Typical. School has been in session for 9 days and my “Christian” has already missed 5 of those days. Such is life for a child with an inhibitor. My husband has been with him all week at appointments in Denver with an allergist at National Jewish as well as our hematologist in Denver.
Christian’s inhibitor is below 10 and we have been trying to start Immune Tolerance, but he has developed an allergy to Factor 8 (the clotting factor he is missing). Fortunately we have another product (Factor 7a) that helps him when does have a bleed, but it does not work as well as a Factor 8 product would work in resolving a bleed.
We were hoping the allergist could shed some light on this allergy and he has been working with our hematologist. Christian was in the hospital yesterday undergoing a process where he would get a small dose of factor 8 then 10 minutes later a larger dose until we could find out what level he could tolerate (Rapid Dosing).
It did not get very far. At 400 units he started itching. For him to be up to 100% he would need 3200 units in his body. This morning he received a 246 unit dose of Factor 8 and this will be what he takes daily to boost his system to recognize the Factor 8. Slowly but surely we are going to keep hope alive that we will get Factor 8 into his system.
It’s going to be a really long process, and I am trying to be hopeful. It’s just hard to be hopeful all of the time. Sometimes you just need to be disappointed so that you can move on.
I have a 3 year old son with severe hemophilia and he has an inhibitor. The older he gets the more I am beginning to learn some of the difficulties that come with this illness. I really enjoyed reading your blog and felt a sense of hope. I just began blogging myself.
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