On the way to probable cecostomy our latest protocol has Wilma leaking like a faucet. My 9 year old is back in pullups and I go into public bathroom stalls with her to see if she needs to be changed. I carry adult size pullups and wipes in my purse. I just wanted to share here and say….. argh! Thanks. That’s all.
Nervous and excited about the possibility of cecostomy. On the one hand, she will likely ONLY poop in the evening– in a toilet— during the time we run the flush through the tubing. On the other hand, it’s surgery— it’s more drastic, and it might be difficult to get used to the lifestyle changes needed (an hour a day of sitting on the toilet, dealing with the tube….. oy.
During this protocol (NIGHTLY ENEMAS— EVERY friggin night….), the GI specialist is out of town. For a month. Out of the country. Yeah, fun times.
my 9 year old enco/megacolon gal felt an impending bowel movement coming! “I have a poop stuck in my butt” made me happy. It went in the toilet, y’all! Second time in 2 months. I still think we’re leaning towards cecostomy at this point, but I still take pleasure in knowing that 2 poops in the past 2 months got past her lack of RAIR and anal manometry doesn’t show the whole picture. Woot!
I caught my 9 year old Wilma FIDGETING (doing a poop dance)—- she NEVER EVER does that— her only toilet poops are scheduled (always happening after dinner when I TELL her to go) or enema-ed (if she doesn’t poop after dinner I HELP her poop after dinner). This one was enormous enough (thanks megacolon) that her lack of RAIR (failed two anal manometries) somehow picked this one up— she had to poop! It wasn’t even dinner time yet! Did she register that? No— she still got a little in the underwear but I told her to run to the toilet and get the rest out and whammmmo! Go girlie! woot!
Apparently there is SOME nerve ending power there— it just has to be SUCH a massive bowel movement that it would explode the colon of almost anyone else for her to feel the urge.
Here’s a post I’m not sharing to all of my facebook friends. If you’re following this blog you either know me super well and I’ve invited you here (and you’re good with poop posts), or you don’t know me at all because we’re anonymous here.
Some nights I just want to chuck the risperdal, vitamin D, multivitamins, probiotics, fish oil, geodon, adderall, colace, NAC, tenex (gotta crush that one of course), and last week benadryl (but no more albuterol because I was told maybe THAT caused more aggression) (Fred was sick- he’s fine now, but every time he gets a cold he gets R.A.D.) ………..out the window and just tell the kids to go to bed. There are families out there who don’t have pharmacy hour between exercise time and bedtime– amazing.
risperdal—– WAS working well for Fred. Until now. He’s now at the highest dosage and he’s been suspended from school 5 days out of the past 6 weeks. Emergency IEP meeting—- I asked for a 1:1 aide. Denied because “he has more good days than bad”. I asked that they stop suspending him because you can’t suspend impulse control into a kid with autism. Denied. I asked for another FBA– got THAT rolling.
Vitamin D—- Wilma is low. Duh, we’re in Ohio. Why is Fred not low?
Geodon— working fairly well— she’s having a good year. Today I was told at her anal manometry that they’ve not usually done manometries on kids on such strong anti-psychotics. yeah, ok.
Adderall— working super well—- she always does homework nicely, and always sits through class well, needing just a few breaks per day.
Tenex— just added it for the finger picking and forehead picking…… she gets one pimple and spreads it into a little colony by picking and picking. Fun times. Tried tenex before and it did nothing, but that was years ago.
Wilma failed her second anal manometry today. This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.
Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?) The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.