[NLJabbari]

Hi Kim, I am the parent of a 19 y-o son who also relapsed. He was dx'ed in 2004, 1 round of ATG good response and then a relapse. He was put back on Cyclosporine and responded, but once again relapsed (May 2012) when the weening was in process. He was also dx'ed with a PNH clone in 2012.

Recently, His Hematologist sent us to see a BMT Dr. at Stanford, but the BMT Dr. said that he believes there are other "options" to explore before BMT. He highly suggested we make an appointment to see Dr. Neal Young at the NIH. to see what he recommends.
I had called the NIH a couple of weeks ago to request an appointment. They asked me for specific info (a Summary of my sons Medical History) with specific reports etc...so that they could make an "evaluation" prior to deciding if Dr. Young would see him or not. It took me 2 weeks to gather all of the medical records requested etc...lots of calling back and forth with the medical secretary responsible for collecting all of this info. that dates back to 2004.

Earlier today, I decided to follow-up to see if they had received the faxed documents and I was told that the NIH had received all of the documents. They, (Olga Rios) said that Dr. Young had been out of the office all of last week and therefore had barely gotten them early in the day.
I was confused bc He had barely gotten back today and yet, the message was, that he would NOT be able to see my son and that my son should continue Cyclosporine! DUH!!!
I could have told you that myself...!!! No explanation as to "why" was given. Needless to say, I felt like I had been punched in the stomach and the door slammed in my face! I am very disappointed with this whole treatment. I feel that Dr. Young most likely didn't even look at my son's med info. I'd at least like to know WHY!?

Anyway, the BMT doctor believes that since my son's WBC and Platelets are within "Normal" range, but his Hgb is low, but transfusion free. He believes we should be treating for PNH. He also suggested my son do some Chelation (SQUID) Children's Oakland to maximize organ function? We'll be meeting with his hematologist soon to discuss "Other Options"

Please let me know what your specialist recommends for you.

Thanks and take care