My 17 yr old son has classic PNH 55% and is on soliris. He had meningococcal sepsis in Nov 2012 even with the vacc. He is also now taking a daily penicillin along with a multivitamin and folic acid. He has no transfusions and is doing very well on the soliris LDH stays around 160.
He has a 100% HLA match sibling,16 yr old sister. We took him to the NIH for a second opinion from DR Neal Young, and they said do the BMT because he is young and healthy enough and has a matched sibling. His reg Hemog said she was shocked at this and said no talk to out transplat team, the transplant Dr. from our regular hospital said they would not want to do it right now because he is doing good on the soliris.
We are going to see one more transplant team at U of M in Ann Arbor MI to see what they say.
I am having a hard time not just going with what Dr Young told as, seeing as we drove 15 hrs to see him. My son is young and I dont want to see him have to go every two weeks for the rest of his life to get his meds, but I dont want to see his life cut short because of a BMT went bad.
Any help would be great, as a mother I can't think of a harder choice to help him make.
Thank You