Monday, July 19, 2010

Another adventure

The last couple of weeks prophy has been rough, more than one poke and a grouchy kid when it is all said and done. Last week, after two pokes we were going to stop and one nurse said maybe we should go to the lab and they can do his infusion (they are pretty amazing when it comes to hitting little veins) they said in order for the lab to administer factor they have to do a lab (is that why they call it that?). We decided to test for an inhibitor. It has been a few months since we did his first test (came back negative) and Zander has had more than 30 doses of factor so it is a slim chance, but that was the plan.
Last week came and went, no word on the inhibitor test. I asked Travis if he thought we were going by the rule, no news is good news. Then when we went in for prophy today things seemed off. Harris went back first (as always) and not long after they came out and said they were going to take an inhibitor test on Harris. Some warning lights went off in my head, I didn't think it seemed right that Harris was being tested. Then we went back for our turn, they wanted to do Zander's vitals, I said, "no, we did that last week." The nurse explained we were seeing a Dr. and we needed to do vitals. When we walked into the room I said to Travis, he has an inhibitor. Why else would we be meeting with a doctor.
Our regular nurses came in (looking like someone just hit their dog) and Travis said, "spill it." They hemmed and hawed and said the doctor would be in to talk to us but that yes, Zander's inhibitor test came back positive.
My first instinct was to cry, it was overwhelming, but what good was crying going to do. I took a breath and asked if I could get a pen and some paper so I could take notes. My mind was racing a thousand miles a minute. Questions were swirling around.
When the doctor came in we talked a lot, we learned that his inhibitor is low, 1.9 Bethesda units, (high is more than 5 BU's) That is a good thing. An inhibitor happens in 1/3 of boys with hemophilia. Zander's body is attacking the protein that we are putting into his body with prophy, the body sees those proteins as foreign. The remedy is doing super doses of factor, they have seen kids overcome inhibitors in as little as three months. It would probably mean factor daily, which also brings up the question of accessing his veins. It isn't likely we would be able to hit a vein everyday, they are just too small. We may have to get a port or a pic line. Lots of questions and lots of answers to come.
Today he was retested (to see where his levels are) and we have another appointment to discuss our game plan. I am sure I will be posting often to update you (whoever you are) on this new adventure.


  1. *hugs* i don't have anything witty or particularly helpful. just sending *hugs* and prayers your way!

  2. You and yours are in our prayers . . .