People are asking for clarity— exactly WHAT does Wilma have now?
Apparently it’s a BADDDDDD case of non-retentive encopresis/ megacolon and THAT’S the main issue, NOT her hypotonia. All MUSCLES are working correctly, but she had SUCH severe constipation we didn’t know about (she was pooping daily) that her colon expanded to the extent that nerve endings lost sensation and she was NEVER able to learn to poop on the toilet. Now, instead of pooping once a day, she poops SMALL poops a million times a day, NEVER in a toilet— the ONLY way to solve the problem is to keep her pooping a lot with lots of intervention— the nerve endings are such that her body CAN’T form one poop a day. The doctor has hope that one day the nerve endings will regain sensation IF we can unconstipate her. Every time we do an xray and calm down on the medications she constipates again. So now we’re going to start daily enemas for a while plus probiotics plus metamucil plus a special medication I’ve never heard of. Meanwhile we’re positive she’ll be pooping a zillion times a day for many more months. I was SOOOOO hoping it was something else.
Picture teaching 1st grade public school and having a student poop herself a bunch of times every day— since it’s bound to get a lot worse before it gets better, that’s where we’re headed. Typical cleanout methods have made her miss school (diahhrea)— so we’re hoping enema protocol will be better.
Today’s GI appt…… we’re doing another cleanout, but NOT with milk of magnesia or miralax— HOOOOORAY!!!!!!!!!!!!!!!!!!!!!!! No more 15-17 diahhreas per day for 4 days in a row! I *CRIED* when he suggested another cleanout and we compromised with enemas— we’ll do enemas every day for 7 days and at least once a week after that. We’re doing a spinal MRI to rule out tethered cord— of course he feels it’s JUST a constipation problem that will “take a while” for her to get sensation back, but I need to cover all ground. He wrote prescriptions for a probiotic, metamucil, a special pill to take the place of miralax (hopefully it won’t do what miralax did), enemas, and pullups (we haven’t had free pullups in a while—– medical supply companies have been providing through insurance either child extra large or adult extra small of off brands— Wilma is RIGHT in between and needs a size that works so I gave up on insurance and bought pullups— but everytime this doc does a cleanout I curse him as I spend a ridiculous amount on pullups— so we’re going to try to get the BRAND I WANT and the SIZE I WANT through insurance. Of these 5 new scrips, the pharmacy MIGHT have 1 of them by Tuesday— a few others were already rejected but the pharmacist is calling the doc’s office today. The constipation end of the encopresis journey is a whole chapter in my upcoming novel. BLEAHHHH! Our behavior specialist from the county board came with us— she’s going to help me get a behavior plan in place to get Wilma used to sitting on the toilet to try to poop each day— Wilma has NO trouble sitting after an enema, but to sit when we don’t know whether poop is coming causes a massive meltdown. With the new pill and with the enemas, we COULD be looking at 10+ poops a day again—- but the long term plan is to make it get a lot worse before it gets better. If we DON’T go through the process of getting LOTS AND LOTS of poops coming, she’ll NEVER regain sensation.
Every night I put the kids to bed. Every night I go back into both rooms to change diapers. Every #$%#$% night. They’re 6 and a half years old. Our entire upstairs smells like a zoo.
Fred, I’m not as worried—– He’s well over 90% toilet trained during the day and if I simply forced him to TRY to poop each night before bed rather than just ask him if he has to, he’ll stop waiting until his night-time pullup to do his business. So from now on, watch out Fred, mommy is going to make you TRY each night before bed. Won’t that be fun?
Wilma’s next GI appointment is tomorrow. She’s 6 and a half and the only 3 times in her life that her poop ever went into the toilet is after her 3 enemas (pre xray and pre procedure). She’s had xrays and a manometry so far and though the MUSCLES are working, it’s clear that something else isn’t (nerve endings? communication from that part of the body to the brain?). Her typical poop schedule is 3-4 small poops per day rather than one large one. The GI doc has been saying it’s constipation and we just need to get her pooping more often so that her muscles can retrain to feel the urge. Everytime he has her do a cleanout, she poops 15-17 times per day for 4 days in a row (meaning she misses school and I get kicked in the face a lot— she hates being changed). We’re all much happier when she poops ONLY 3-5 times per day. Clearly, he’s wrong. She might be constipated, but so what— there’s something else happening here with the nerve endings or brain communication. When she fell and needed stitches she didn’t feel the pain. She doesn’t feel pain or hot/cold like other kids. My plan for tomorrow is to ask about a spinal MRI. If he tells us just to do another cleanout, he’s done and he’ll be lucky if I don’t beat him up. She IS hypotonic and is late on all gross milestones, but I haven’t met another mom of a hypotonic kid yet who can’t toilet train by this age unless there is something more severe.
We don’t think it’s Hirschsprung’s. Now the possibilities include a mild form of cerebral palsy, a mild form of spina bifida, CIPA or another HSAN, Celiac, and a bunch of other things my helpful facebook friends have told me to pursue. When these kids were diagnosed with autism, I had no idea that nailing down a PHYSICAL problem would be even more complicated than the constant med changes/ IEPs of autism!
we haven’t had a double meltdown that’s lasted this long in quite some time. Hubby got bitten and a shoe thrown at his head. I got hardcover books thrown at me and hit repeatedly. Chairs got thrown. Usually all of this happens within 10 minutes and after the 10 minutes things are calm again. Last night it was an hour. A VERY long hour. After the kids went to bed, I looked around at the mess all over the place, my increasingly un-do-able to-do list, and decided to turn off all lights, curl into a ball, and turn on the tv. I feel better today.
Yet again, another of my autism mom friends writes exactly what I’m thinking and what I’d love to find the time to write.
Rest in peace, Drew Howell. Owen Black. Mikaela Lynch.