|
Grant's next step in treatment
Julia,
obviously, your son's platelet levels present themselves in a very different manner than Grant's do. It was insensitive of me to say that I would be happy with 30K platelets. After 8 years I think Grant's body has just adjusted to these lower levels. He doesn't have bloody noses until he hits around 4K and even then, he often does not have them if he is religious about using his saline nasal spray. We recently got a 3 pack at Costco. I highly recommend it. The telling evidence for Grant is big dark blood blisters in his mouth and of course lots of bruising when his platelets are really low.
Certainly if my son was having the day to day issues that your son is having I would not be happy either. There is nothing, I repeat NOTHING worse than seeing your child's quality of life suffer with this disgusting disease.
Grant has been on Danazol for about 5 weeks with nothing much to show for it but MAYBE an increased retic count. One time is not a trend, so I will hold my breath until the next draw. His absolute Retic count went from 26 to 48 on this last count.
Starting zenapax is the next thing we are trying and that is in the works now.
A 30 min infusion every 2 weeks. 4-6 treatments.
We'll keep you posted.
Wendy/mom to Grant
|