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Gamma Interferon/Actimmune We attempted to put Caleb on Actimmune injections when he was a baby (around 10 pounds), but it made his liver enzymes sky rocket (into the 1000's).He was on 0.1cc 3X a week and then .05cc 2x a week and then we had to stop it because of his liver. Now that he's almost 3 (and 26 pounds) and his enzymes are almost back to normal, his docs want to restart it. We are nervous to put him back on it, but are hopeful he'll tolerate it now that he's bigger. I am wondering if anyone has/had a small child on it? What dose did you start out on? I also wanted to let you all know that we welcomed a new baby boy into our family Feb 17th. Isaac was tested at 6 weeks old and was NEGATIVE for CGD!! He truly is a little miracle. We really regret that we didn't save his cord blood. Anyway, if anyone has advice about the gamma interferon, I would appreciate it! Thanks, Trisha
Submitted by Trisha on Sat, 2008-10-11 11:49. categories [ Medication and Treatment ]
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Congratulations on the new baby!! I can't help you out on the Actimmune as I wasn't diagnosed until I was 40. Aren't babies wonderful! I know you are relieved he is CGD free. Let us know what they decide for Caleb. Karen |
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I was in the original study for interferon when I was 4 or 5 at the University of Minnesota. I hated taking it because I would get a fever every time. I had my level reduced so I wouldnt get the fevers. They told me it was suppose to reduce the number of infections when on it. I never saw the decrease. I would be on it and get sick. I would then stop and get sick. I never saw a difference. I stopped using it around 2006 (when I was 23). It is so expensive and I just thought it wasnt worth it if it didnt work.