It was kind of a long day, but it was sort of my fault-they originally had scheduled the kidney ultrasound and then the appointment with the doctor right after, but I rescheduled (but it was for MEAP!) so the only way it worked out was ultrasound at 11 am, then kidney doctor appointment at 2 pm. The ultrasound took maybe 25 minutes, so then we went to Yesterdog for lunch (definitely the highlight of the day. I love that place!), which took us to like....12:15. We drove around, drove by my dad's old house, back to the hospital, had some ice cream, rode the elevators, Seth got to do a revolving door...then headed up to the appointment early (I forgot my phone AND my watch-the horror!), I think around 1:30 or so. We didn't end up seeing the actual doctor (a nurse, then a resident, but no doctor) till 3:00! I was totally done. Seth did fine though. How my impatient 8 year old had more patience than me...well that says a lot, doesn't it? :)
Anyway, his blood pressure wasn't too bad when they took it there, and she didn't say anything about the ultrasound. We talked for a few minutes-went over his history and whatnot. She asked if he had a "mild" form of Duchenne. Umm. No? Since there is no such thing? I mean, I guess I don't expect a kidney specilaist to be an expert in a neuromuscular disease, and I suppose that speaks to how good he looks, but still. Then she did a brief exam and then said she wanted to do a 24-hour blood pressure monitor, which he didn't want put on then, because then he'd have to wear it to school. So we went back Friday afternoon and they put it on-what a pain! It's a good thing he didn't have to wear it to school. It's a little bigger than a deck of cards, and then he had a cuff on his arm, plus 47 miles of tubing that we had to try to tuck up in his clothes. The thing would take a reading every 20 minutes, every hour at night. I was sort of keeping an eye on the readings, and they were at least in the 90th percentile, but more often higher-99th percentile and even off the chart a lot of times.
Ok, so I'm expecting them to put him on BP meds. It's not like I want him to take another medication, but if it will help protect his heart, I'm all for it. There are some studies that suggest ACE inhibitors are even good for prophylaxis for boys with DMD even before the cardiomyopathy sets in. And I don't think there are any major side effects to worry about. I get a call Thursday from their office saying that they downloaded the data, and it looked fine and they wouldn't treat him. I was driving so I just said, "ok," and hung up, but I was confused. I mean, maybe that's fine for an otherwise healthy kid, but since he's not, and since the heart failure is the way most DMD boys die (since the heart is a muscle-DMD affects smooth muscle in addition to skeletal muscle)...I talked to his pediatrician and she eventually talked to the kidney doctor and now they are going to treat him, so that's good. It just gets tiring feeling like you have to fight for everything.
But! In happier news-five days till Disney!! We are all beyond excited. :)
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