Hunter Syndrome 10 Mar 2012 A Deep Sigh of Relief I wrote this blog in January, after Trey and Ryan returned from Trey's third intrathecal dose of enzyme. I wasn't sure about posting it, but now I am. In the past… mcfadyena
Hunter Syndrome 10 Mar 2012 Fifth Intrathecal Dose at UNC Trey received his 5th intrathecal dose of 30mg of Elaprase Tuesday, March 6 by lumbar puncture. His white count was again less than one, which means no reactions. Yahoo! By… mcfadyena
Hunter Syndrome 13 Feb 2012 As we watch the bridge… Family and friends have asked me 'how it's going' in the trial. Melissa Hogan, who I've now often referred to in my blog, has just put it perfectly, below. It… mcfadyena
Hunter Syndrome 07 Feb 2012 IT dose #4 complete! Well, #4 is complete. Love it. There have been annoying hiccups in the journey, such as being detained by US security at the airport for hours before someone coming in… mcfadyena
Hunter Syndrome 03 Feb 2012 Observations from the trial Most people who know Trey and know about the trial, want to know what changes I've seen in Trey. He's now had three doses of intrathecal Elarpase. He gets his… mcfadyena
Hunter Syndrome 01 Feb 2012 The Low Road The below poem came to mind when a mum got in touch with me, thanking me for joining in her battle to fight for her 3 year old son to… mcfadyena
Hunter Syndrome 26 Jan 2012 Cardiology & opthalmology Good news! GREAT news actually. Trey's C1 or his top vertebrae is ossifying (turning into bone). In people with MPS, the top vertebrae doesn't form completely. It is what leads… mcfadyena
Hunter Syndrome 23 Jan 2012 Trey’s Bilateral Carpal Tunnel Release The procedure was 4 hour and 15 minutes. Trey’s surgeon, Dr. Verchere, booked him for 3 hours, thinking it would be plenty time. There was a lot of scar tissue… mcfadyena
Hunter Syndrome 16 Jan 2012 An unexpected call I got a call today. It was a long distance call and I thought it was a telemarketer. I was about to tell this woman I was busy, when she… mcfadyena
Hunter Syndrome 15 Jan 2012 Expensive drugs for rare diseases : an anthropological analysis of the cultural, political, and economic dimensions of metabolic disease For anyone affected by a rare disease worldwide, and for all of us working towards an Orphan Drug Policy in Canada, the below thesis is an excellent source of information… mcfadyena
