by cazmac9910 | Aug 31, 2011 | 2Bros, inhibitors, Living Life
Before our trip to Florida, “Christian” was having a few issues and we ended up bumping up his dose of Novo from 2 mgs to 3 mgs. It seems to have really made a difference. Our fantastic Walgreens pharmacist is the one who brought up the dosing change....
by cazmac9910 | Aug 5, 2011 | 2Bros, inhibitors, inhibitors;hospitals
On Tuesday evening, the second IV blew.It took six sticks/pokes to start a new IV. My “Christian” broke out because of nerves. He was so upset. I can’t believe I had left. My husband was there to take over, and I hate to say it, but part of me was...
by cazmac9910 | Jul 19, 2011 | 2Bros, advocacy, inhibitors
We traveled to the Inhibitor Summit last week in San Francisco. It was probably one of the most stressful trips we have ever been on. “Christian” was having a slight soft tissue bleed in his hand as we were leaving town, our treatment center was not being...
by cazmac9910 | Jul 7, 2011 | 2Bros, inhibitors, insurance
We started our journey with Rituximab (an immunosuppresant) in the hopes of eradicating Christian’s inhibitor, back in the fall of 2009.I just received a letter from the insurance company stating that our treatment (Rituximab) in January of 2011 has been...
by cazmac9910 | May 31, 2011 | 2Bros, inhibitors, sports, target joints
My “Christian’s” ankle is not in great shape. It’s a target joint and has continued to give him problems. I am noticing that when he runs he adds a skip into his gait. Without his brace, he turns his ankle to 90 degrees. He’s protecting...
by cazmac9910 | May 24, 2011 | 2Bros, inhibitors
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...
