Yesterday, we had an appointment with the pediatric rheumatologist and discussed a game plan for the future. Reasoning: while the steroid eye drops will probably bring some improvement, the inflammation will most likely return once we stop the eye drops. Since Anna is not a "full-sized person," there's real hesitation and nervousness in prescribing an adult-sized dose of Humira (once a week instead of the current every ten days).
Some key things to seriously consider:
- Is Anna metabolizing Humira quickly? Children often metabolize medications more quickly than adults. To know the answer to this question, we would need to know how to evaluate the levels of Humira in her body. The ped. rheumatologist is going to see if there's a way to measure this with labs. This knowledge would reveal whether it's safe to prescribe a more frequent dose of Humira.
- Information regarding Humira in the last six months has been positive, while serious concerns continue with Remicade, so much so that Anna's rheumatologist is hesitant to prescribe Remicade for any of his patients (I hesitate to share this, because I know several friends whose children are currently being treated with Remicade---but this is what I was hearing.) For Anna, the choice of Humira has been okay so far. (Even though she did get quite a localized rash again after her last shot.)
- There are two relatively new medications/therapies which may be considered for Anna should we need something other than Humira. The one is Orencia (infusion). I can't recall the name of the other at this time (I'm getting older, and my mind can only retain so many details in one day!---next time maybe I'll remember to write it down). I do know that it does not suppress the immune system. But the explanation of how it works made it sound like it would be very expensive.
- Steroid eye drops should not be ruled out. While some would rather not use these in cases like Anna's, because of the increased risk of cataracts and glaucoma (especially at such a young age), these risk factors can be addressed with surgeries if necessary. Many of the new medications have much more serious risk factors (including malignancies---ones not normally seen in children). Anna's eye inflammation is not really bad---it's mainly just stubborn. Is it wise to go for the "really big guns" with such expensive and risky medications (when we don't have a whole lot of information on their track record) when steroid eye drops could keep the inflammation down? This is a very serious question. At least one reknowned eye specialist would rather prescribe the steroid eye drops and "deal with the morbitity that we know rather than deal with the morbitity that we don't know."
But in the end, as I think through all of these things, knowing that we've been praying for wisdom and direction all along the way, taking in as much information as our brains can handle and then going with what we "feel in our bones" to be right and coming to peace with those decisions, I have to rest in the knowledge that we are doing the best we know how. As I say often, my children belong to Jesus before they belong to me. Every day is a gift, and the future is not to be faced with fear. (Typing this helps me to remember this truth.) God is ever present through all of this, and we can trust Him without reservation to keep His promises, including the one that says "All things work together for good to those who love Him and are called according to His purpose." I have seen this promise fulfilled in some of the most devastating tragedies and sorrows in life (even just in this past week).