November 10, 2011

A month on the experimental meds....

Ethan has been on the experimental medicine for a month now.... so we started this morning of with a fasting blood draw at DMH. In addition to the liver panel test he also had his blood drawn to check his ACTH and Cortisol levels. The liver panel is to check to make sure that the medicine isn't causing any adverse affects on his liver. As long as his liver panel results have stayed the same (they have been elevated since birth due to PBD) and have not worsened then we will begin slowly increasing the dose of Cystadane (betaine). The ACTH and Cortisol tests are routine tests that Ethan gets every six months to monitor his adrenal function. For children with PBD the risk for them to have adrenal insufficiency is high, especially after the age of 1. So, to be proactive, Ethan has his measured every six months so that if he ever develops this problem we can hopefully catch it quickly and begin treating it with the proper medication.

Otherwise everything else has been pretty "normal" around here. We are continuing all of Ethan's therapies, doctor appointments, etc. We are getting the keys to our "new" Ethan friendly house this evening and are looking forward to getting it all fixed up and getting into our new house.

Please continue to pray for Ethan, our family, and all families affected by PBD.

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