Hi Julia,
I know it's very difficult to watch the ones you love struggle with this disease. I'm surprised your son has that much bleeding with that platelet count. So a couple of things come to mind.
First, the next time he gets blood drawn, make sure they run test to check his clotting time. I know it sounds bazzaar but there are clotting factors which play an important role in blood clotting....it takes more than platelets. Even when my husbands platelets were at 8K, his clotting times were normal. So get them to run that test along with a chem panel to check his liver enzymes. The liver plays a key role in clotting factors. Vitamin K is also important for clotting. When John had bleeding, I would make up some gelatin for him to drink. I would get the plain old Knox gelatin powder and mix it up orange juice per the direction and have him drink it. It's soothing to the tummy and has clotting factors to help with bleeding.
Second, I would post on
www.aplasticcentral.com also. There are quite a few parents with children who have AA and many people with good solid experience with cyclo. John never took cyclo but from what I've read, it's a balancing act and blood levels need to be checked all the time. It may be helpful to read some of the past post there. It may give you what you need to push this issue with your doctors.
Finally, how low is Gabriel's HGB? I assume if he get really bad headaches he's still transfusion dependent for red cells? If not, the headaches can be from the cyclo.
Take care,
Marlene