As I mentioned a million years ago, Andy's new doctor at UNC recommended him for PT to help with his bathroom issues. The PT called me soon after his appointment and told me they weren't even booking appointments because they were booked so far out, so it would be a long while before he was seen. Greeeeeeat.
Well, they finally called last week and booked his first appointment...and then the next several appointments, every single week for a while. wow. His first appointment was going to be August 16th.
The next day, I got a call, they had an opening for Thursday morning, could we make it? We were heading out of town for the weekend at noon that day, but we were anxious to go, so we jumped all over it. We met with our new physical therapist and she was so so so nice. She asked a bunch of questions to both me and Andy and listened to everything that's been going on. She asked what sorts of things we have tried so far and I took a deep breath and started listing and listing and listing....y'all....we've tried a LOT. She was even shocked/stunned/jaw open at everything we have tried.
So then- here is where it gets good.....
She had Andy stand up and try several different moves: touching his thumb to his forearm, bending down and touching his toes, hyper extending his knees, etc etc.... I assumed she was just checking out the normal stuff.
She asked if anyone had gone over the results of the test with us. I told her we basically were told his muscles were not coordinated down there. She sort of shook her head and explained...
(more than you ever wanted to know ALERT)...
Basically, the anus has an internal and external function. The external is voluntary and controlled by your brain, the internal is NOT voluntary, and just does what it is supposed to do. Andy's external is working totally fine; his internal is not at all. This is a big red flag because it should be working without any effort on his behalf.
THEN, so when Andy had the test run, they inserted a deflated balloon inside his bowel and asked him to tell them when he could feel it as they inflated it. Andy failed that test, big time. When he should have felt it, he didn't. Apparently, he let it go way past the point of detecting it, which denotes that his sensors are all out of whack.
THEN, she told me the series of exercises she had him do at the beginning, scored him an 8/9 in hyper mobility, which is where the tissues in his body are extra stretchy, which could effect his bowel sensors! She said there is an extremely high correlation between kids with hyper mobility and bowel issues.
Okay, so what does this all mean? Basically, this kiddo has some significant factors working against him. Like, big time. She got out her calendar and booked us for every single week through summer and even the start of school. Andy will be working with her once a week to try and fix this problem. Is it ideal to drag a kid to PT once a week during the summer? I mean, no, not really....but, come on.... if she can help him work through this, how huge would that be?!?
I haven't given an update sine starting the new meds. He should be going 5-6 times a week on them. Today, as I type this, it's Sunday. He hasn't gone since Wednesday. They aren't working, sadly. So something has to give!
The PT sent us home with some homework this week:
- more fluid (27 ounces at least every day)
- set toilet time every day (set a timer for ten minutes)
- attempt the squatty potty again (we have tried this before, and it wasn't enjoyed- ha)
SO, there you have it. No real progress, but some exciting news. I left feeling thrilled. We were starting to wonder if he was withholding it, but the PT really did not believe that was the case. I was tearing up listening to her talk about the factors he is up against. Praying we can get this under control soon.
