Trey had an echo, ECG and visit with a cardiologist today, Dr. Human. Although Trey has had a number of heart tests in the past, this is our first visit since Trey’s diagnosis with a cardiologist. Dr. Human sees all the kids with MPS at BC Children’s hospital, so I am really happy to finally have contact with him! Until this point, the results of Trey’s heart tests have been given to me by Trey’s Biochemical Disease doctors, which is fine, but the interpretation of the results are second hand, and all the questions I have about the results have not been quickly or easily answered. Dr. Human was able to look at all of Trey’s echos and ECG’s from the past, as well as the results from today, and give me his thoughts. So here it is: although Trey’s heart has progressed slightly since his tests in January 2008, Dr. Human described Trey’s heart problems as trivial. Trey has trace to mild mitral valve regurgitation and trace aortic valve regurgitation. Dr. Human said we don’t need to come back for a year!
Trey’s infusion rate was also increased today. Instead of maxing out at 40mL/hr, he is maxing out at 48Ml/hr (he starts out at 8mL/hr then after 15 minutes increases to 16mL/hr and after another 15 minutes increases to 24mL/hr, 32Ml for 15 minutes, 40mL/hr for 15 minutes, and now ending and staying at 48mL/hr for the rest if his infusion). I don’t know yet if I’m completely comfortable with this, as I have heard that a faster infusion rate might mean less enzyme is absorbed, but this increase is not huge, so I have a bit of time to look into it and ask more questions.
