Monday, August 15, 2016

Is this it?

We traveled to New York last month for James's 20 month follow up with Dr. Li. I really have no new blood work results to report, because, on paper, his testing is perfect. His improvements, even from last July, when he had already made a huge number of gains, are incredible. With that in mind, my first query to Dr. Li was:

"Is this it?"

James's quality of life has improved so significantly since beginning treatment, combined with the difficulty of tapering his Allegra down further, made me think that perhaps we had reached the end point of his treatment - and I was ok with that.

Dr. Li felt he still could go farther.

Her first recommendation was to have him have a food challenge, still on Allegra, and at most half the normal dose for a food challenge, eating that amount regularly. One of the benefits of seeing Dr. Li each day was that I could relay this to James's local allergist and have a response while still in daily contact with Dr. Li. Many times I have wished I could get them both in the same room to hash things out - this was the next best thing.

James's local allergist did not outright say no, but definitely expressed concerns. His first concern was that if James was still taking Allegra, minor symptoms might be suppressed and any reaction might be more serious before noticed. To combat this, the allergist said we would have to admit James to the hospital for the challenge and have an IV put in.

The allergist's second concern was with EoE. I know this is a controversial subject. I am reporting his concerns, not adding commentary because I think the research is still out. He felt that OIT had an increased risk of EoE and not doing a full challenge was too similar to OIT. Challenging when we weren't sure that James's immune system was fully healed could put him at a higher risk.

So, ultimately, the ball was in my court. James's allergist was willing, but ... Dr. Li recommended it.

I asked Dr. Li if it was even possible for James to develop EoE; his blood work shows 0% eosinophils in his blood. She said that yes, he could. Eosinophils can be in tissue and not blood.

I will be honest, EoE terrifies me. James has had digestive problems in the past (and to some extent, continuing) and I don't want to tip the scales. It seems the ultimate jumping out of the frying pan into
the fire.

And so, we decided to wait.

Inadvertently, we seem to have started James's Allegra taper again. Last Tues, the pills got stuck in his throat and he threw them up. This Tues, he forgot to take them. Unless I hear otherwise, I'm going to drop his Tuesday dose since he's gone two weeks without it with seemingly little effects. October will be a year since we began the taper. My goal now is to be done by next October!

No comments:

Post a Comment