Stubborn kid with encopresis.
March 17, 2012 6:56 AM   Subscribe

Stubborn 12-year-old with primary retentive encopresis. Refuses help. What to do?

Our 12-year-old daughter has been dealing with encopresis for about 5 years now. She regularly sees a psychologist to talk about this and other behavioral issues, but no progress on this front.

Consultations with her pediatrician and a specialist in this sort of icky thing lay out a clear path of laxatives, regular bathroom visits, and a rewards program.

The problem is that this kid is one tough cookie. She now refuses all interventions and medications and refuses to even talk about the problem. Honestly, it's like trying to talk to a drug addict about her addiction.

She avoids going to the toilet at all. The result is continuous soiling and the production of an amazing huge toilet-clogging log-like object that every week or so.

At this point we're hoping she'll soon gain enough cognitive development to realize that this is a problem that she can fix with help from us. But that could take years. She has agreed to take a probiotic ("it's a vitamin, dear"), but that doesn't appear to help.

Any bright ideas, meta-people?
posted by schrodycat to Health & Fitness (16 answers total) 1 user marked this as a favorite
I suspect that the psychologist will already have tried this, but stories sometimes get through to children while other things don't. ERIC, the UK children's continence charity has a leaflet (warning - pdf link) which tells an encopresis story.
posted by Coobeastie at 7:08 AM on March 17, 2012

My 11 YO had retention issues, except that it manifested itself with fissures! He said it felt like hornets in his butt. Bleeding, etc. Not fun at all., for anyone.

Pediatrician prescribed Miralax, couple tablespoons once a day in clear juice with dinner. After a couple months he's no longer on it, and is as regular as the tide.

You gotta get through to her the importance of addressing this. Rewards, withholding the iPod -- whatever it takes.

Best of luck.
posted by bricksNmortar at 7:17 AM on March 17, 2012 [2 favorites]

I was kind of surprised to see probiotics as a treatment for encopresis, though I suppose I shouldn't have been surprised to see it on the internet. It doesn't really make theoretical sense as something that should help, and a quick perusal of the scientific literature on the subject shows that it is ineffective. This isn't to say that you shouldn't keep providing it, any inroads in getting her to acknowledge and address her issue are likely a good thing, even if it is not directly.
posted by Blasdelb at 7:18 AM on March 17, 2012 [3 favorites]

schrodycat - check your mefi mail
posted by jquinby at 7:29 AM on March 17, 2012

Speaking as both a parent and a teacher who works with teens who are described as "stubborn" by their parents and are in a residential school because they let the kids get out of control, I have a couple of things to mention:

First and foremost, she may be incredibly stubborn, but you're her parent and her behavior IS.NOT.OKAY. This isn't a choice she's allowed to make along the lines of what color backpack she should get for school; this is an incredibly serious health and psychological issue. You need to get this through her head in a very serious conversation.

Allowing her to be stubborn and refusing to discuss this (but also compromising her health) can be the beginning (or maybe continuation...I don't know) of allowing your daughter WAY too much power. What happens when at 13 she decides to stop telling you where she goes after school? When she's 14 and decides she wants to start smoking and also refuses to discuss it? When at 15 she decides that school is for suckers and stops going? This is a huge slippery slope and you need to lock this down, asap. And kids at 12 both need and desperately crave parents who make decisions for them.

Having said that, talking about poop habits for a 12 year old seems like probably one of the most horrifically embarrassing conversations she has to have, right up there with her developing body and boys. And it seems like these are regular conversations...with you, her doctor and her therapist? Oh man, that's really stressful for her, undoubtedly. Of course she doesn't want to discuss it; ick.

So what to do?

You need to regain control by having one major conversation that establishes you as alpha in the family along the lines of, "I know none of this has been easy; but we're at a point where there's a fairly simple solution to this and you need to be onboard with it, period."

Then you tell her that she can choose whatever desired object she wants (money, iPad) and she gets it on the condition of doing whatever thing the doctor said to do.

I guess what I'm saying (and forgive me if I am completely reading this wrong) is that your daughter has WAY too much power here, and you need to lock it down by telling her that this whole thing is done, she needs to do XYZ, and then she gets desired object.
posted by kinetic at 7:39 AM on March 17, 2012 [18 favorites]

This sounds not like powerful move by your out of control, powerful 12 year old, but the refuge of the powerless. Is there other spheres of her life that you can give her a sense of control so she can relax about this one?
posted by zia at 8:11 AM on March 17, 2012 [17 favorites]

Speaking as someone who had childhood encopresis

The likely reasons behind encopresis are extremely varied, pretty mysterious, and deeply psychological, but they are not about you. It has nothing to do with whether you are overbearing or alpha enough. I would also be very surprised if encopresis has ever been established as anything like a gateway drug to tobacco and truancy. This really is a discussion best had with your pediatrician and specialists, though there are pediatricians on AskMe who will no doubt join this thread with helpful advice. (I've already MeMailed one)

One thing that might help with ensuring compliance with her medication is divorcing the larger encopresis conversation as much as possible from the medication conversation and focusing as hard on that as you need to. Baby steps are perfectly fine to take.
    "Consultations with her pediatrician and a specialist in this sort of icky thing lay out a clear path of laxatives, regular bathroom visits, and a rewards program."
This really is the right answer here, pediatric encopresis is a pretty intensively studied phenomenon with a surprising number of professionals who do little else other than work to address it. Their recommendations really are your best bet here.
posted by Blasdelb at 8:21 AM on March 17, 2012 [9 favorites]

Again, maybe I'm reading the whole thing wrong.

But more often than not, one of the FIRST things new intakes do in my residential program is start holding it in.

Exactly what zia mentions, they do it because it's something they can control. But it's just.not.okay. and we work very hard with our kids to end it quickly.

I am concerned about this being a control issue because the OP says it's been going on for five years now, and I HAVE worked with way too many families who had similar issues with their kids, and they let the kid have the lead with encopresis (and other issues), and with at least six of those families, the kids did continue a downward spiral of being allowed to make irresponsible choices way too young because their parents wrung their hands and said, "She's stubborn. I can't tell her what to do."

So I'm sorry if it reads as harsh, but I have seen this exact downward spiral happen over the same thing.
posted by kinetic at 8:38 AM on March 17, 2012 [9 favorites]

Perhaps this won't address the psychological issues, but if she's constipated, Miralax is colorless and taste-free...
posted by IndigoRain at 9:52 AM on March 17, 2012

Also chiming in with the "sprinkling Miralax on food like cereal, or mixing it in juice, is what worked for my goddaughter" but of course that just addresses the mechanics of constipation and not the psychological issues.
posted by Sidhedevil at 10:13 AM on March 17, 2012

I would like to ask you to look at your own attitude towards her and this problem, also.
You talk about her as "stubborn," the problem as "icky," and you liken her to a drug addict. All this may be true, but your post sounds like you are totally squicked out by her, and the tone of you words is very judgmental. Maybe she is addicted to this behavior. An addict doesn't refuse help because she is stubborn. She refuses help because she doesn't know how to function without her addiction

A single post can't convey all the complexities of your relationship, of course, and probably you really do regard her as a wonderful person in all other ways and love her to bits. (My kids have driven me to drink over much less than this.) But your love is not coming across as you discuss her here.

So my question to you is, "What does your own therapist, or you family therapist, have to say about your relationship with her, and how are you working to make sure that your attitude in helping her with this problem is
1. loving and non-judgmental and
2. limit/boundary setting and
3. non-controlling?"
posted by SLC Mom at 12:20 PM on March 17, 2012 [7 favorites]

Traumatized-kid therapist here. What zia mentions above is what I hope you will hear loudly and clearly--your daughter is attempting to establish control. I really, strongly encourage you NOT to try to "regain control by having one major conversation that establishes you as alpha in the family" because this HIGHLY LIKELY to exacerbate the problem. (kinetic--all due respect, yes, it's important to eliminate the behavior for the health of the child, but you're going about it in a way that is opposite to understanding the underlying need, and the appropriate response to that need.)

You're engaging in a frustrating power struggle with your kid about this, which is Trap #1 to Avoid with a Preadolescent/Adolescent, and it's also really, really unhelpful and insensitive for you to liken her to a drug addict. Your daughter is holding on to her poop because she needs control of something in her life, and you're responding by trying to control her attempts to control her own body. Give her alternative outlets to gain feelings of control and mastery in her life, give her praise when she is able to have some success at things, and stop focusing on her refusal to poop, because chances are good that she will respond very positively to some backing off.
posted by so_gracefully at 12:53 PM on March 17, 2012 [10 favorites]

Primary retentive encopresis is a tough road, friend. I want you to know that I have a great deal of sympathy for you and your family and I learned so much from families in primary pediatric residency who deal with these kinds of persistent GI/GU issues. I know that it's difficult to talk about it with other parents in a way that they can understand the struggle without offering a lot of advice you've already tried. I know that it's a lot of referrals and a lot of battles that barely seem worth the hill your dying on.

If you're generally happy with your pediatrician and her/his referrals, it is likely a matter of letting go of any kind of time frame and slowly accumulating parts of the intervention program as she will accept them. Since she is also old enough to contribute to the household, perhaps you can talk to her about doing the laundry for a personal hamper, learning about preparing healthy food including fiber-rich food (many kids enjoy cooking and better eat that which they prepare, the key is to really let them do it), and learning about her own condition. At 12, she could use the internet or library to learn about PRE and help investigate the interventions that her specialists have suggested. At her developmental level, working on learning patient autonomy is a big deal. 8-12 is often the ages I see kids want to try having peds visits without mom or dad in the room at least for part of it, and the more autonomy and trust in their providers that this age group (and through adolescence) have, the more compliant with their treatment that they are. You could even schedule a peds visits just for her, and ask her ped to outline and explain her treatment plan just for her. Perhaps follow up with a treatment diary or phone app that she can use herself.

For the rest, I cannot underestimate her work with her own therapist, but I would encourage you to seek out that same support for yourself. Raising kids is hard enough without managing a medical diagnosis, especially one so poorly understood. It may really help you help her if your needs are being met and so change the atmosphere surrounding this issue. Even if you don't necessarily always talk to a therapist about her, just to have an outlet for your own growth and self as you're parenting is so important.
posted by rumposinc at 2:25 PM on March 17, 2012 [5 favorites]

Hi, I was your daughter. I did this from the ages of 5-16 or 17. I really only stopped once I had a lot of control over my own life, though I only understand it was a control issue in retrospect; if you'd asked me back then why I did it, I could not have told you.

Let your daughter work it out on her own. This is her problem, not yours. She will stop when she's ready.
posted by rabbitrabbit at 2:59 PM on March 17, 2012 [3 favorites]

Um, yeah... this is an awful situation, and from our experience I don't think it will get better by becoming a more "alpha" parent or "cracking down" or whatever.

We dealt with this w/a much younger kid, so maybe I'm off base. But I can't think it's that much different. What ended up working for us was to focus on rewarding a variety of desirable behaviors -- in our case, getting dressed w/o help, brushing teeth, etc. AS WELL AS POTTY SITTING -- and then ignoring the undesirable behavior. Being very matter of fact about messes, making the kid clean it up, etc.

The whole thing made me crazy. Really. I had to let Dad handle it as often as possible because I couldn't keep my cool, and that was key to the process. So yes, it's awful. I don't think I'd say 'drug addict,' but there were days I wanted to live somewhere else.

Do the Miralax. Make it non-negotiable, and do not, whatever you do, let her go a day w/o it. You may have to tweak the dosage, but stick with it.

Make the potty sitting routine an absolute, too. Allow her to read, or watch a DVD player, or whatever it takes to get her to stay there for 15 minutes at the same point in every day.

Work on a cheesy reward chart. Put several things on there, including the potty sitting routine, but not focusing just on that. Make the tasks realistic and super clear and follow up every single day. And I think we ignored whether there was "success" or not -- or maybe treated it as a separate thing. The focus was on the routine and healthy self-care.

Keep your cool. Put stickers on the chart. Make her deal with her mess as much as practical (which for a 12 yr old should be most of the time), and don't lecture.

It sounds like she's seeing the psychologist -- are YOU? Because really, I felt our visits w/the therapist were more for us. It helped with the insanity and trouble-shooting when it was necessary. That's where we got the idea for the DVD player. I thought she was nuts, but it worked, so there you go.

Good luck. I think you're on the right track, the key is to really be consistent, keep calm, and make it her problem instead of yours.

The good news is, our kid seems to have finally gotten things figured out. It's taken years, though -- this is not a straight road kind of thing, this is more of a mountain-climbing thing where you'll lose ground from time to time. Be patient.
posted by hms71 at 5:24 PM on March 17, 2012

My mom used to have the rule that I had to take my fluoride, vitamin, and eat a fruit, before I could eat my cereal for breakfast. I got to choose the fruit and it worked because I love cereal and can't stand to go a day without eating it for breakfast.

Instead of having it be some big deal that you have to argue about, can't you just have her take an actual vitamin (probably more useful than a probiotic) and her Miralax as part of some daily routine? You offer her control by allowing her to choose what she wants as a reward after that (hopefully it's something easy like cereal instead of an iPad!), and then every day she has a choice about whether she wants to have the thing she wants or if she wants to not, and you have to be ready to not act like it's a big deal either way. No big embarrassing discussions or confrontations, no begging, no bargaining, no snide remarks if she decides not to take the stuff, but the next morning "would you like to get your cereal this morning? I've got your medicine ready." If no, move on.

Note, I do not have children of my own but it worked on me as a child. You have to be rewarding with something they actually really want, though. My parents tried fining me with deductions from my allowance every time I didn't do my chores and they realized that I would rather lose the entire allowance if it meant I didn't have to do the dishes. They changed it to phone privileges and I quickly realized I wanted to be able to use the phone.
posted by treehorn+bunny at 7:01 PM on March 17, 2012 [1 favorite]

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