Hi BPN,
So we have been struggling with our 6+yr old’s potty issues for years. We have the pee issue mostly ok, but have never gotten a handle on the poop front. We have seen a long list of providers over the years including various psychologists, a gastroenterologist, a potty consultant and a biofeedback specialist. Though we have gotten a diagnosis of encopresis, no “treatment” regimen has had any helpful effect and we remain very lost on both the physiological and the psychological aspects. Now that our child is in elementary school, this issue is really having a major effect on quality of life (both our child’s and ours). Has anyone gone through this, what eventually helped, and what type of providers helped with the diagnosis or the solution?
Feeling Stressed and Desperate
Feel free to PM me if possible. It can be really hard. Keeping things moving and avoiding getting backed up is key, and can mean daily doses of Miralax (for years), maybe also with prune juice, flax oil, and avoiding constipating foods, and prioritizing high-fiber ones. Regular potty try times, 10-15 minutes after every meal, and clean outs as needed. For some people, I've been told that they need Miralax for their lifetime. :(
Up until recently, we have had this very same issue with the same age kid. One thing that really has helped, rather than us watch for signs of him holding in his poop until he got constipated or had an accident was to get a potty watch. There are kinds where you can set them for intervals as short as every 15 minutes or as long as 90 minutes. Every time the watch buzzes, the kid has to go to the bathroom and check, even if they don't feel anything. This has not solved ALL our problems, but it has really helped. It also takes the onus off of us, the parents, to constantly monitor him and bother him by telling him to go check and leaves it up to a neutral party (the watch).
Oh my. I am mostly posting just to commiserate. Would you believe I have an 8 year old who has had encopresis since she was 5. She does see a gastroenterologist at Children's Oakland, as as you can imagine, we have tried so many things. The best the gastroenterologist has had to offer is to switch up her meds here and there and provide the usual advice about setting potty time etc. We have done some additional testing and will do more. From all I have read the impression I have is that there are some kids who just have this and it goes on for years sometimes. Then magically goes away once their bodies get a little older. I wish I had more to offer. I just want to let you know you aren't alone in this. And of course I will follow this thread to see if anyone else has figured out something we haven't! Thank you for posting.
Hi, I’m so sorry you’re dealing with this. It sounds like you’ve seen various specialists, and so maybe you’ve already ruled out underlying medical diagnoses. I thought I’d just offer our experience since we struggled with this for years with my daughter, who is now 5. She ended up getting diagnosed with Celiac Disease, and the combination of a strict gluten free diet and daily Miralax for about 6 months helped her stool issues completely resolve. (She hasn’t had any further problems with stool withholding, leakage, constipation, etc). There was also some behavioral component, and having her sit alone on the potty at the same time each day after a meal also helped. We tried all the typical diet-related advice for years (increase fiber, vegetables/fruit, nondairy fat, prune juice, increase fluids, etc), and it wasn’t until we were aggressive with the Miralax that we started seeing a difference. It also took the pressure off and reduced my nagging related to food and fluid intake.
Celiac was not on our radar, but I’ve since learned it’s way more common than I realized, has a wide variety of symptoms (especially in children), and the initial test is just a panel of bloodwork. I had no idea it runs in families and is an autoimmune disease (not a food allergy). If your child hasn’t been tested already I think it’s worth ruling it out. (Just FYI, you need to be eating gluten daily for the bloodwork to be accurate). Good luck!
I feel your pain! Encopresis is not easy. My daughter was diagnosed when she was 4 and we have had our ups and downs. As a starting point I bought the book "The Ins and Outs of Poop" by Thomas R. Duhamel, which came recommended and then I joined a few facebook encopresis support groups. I felt the most helpful thing was to get educated about the condition and to talk to other parents about it. I have had some really insightful information come from the group that helped the way I view the condition. The gastroenterologist should be the most helpful in regards to the physical aspects. Though, to be honest, mine has only been moderately helpful. I feel that I have to be very proactive in scheduling phone visits and emailing to get more information. If you need to talk, please feel free to reach out.
I was feeling pretty stressed and desperate about this with my 4 year old a few weeks ago but we've tried a few things, after speaking with our alternative pediatrician: Christine Ciavarella (we have a Kaiser pediatrician, but sometimes I call Christine instead because she is more personal and wonderful and often helps in ways Western Medicine doesn't). My daughter kept pooping her pants at preschool and then was too shy to tell the teacher, and would sometimes sit in it for lunch. I felt so helpless and I truly think each child is different and has different needs but here's what seems to be working for us (fingers crossed):
My daughter is very imaginative and creative and smart...so I feel like her brain is often way ahead of her body. She seems to be "in her head" so often that she either doesn't sense the poop coming, or (with pee) just doesn't want to stop her playing to do something as boring as go potty.
So we've been focusing on 3 things:
1) Routine (trying at first to get up a little early, or keeping her home a little late from preschool to establish a routine of poop IN THE POTTY rather than in her pants. Be consistent to establish routine.) After a week or two, she was ready to go to school without pooping, and thought she could remember to do it at school. She did! And she even has added a BM some afternoons but has made it to the potty.
2) Body awareness "exercises" - some little games, and tricks to help her be more grounded and "in her body." I've told her they're to help her sleep better, but they also seem to be helping her get to the potty on time. These are KEY. I really think they are helping with body awareness. We do them before bed. One is with a yoga ball (fun!) and one involves rolling her up like a burrito (also fun!!)
3) We've been giving her a little fiber every morning (which scared me at first, because I thought this was for constipation, but supposedly can help regulate both loose or solid BMs). This, I told her, was to help slow down her poop, so she can feel it coming and get to the potty in time. This also, seems to be really working.
I also ALWAYS notice more accidents when she's not getting enough sleep. Which can be often, because her brain is so active. That's why the exercises are so helpful at bedtime.
These 3 things have really seemed to shift the pattern for her with poop. Feel free to contact me. Or Christine. She's great.
As for pee...we finally broke down and are doing an incentive sticker chart. This is because the pee accidents are more willful (she just doesn't see the point of stopping her game to go). I was told this really works for some kids, even though I thought this wasn't the best parenting technique. So this is starting to work. Switching up the "prize" each week.
Good Luck!
I’m so sorry you’re struggling with this, it sounds really hard. I don’t have personal experience but I work in MH and asked a colleague about her thoughts.
TBS (therapeutic behavioral services) has helped a lot of kids with enuresis and encoprisis - though I don’t have a specific referral for anyone currently accepting clients.
She also recommended you might explore working with an OT to assess for sensory issues, sensory issues get overlooked a lot and tactile input can have a major effect on encoprisis.
My kid is now grown, but we had this painful issue when he was 3-5. The only thing that worked was Soiling Solutions (https://www.encopresis.com/). It sounds like a weird program and I was very worried to try it, but I only wish we had tried it sooner. Like you, we tried sooo many things first, basically everything, including therapists, timers, bribes, doctors, laxatives, and even me leaving work once a day to take my kid to the bathroom in kindergarten (yes, it got to that point). When I read that some kids could have this issue until their teen years, and it could cause permanent damage to the colon, I was ready to try anything. Well, Soiling Solutions worked. It was brutal for about 10 days and then it was done; he was "cured". After the program is over, you need to ensure they have soluble fiber every day (not Miralax or Metamucil) and the best source is Acacia Fiber powder. My kid had a teaspoon or two every morning in juice or a smoothie until he left for college! You can also bake it into oatmeal cookies, add to yogurt, etc. My kid needed quite a lot of the acacia but you will find out the right quantity for your child; start small and add more if it's not working. Plus lots of strawberries, blackberries, and blueberries and limit the bread, rice, apples, bananas, etc. Good luck. It was a long time ago for us, but I still remember the helpless feeling and I hope you find some relief for your child and your entire family.
My son had the same issue. We worked with the Pediatric Urology Service at UCSF and solved this issue quickly. Their Nurse Practitioners are fantastic and specialize in treating this issue. We meet over Zoom and it has been great.
Our kid (now 15) also had encopresis at that age. She still has issues with constipation, and has since she was an infant. We were told that she had a big poopy plug and that newer, softer poop would ooze around it. Thus the solution was first to clean out the plug using an enema, and then retrain her stretched-out bowels by giving her Miralax daily for at least a year so that her poop was very soft, near diarrhea. This dealt with the encopresis, but the underlying constipation remains a big issue. We still use a lot of Miralax and other fiber products.
Our kid also had ADHD, and I remember the doctor who diagnosed the ADHD nodding when I mentioned encopresis. The two conditions frequently co-occur.