Monday, August 01, 2005

Stanford

The last test David had at Stanford showed his platelets at 54K (normal is 150-300K). 54K is low, however, it is not dangerously low. Dangerous is under 20K.

Stanford has had 5 boys with WAS. #1 - is David, #2 - passed away from cranial hemorrhage, #3 - is having a BMT at Cincinnati Children's Hospital from an unmatched (5 out of 6) cord blood donor and seems to be doing fine, #4 - had a BMT at Stanford from a matched sibling and is not doing well - his bad cells are regenerating and taking over the good cells, #5 - is waiting for a BMT. One child is 2-1/2 yrs old, the others are under 18 months old.

The nurse said all these children, except for David, had immune problems. They were sickly and often had ear infections. Also, their IgM was low - David's is normal. My children have never had an ear infection - never in 5-1/2 years. This is why we think David has a mild case of WAS. I know there are doctors in other parts of the USA who are much more experienced with WAS and can do more tests on David to help us confirm his particular case. My next mission, after we hear back about the sibling HLA match, is to contact these doctors.

The nurse said they will work with us as a team. If we decide to see someone else there are no hard feelings. That was good news to my ears. She really is a nice nurse.

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