Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Hirschsprung’s or EE- GI fun’ Category

Can I just hire someone to finish toilet training?

The twins are almost seven. I want to be done with toilet training sometime in this century.

Fred does 100% great AS LONG AS I *tell* him to go pee every hour and a half to two hours. If I keep my mouth shut he happily wets himself and doesn’t even say a word until I notice or until the next time I tell him to go pee. If I ask him why…. guess what his extremely brilliant response is? “I don’t know”. For poop, he poops about once a day in the toilet after the dance. I notice the dance, I TELL him to go poop. At school THEY notice the dance and THEY tell him to go poop. If a day goes by with no dance and no poop, I sit him on the toilet 2-3 times before bed and if nothing happens, take a wild guess what happens AFTER I put him in his nighttime pullup and go downstairs? He is considered toilet trained— so darn it, I want HIM to take responsibility sometime in this century for his own bodily functions— I want him to understand what it feels like to have the need to urinate or defecate and transmit that feeling to his brain and have his brain tell him to ACT upon it. Any ideas, folks? Otherwise, right before he walks down the aisle at his wedding I’ll be TELLING him to go potty.

Wilma has the same pee problem— she needs to be told—- but every now and then she DOES initiate for pee— it’s so wonderful to hear the words “I have to go to the bathroom”. Poop? Well. After 4 xrays, a spinal MRI, manometry, metamucil, ex-lax, probiotics, 3 miralax cleanouts, 1 enema cleanout and at least 2 enemas a week, her PHYSICAL megacolon/ encopresis problem is indeed FIXED. There is no way this child is having a physical problem anymore. However, at almost age 7, she still shows NO signs of understanding when she needs to poop— no dance, no nothing. Every night after dinner I tell her to go poop. Most nights she does. Some nights she tries and doesn’t succeed and I give her an enema and that’s the only way we MOSTLY avoid accidents. But some days, like today, I’m taken back to the days of 10-17 poops per day never in the toilet. Today she had a horrible “accident” (hard not to put it in quotes….. does she REALLY SERIOUSLY have NO idea it’s coming??? she’s NEVER initiated a poop in the toilet EVER!)—- I threw away her underpants, put her in a pullup, took away rewards for half an hour (no ipad time or computer time after homework), and she had another “accident”. I’m the one who gets kicked in the face while changing her (like a baby). I’m the one who gets shoes thrown at my head. But I’m not the one who walks in the door and complains about the smell. Anyone who walks into my house and complains about the smell needs to change an almost seven year old who doesn’t want to be changed. This girl will not be allowed to date until she takes responsibility for getting herself to the bathroom for every pee and every poop. In other words, she’ll be single and living with me forever.

SO sick of toileting. I do not have babies—- I DESERVE to be done with potty training.

Put a Bow On It

Wilma gets some of her poops in the toilet now—- because we have scheduled sits—- we still don’t think she has any feeling of it coming.  The muscles work, the nerve endings don’t.   So being the awesome enco mom I am, I check the size and shape of the poop each time before she flushes so we can give enemas appropriately.  Tonight I said “oooh that’s a pretty one” and she said “mommy, it’s not even wearing lip gloss or wearing a pink bow!”  HAH!  most moms have to learn the multiplication charts to help their kids with homework.  I have to learn the Bristol poop chart to learn how many enemas a week to give.  Looking forward to xray number 5 to see if the colon is shrinking enough that the rectum can regain feeling within the next year.  fun times!

Result!

okidokee—  I have big news.  6 and a half years old….. 4 GI cleanouts, 3 xrays, countless enemas, laxatives, probiotics….megacolon, non retentive encopresis……  3 days before the spinal MRI….. Wilma had her FIRST ON PURPOSE poop on the toilet that wasn’t enema induced.  YAY!  Sure, she had no idea it was coming, but she understands how to sit on the toilet and get her muscles to push and she’s willing to do it daily without a tantrum now (because of the results post enemas).  So our time to try is after dinner and she sat and tried and bless her soul— she had a result!!!!  And tomorrow she may poop herself twelve times but for tonight it’s a success!  🙂

More diagnoses— let’s add 560.30 to the list…..

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.

I should just rename this blog Poop and Stuff.

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.

I’m so sick of all the poooooppppppppp!

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!

 

Results from Monday’s test

The manometry was fun!  As much fun as sticking wires and balloons up your child’s butt COULD be…..

For most kids, it’s painful or irritating or annoying.  For Wilma?  She didn’t feel a darn thing.  The computer showed that her rectum and shpincter work just fine— but they filled the balloon to the extent that most kids desperately have to go to the bathroom and she didn’t feel any difference.

So we know that it’s not her hypotonia—- it could be a nerve ending issue.  It’s not just the autism or just the adhd. It’s not Hirschsprung’s disease.

So now we do further testing— is it a very mild spina bifida?  Is it a very mild cerebral palsy?  WHY can’t a six year old, whose muscles WORK, toilet train for #2?  The mystery continues.

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