Mal has been on Miralax (between 2 and 4 servings a day) since we went to the doctor back in May. It was hopeful at first, as he was going pretty regularly for about a week. Then it dwindled down and by early last week, we were down to maybe once a week. I tried reducing the Miralax when things got too runny, and it would stop. But we weren't loving the frequent seepage. And his belly is still bloated.
I sent Mal's doctor an email asking what we should do. He said to keep with the Miralax and if he hadn't gone in a week AND was uncomfortable, to try a suppository or enema. He also referred us to a pediatric gastroenterologist.
If you know Mal at all, you know that an enema is just not going to happen unless he's medically sedated, so instead I purchased a pediatric saline laxative (no stimulant). He took three doses Sunday, spaced about an hour apart, because I was giving it time to work. Very late in the day, he did go an impressive amount. But then it was back to nothing substantial, just lots of dribbles and cleaning of underpants.
Last night... last night was as bad as it's been. Mal went through 20 pair of underwear yesterday. He doesn't own that many underpants, so I did laundry. Twice. I also had to clean both toilets, mop the master bathroom floor, and wash several towels (we had him carry around to sit on) and his bedspread. I was exhausted, and I felt so bad for him. He'd want to play with me, but I'd notice that his pants were dirty and we'd have to go clean him up. Over and over. Every 10-15 minutes toward the end of the day.
I don't know what I would have done if we hadn't had the appointment today. We'd initially scheduled it for July 12, but got on a waiting list and had today's slot open up. I was ready to do it, but also had some anxiety. We know Mal's GP. He's a neat guy, very respectful of both of my kids, and really listens and tries to intervene in the least invasive way, with nary a hint of parent-shaming (like the "how did we get here?" kind of thing that makes you feel like, deep down, anything wrong with your kid is ultimately something you've let happen). But this is a new person, and... it's always a crapshoot with new providers.
Mal wasn't excited about getting up early this morning. "I'm having such a good time being asleep!" Same, little dude. We drove about half an hour to Round Rock, and when we arrived at the Baylor Scott and White complex, I realized that I wasn't sure which building was our target and... I'd left my phone at home.
We pulled in at one building and asked the gentleman wh was doing the COVID screening. He said we were in the wrong building, and pointed the right building out to us. We drove a short way and got there in plenty of time. We headed to the 3rd floor (something I remembered from the phone call where we set an appointment) and... it was also the wrong building. The building we were supposed to be in was actually across the street, separate from the hospital complex.
Eventually, we got there, only a few minutes late. One of the benefits of typically being chronically early. We were called right in. The nurse who did the intake was great. When Mal balked at having his blood pressure taken, she just waved it off and said, "Skip it! It's fine."
While we waited, Mal admired a photo of a bunny on the wall, and he wanted me to get a picture of him with it.
Then the doctor came in. He was much younger than he looks in his official photo online. He asked Mal, "Do you know what kind of doctor I am? I am a poop doctor. Hey, someone has to be a poop doctor. There's a pee doctor. There's an ear doctor. And I'm an expert on poop."
He talked about Mal's shirt and asked if he'd been to the beach. When I told him we'd been to the Gulf shore like Galveston and Port Aransas, which some people say isn't actually the beach, he said, "It can't all be Hawaii, right?" Then Mal said, "I did go to a beach once at Disney World!" Disney's Polynesian Resort has a beautiful sand beach. It might not be natural, but it's probably the prettiest beach he's ever visited.
The doctor also mentioned having a son a couple of years older than Mal, who had hair just about as long as his until he was 6 or so. He said his son was often complimented with, "What a beautiful girl" and that he got good at just pronouncing that he was a boy.
This is a lot of chit-chat to be allowed by a busy specialist. It helped Malcolm calm down significantly.
We looked again at the x-ray Mal had taken last month, and one thing this doctor pointed out was that Mal's colon has actually lengthened to compensate for the fullness. Then the doctor wanted Mal to get up on the exam table so he could feel Mal's belly. Malcolm did NOT want to do this, and started to whimper and insist that wasn't happening.
The doctor came and squatted in front of Mal's chair and asked, "Right now, what is it that you're afraid of?"
When Mal couldn't/wouldn't answer, the doctor said, "I just need to feel your belly to see if you've eaten any tigers or monkeys. Have you eaten a monkey?"
Mal said, "I don't eat monkeys!" As Mal laughed, the doctor felt around pretty deeply into Mal's gut. The doctor kept saying silly stuff, Mal giggled, and then at one point, tried to say "stop it; that hurts," but it wasn't completely intelligible. So the doctor said, "A turkey? There's a turkey in there?" Mal corrected him, "No, I don't eat turkeys! Just chickens!" And by then, the exam was over.
So guess what? Mal's still full of poo.
The doctor explained to him that the next thing we do is dependent on him, because no one is in charge of Mal's body but himself. I can ask him to go to the bathroom but I can't MAKE him. So, if this is going to work, Mal has to buy in. He looked at me and said, "Frankly, this can work or not. He's only 5. I have 8 and 9 year olds in here crying, begging me to help them, willing to do ANYTHING to fix the problem." He explained that this is very common, and mores with boys than girls, because boys are just busy and don't want to go. Then they get constipated and it hurts, so that is an encouragement NEVER to do that again, and it leads to what we have now. He told Mal it wasn't his fault, and that it made perfect sense that if he'd decided when he was younger to hold it instead of getting hurt, that was a logical decision for a little kid. But now...
So the doctor told me to get magnesium citrate and have Mal drink a third of the bottle every day for three days. Then he told Mal that, since his rectum was stretched out and the nerves are basically "turned off" and can't tell him when he NEEDS to go (if it always feels like you need to, that becomes your baseline, and your body stops "telling" you), that after each meal, he needs to sit on the toilet for five minutes and push, whether he feels like it or not.
The doctor also recommended maybe some kind of point system, like one star for sitting and two stars if he actually goes. We decided that we'd put a sticker on a calendar every time he does this, sitting and pushing for 5 minutes after each meal, and as long as he has 3 stickers for every day between now and his follow-up next month, that on the way home, I'll stop at Best Buy and get him Super Mario Maker 2, a game he has wanted for months and that I think he'll find very frustrating so have so far avoided purchasing.
Mal was down.
It took a couple of hours to get the liquid cold enough for Mal to drink, so we didn't start it today. We'll start in the morning, and if not earlier than Monday, by then Mal should start emptying out. THEN we go back to Miralax just to keep it soft so he will be encouraged to go. Apparently Miralax draws water into the colon, and it softens new stool but doesn't do anything about the rocks Mal already has built up in there. So we have to blow him out and start over.
Hopefully this works; if not, he'll give me some other things to do next month.
One thing he said we should absolutely do is eliminate dairy. He said it is way too constipating to be worth it, and that Mal definitely does not need cow's milk. This is going to be a chore, because that's like 1/4 of his diet: milk, yogurt, ice cream, string cheese. However, I did go right out and buy SO Delicious ice cream in vanilla and chocolate, and some SO Delicious ice cream sandwiches. Mal has eaten one of those so far and liked it. I am not going to try to give him the oat milk plain, but will try to use it tomorrow when we get our grocery delivery, which has his favorite cereal.
I was noticing as we came home how hopeful I felt. I did last month, though, too. I can't imagine the exhaustion of seeing a light at the end of the tunnel and then disappointment over and over again that parents with children who have chronic health conditions must feel. I do hope that Mal will clear out and we can start over with some better toileting habits. He's never been 100% on this, and it's been a long three years!
I really like his new doctor. 👍
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