Waiting for life to change


<cue Jeopardy music>

Waiting for Tuesday when we go to the rheumatologist.  We have all agreed that going back to Kineret isn’t the thing to do, but I have no idea what they will suggest.  I can think of 4 different medicines we haven’t tried, all of which are biologics.  We have discussed Actemra and Rilonacept, both of which are targeted to systemic juvenile arthritis, but the doctors don’t like them for one reason or another.  We have not discussed Humira, Remicade, or any other “non-systemic” medicines.  I’m guessing that is where we will go next, since Enbrel is also not approved specifically for systemic.

I have lots of questions in my mind, most of which will either be answered on Tuesday, or there aren’t simple answers.  Like, how long until the new medicine should be working?  Do I continue to give him injections at home, or will we have to start making trips to an infusion center?  Are the risks with other medicines similar to Kineret and Enbrel? When will Marty start to grow again?  Will he be better before school starts?  I know things are about to change, but I don’t know how.

Those are the questions for the rheumatologist.  The larger life questions are those that may never be answered.  I wish I knew how likely it is for Bella to get it, how to make Marty not hurt anymore, whether he will go into remission, whether his growth will catch up, whether he will have long term complications, and many more.  There are lots of unknowns when your child has a chronic illness.

<dum, da dum da dum. dum. dum bong bong>

The Final Jeopardy question is:  How long until scientists find a cure?  That is the life change I really want.

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About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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