5 yr old with ASD withholding poop and refusing potty and pull up-need help!

[Anonymous]

To make a long story short, my 5 yr old with ASD (HFA) and anxiety disorder has never been able to poop in the potty (well maybe three times) and would only use the pull up. However, our latest try at poop training with an experienced ABA therapist backfired over vacation and he held it for six days and we had to cut our vacation short as we were close to an ER visit. Since then, he’s been refusing the pull up and the potty. It’s been heartbreaking as we’ve had to do several rounds of “clean outs” with Miralax and the chocolate laxative (as directed by our pediatrician) which has made his anxiety skyrocket. We had several days of him writhing for hours trying to hold in his poop which is diarrhea at his point. Makes me cry just writing about it! Now he’s gone a few times but he will only go standing up on our patio. The first time was an accident and now it’s the only place he will go.

I feel like everyone on our team is not being helpful and I am feeling desperate. We have done the sticker charts, tried cutting a hole in the pull up, doing practice sits for 20 minutes with the iPad, social stories, diagrams etc. I have consulted two developmental pediatricians, child psychologist, potty coach, OT and now an ABA therapist (who’s away so I am flying solo right now).

I only let him go on the patio because he was willing to go out here but now he’s regressed so far that I don’t know how to get him back to the bathroom. I have asked why he’s scared and he’s language delayed but he’ll say he’s scared it will hurt (he’s been on Miralax for a year) and that “poopie stays in my tushie-it doesn’t come out, only pee pee.”

My dev ped thinks it may be time for Prozac and I am totally willing to consider that but I need immediate help right now. I was thinking of covering the toilet bowl with a paper towel and telling him it’s ok to poop standing up (which he has refused before-but worthy a try again). It’s something about the sitting and pushing that freaks him out.

If anyone has suggestions or a great potty coach or anything to add for me to try, I’d be so grateful. I am really going out on a limb being so honest with my situation so I am asking folks to please be kind in their responses. Thanks so much.

[Anonymous]

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[Anonymous]

It sounds like the different setting or break threw things off.

I would definitely try medication.

Can you just put him in a diaper or underwear and let him poop and just change him. This obviously would be short term while the medication can start to work.

[Anonymous]

OP, I feel you - my child wished he could poop standing up. We had a hard time with potty training and then a bad bowel impaction situation after a tough preschool experience. What has worked for us is Culturelle's kid probiotic with fiber for regularity and letting him poop on a potty seat in his room. Eventually he also became comfortable on the regular toilet but when he's feeling bad, he goes for the little potty. Good luck to you - this is tough and it's hard to ask friends about potty stuff.

[Anonymous]

Oh man- I feel you OP. This has to be so stressful. I don’t know- maybe there is just so much attention towards this specific issue and so many competing therapies that it’s just too much for him. I think my first goal would be to just get him to wear a pull-up again and poop in there again. This way he is going and it’s contained and he is not holding it. I would also encourage medication per your dev ped. This is not easy, but you know what... It will pass.

[Anonymous]

You didn't mention enemas. Have you tried them? We had to resort to enemas. We only had to do it a few times. My child hated the emema way more than he hated popping on the toilet so he finally agreed to do it. And now we are past that horrible phase. I remember how stressful it was. Good luck!

[Anonymous]

Anonymous wrote:You didn't mention enemas. Have you tried them? We had to resort to enemas. We only had to do it a few times. My child hated the emema way more than he hated popping on the toilet so he finally agreed to do it. And now we are past that horrible phase. I remember how stressful it was. Good luck!

I would try a suppository b/f I would even attempt an enema. No kid likes either. But a suppository is easier to slip in with a struggling kid. I would try to avoid either if you can, op. Your poor kid sounds stressed out as it is.

[Anonymous]

Pedialax glycerin suppositories were a lifesaver when it was really, really bad for us.

While not exactly fun, they prevented fissures and pain and the feeling was so urgent right after that my DD (same age) was able to “feel the feeling” and then push it out on the toilet. Before that she was terrified to sit and push. With her doctor’s help we used those only a few times and she began getting the hang of it.

They are not habit forming and I wouldn’t have tried it unless we were having no luck any other way, but she managed very well on her own after that. She had extreme anxiety comorbid with ADHD.

[Anonymous]

I am so sorry, OP. You are doing great—I know it doesn't feel like that, but you will make progress.

Your child has to poop regularly to avoid making this worse, so it makes sense to do whatever you can do for that to happen, even if it feels like a regression right now. The anxiety is too strong.

Considering Prozac is a great idea—with anxiety, I have heard that the response time can be as little as 1-2 weeks. Once you can remove the anxiety as a variable, you can work at establishing the toilet as a habit. Baby steps.

Hang in there—this is beyond stressful.

[Anonymous]

I would recommend getting this book: It Hurts When I Poop: A Story for Children Who Are Scared to Use the Potty
https://www.amazon.com/gp/product/1433801302/ref=ox_sc_sfl_title_27?ie=UTF8&psc=1&smid=ATVPDKIKX0DER

Also, it seems like you are in crisis. I would back off for a week and let everything calm down and then retry the potty training.

[Anonymous]

Op here-thank you all for your kind words and encouragement. I really appreciate the suggestions too! We have that probiotic the PP listed and I totally forgot about that so we will try that. I’d love for him to go in the pull up again but he’s totally refusing which in a way isn’t the worst thing in the long run for potty training-just makes things much more difficult now. We are doing everything possible to avoid enemas because I think it would traumatize him, but I appreciate hearing the PP’s experience with that and that there was light at the end of that tunnel. Yes definitely we are putting all the potty talk and potty training on hold right now-it’s just too much for him.

I actually tried the suppository and he exerted his will and held in the poop! I was astonished given how much Miralax he’d had too. I was able to meet with our ABA today and we are going to try to get him to poop outside 2-3 times on a dog training pad (like the ones you get post partum for your bed) and have him help me clean up the pad and poop etc to give him some control and ownership. And then slowly move the pad back towards the bathroom (on the floor), to on the toilet bowl if necessary. Oh my gosh you guys, I can’t make this stuff up! I am grateful I have a place to talk about trying to get my rising kindergartener to poop on a puppy poop pad in my yard...! Calgon take me away

[Anonymous]

Anonymous wrote:Op here-thank you all for your kind words and encouragement. I really appreciate the suggestions too! We have that probiotic the PP listed and I totally forgot about that so we will try that. I’d love for him to go in the pull up again but he’s totally refusing which in a way isn’t the worst thing in the long run for potty training-just makes things much more difficult now. We are doing everything possible to avoid enemas because I think it would traumatize him, but I appreciate hearing the PP’s experience with that and that there was light at the end of that tunnel. Yes definitely we are putting all the potty talk and potty training on hold right now-it’s just too much for him.

I actually tried the suppository and he exerted his will and held in the poop! I was astonished given how much Miralax he’d had too. I was able to meet with our ABA today and we are going to try to get him to poop outside 2-3 times on a dog training pad (like the ones you get post partum for your bed) and have him help me clean up the pad and poop etc to give him some control and ownership. And then slowly move the pad back towards the bathroom (on the floor), to on the toilet bowl if necessary. Oh my gosh you guys, I can’t make this stuff up! I am grateful I have a place to talk about trying to get my rising kindergartener to poop on a puppy poop pad in my yard...! Calgon take me away

Oh, my gosh please revisit the medication ASAP. No kid wants or needs to be this anxious or sensory averse to pooping.

[Anonymous]

Prozac takes weeks to work. Has the dev ped mentioned hydroxizine?

[Anonymous]

To OP - have you tried a pediatric gastroenterologist who understands autism? Our ASD/HFA/ADHD child was diagnosed late (15) in life. Our pediatrician didn't have a clue about the link between gut issues and auutism. We finally found a pediatric gastro. who understands the issue. Dr. Sirlin in Fairfax. Our poor DC had megacolon and fecalomas and probably had had them for years.

[Anonymous]

How about the squatty potty?