April 29, 2012
Six months on Cystadane
Asking for prayer. Ethan has been on Cystadane (betaine) for the last six months. This is the medicine that Dr. Braverman (PBD specialist from McGill University in Canada) is working on getting a clinical trial started with soon. Ethan has been on the medicine for six months and tomorrow Ethan has the blood draw that will "determine" if it is "working." It will take a few weeks to get the test results back but the hope of course is that when they come back that there will be an improvement in his VLCFA and plasmagen levels. We pray that the Cystadane is not just working for Ethan but also for the future possiblilities for all children with PBD. This has been a huge leap of faith for us as Ethan is the only child in the country with PBD taking Cystadane at this time. The medicine is an FDA approved medicine for a different unrelated metabolic disorder, but still, it is a little scary having Ethan be the first.
We'll keep everyone posted! Thank you for your your thoughts and prayers.