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Old Tue Apr 9, 2013, 06:00 PM
shelby shelby is offline
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Join Date: Apr 2013
Location: Traverse City Mich.
Posts: 7
Hello

I have read many stories on this fourm looking for answers, and trying to wrap my head around the situation my son is facing. In spring of 2012 my 17 yr old son was dx with PNH. This was a shock to my husband and I, because eversince he was 6 yrs old we were told he had a platelet defect that just needed to watched the BMB did not show any cancer. We thought he was doing fine, and for 10 yrs he was, other than some bloody nose and bruising.
Than one day he said he did not feel good and, oh by the way mom my urine is really dark I think I just need to drink more water. Ok, so I did what any mom would do and took him to see his DR. ASAP.
He was anemic, and had black urine, so off to his hemog who said she thinks he might have pnh. He had a second bmb and a flow test to confirm the Dr. PNH theory. During the drive home from the BMB test the Dr. called and said it is PNH and prolly always has been. His flow analysis showed 55% confirmed by the NIH at our second evaluation. Our family was test and he has a HLA matched sister, and was started on soliris in August. He was given the menn vacc but in Nov. got it any way. He pulled through, do to getting him to the hospital as soon as he got a fever. He takes a mulivitamin with iron and foliac acid and now daily penicillian. We are still looking at BMT for him but just not ready.
I feel thankfull that I came across this forum and now just wanted to join and see if I can help anyone like me and my son.
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