We got GREAT news today, Zander's inhibitor seems to be under control. His actual inhibitor level was undetectable. The recovery study showed his factor levels starting out at less than one percent (which means even with double doses of factor he is still burning through it fast) but after the thirty minutes his levels went up to 167 percent!! The team was hoping for at least 134 percent, look at us going above and beyond. So, the plan is now to drop down to regular doses (not two times the amount we should be taking) and go to maintenance therapy, which is three times a week (not everyday). We will also get to start talking about port placement, which I look forward to. Looks like we beat this inhibitor!!
Friday, September 3, 2010
That inhibitor can kiss us goodbye
We got GREAT news today, Zander's inhibitor seems to be under control. His actual inhibitor level was undetectable. The recovery study showed his factor levels starting out at less than one percent (which means even with double doses of factor he is still burning through it fast) but after the thirty minutes his levels went up to 167 percent!! The team was hoping for at least 134 percent, look at us going above and beyond. So, the plan is now to drop down to regular doses (not two times the amount we should be taking) and go to maintenance therapy, which is three times a week (not everyday). We will also get to start talking about port placement, which I look forward to. Looks like we beat this inhibitor!!
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That is fantastic news. I lived with FVIII inhibitors until I was 13. They had just installed a port for the immune tolerance therapy when they discovered that my inhibitors had vanished.
ReplyDeleteIt made a huge difference in my life and I really hope that everything works out well for your son!
God bless.....
ReplyDeleteTake care...
Happy a happy and safe life...