As I mentioned in the News section, Dr. Stockler came to visit us at the MDU during Trey’s infusion on Monday. We discussed Trey’s recent series of tests as well as Trey having been on ERT for six monthes (as of August 5…yahoo!!). My biggest questions from Trey’s recent tests were about his heart. The cardiology report (after Trey having had an echo and electrocardiogram) stated that he has trace mitral valve regurgitation (MR) and his left sided valves are slightly dysplastic. Last year I was told that Trey had mild MR, but it was not written in the report. This made wonder. Apparently, the amount of MR that Trey is reported as having, is considered normal (for anyone). As long as it does not get worse, this is nothing to be worried about and because it is so insignificant, one year he can be recorded as having mild MR, another year trace MR and another year no MR. As long as the MR does not get worse, he is doing fine. I also found out that Trey does not have enlarged ventricles, which is great news, and that the slightly dysplastic valves mean that they have a slightly diffferent shape. Again, this can be considered normal, and if it doesn’t get worse, he’s fine.
We also talked about Trey’s abdominal ultrasound report. Dr. Stockler expects that Trey’s liver will continue to shrink. After all, he’d only been on ERT for about 4 1/2 monthes when the ultrasound was done.
Lastly, we talked about Trey reaching the 6 month mark of ERT on August 5. The six month mark is a bit of a milestone because although it is possible for mild reactions to occur after the six month mark, serious reactions have never happened beyond this point. I was curious in finding out about not having Trey’s BP and temperature taken during naps (they wake him up) as well as ways to possibly shorten the day…I was wondering about the pros and cons of increasing the rate, shortening the 1 hour wait time after the infusion is over, being able to call the MDU from home in the morning on the day of his infusion to order the drug if he is healthy…stuff like that. Although they will stop taking Trey’s temp and BP during naps after August 5, they are hesitant to make any other changes. I have emailed Dr. Muenzer to ask him for his thoughts on all of this. When I know more, I will let you know.