The CGD Café

Hi everybody.  I have not posted or read anything for some time.  My son Gord is now 18 years old and doing very well.  We have recently been in contact with  the NIH and they have offered a clinical trial for us to participate in.  Has anyone had much experience with this situation?  Gord is planning on attending University in the fall and we were wondering how disruptive vs. helpful this might be?  Thanks for any input.  Kathy W.  

Gord is 15 years old and has had many bouts of stomach trouble over the years but not for some time.  Almost 2 weeks ago he started having pain high up in the stomach area, to the point where he can't straighten up.  We let it go for a few days but when it persisted we contacted our infectious disease doctor.  He ran the usual ultrasound test and x-ray and of course blood work.  Nothing showed anything conclusive.  He then sent us down to Toronto's Hospital for Sick Children to see a GI doctor, but they don't have any experience with CGD patients and suggested that Gord go o