn out brilliantly for her daughter. It will be difficult for you to believe or even imagine, but not every mother has what it takes to make this committment.

Stephen Foster