My “Christian”, who is five, has a high titer inhibitor. When he was first diagnosed, during his circumcision at 11 months of age, the inhibitor registered over 2,200 Bethesda units! It’s now down to 41.
It’s been a long journey, and the journey is not close to over.
I remember attending an NHF rap session for parents of children with inhibitors a few years ago. There was a parent talking about a drug, Rituximab, that is a chemotherapy drug being used to help eradicate inhibitors. I thought she was completely crazy! How could you give that kind of drug to your child without knowing for sure the track record it had?
Boy did I eat my words.
It ended up being an avenue we decided to take. Christian started a protocol of Ritximab and Cytoxan in September of 2009. It’s not been easy, but it has produced some really great results.
But one thing I learned from a new friend of mine (that same mom I heard back at NHF) is that I need to let go of the numbers. If I continue to measure everything based on the inhibitor level, I’ll not only make myself a little crazy, but we will forget to live life and take each day as it comes and let my son be the five year old that he is.
It’s all about living with the inhibitor one day at a time.
The inhibitor may go away in a few months, a few more years or maybe never. We just don’t know. What I do know, is that we have product that helps with his bleeds and a great team of clinicians that help us cross each bridge as we get there.
