Well I haven't had to say we've been at the doctors much lately. But I seem to be spending some time in there lately. Haven has some crazy infection in her toes - back in 2009 we had surgery for this. We had her CMP checked and everything came back normal. Oncology called over to the pediatrician with info on Haven. I did the cliff notes version tonight with him about ROHHAD and Neuroblastoma Cancer. The medicine he is thinking of putting her on is extremely hard on the liver and she would have to be monitored constantly. So I'm not really into that. Haven has done amazing since treatment and doesn't go in to the hospital really anymore.
Her IGG labs came back at 225 this time. So she will be getting her IVIG on Tuesday. She has been moved in to a 12 week schedule now instead of an 8 week schedule. Which is amazing and one step closer to not doing this at all. At least we can hope. I talked with the doctors at her previous hospital and they said the reason she is having so many issues with gaining her immune system is due to the many doses of Rituxan not the Hi CY. We really like the Rituxan when she was doing it. :)
Anyway, we have a few more doctor appointments to figure out this infection. I was very happy that her doctor is going to take a few days to research ROHHAD and the medicine he wants to put her on. We should know more by Tuesday.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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