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My daughter has was diagnosed with encopresis at age 7. She's had bad constipation since 5, but I thought it was a phase. She cries when she has a "flare up" as she calls it. I can see the pain in her eyes when they happen, and I want to help but I don't know how. She's had 3 disimpactions, which is probably not healthy. She's terrified of enemas and cried till she nearly passed out when she had one. We've done reward systems, bathroom time, and many medicines including
Senna
MiraLax
Dulcolax
Dozens of Fiber supplements
And numerous others.
She's been out of school many times due to her pain. She cries and scream and I give in and keep her out. It's very hard to see her in so much pain, and how she's different from when she was 5. When she was 5 she'd get out large stool that didn't even look like it'd fit in her stomach. I've run out of ideas, and don't know what to do anymore.
I'm sure you've looked into this stuff, but the following post mentions testing for lactose intolerance, trying therapy, and working on regular bowel movements. mayoclinic.org/diseases-conditions/encopresis/… I think you should consider homeschooling if that could help with regular bowel movement training and dietary adjustments. The embarrassing times at school for your daughter may also be very difficult and traumatic.
Encopresis to the extent you're describing is a medical problem. As MAA asked, are you working with a medical team familiar with encopresis? This is a must; parents can't handle this on their own. The bowel undergoes changes wherein the child doesn't feel the urge to go. See this answer for more information.
Are you working with a pediatric gastroenterologist? If not I would really push to get a referral. You are right that impaction is not healthy & for both your sakes I am sure you would be much happier having this handled & never having to visit an ER over something like that ever again.
Finding a good pediatric gastroenterologist is key here. We are on our third. The new doctor gave us a clear plan that we could actually follow and more importantly walked our son through exactly what would happen if he did not take the medicine and follow his instructions exactly. Now my son says that he does not like the taste of the medicine but it tastes much better than an operation would.
A few things I noticed: the article recommends changing diet to include little or no dairy (specifically from cow's milk), and to include lots of high-fiber foods - not fiber supplements. Which isn't to say supplements would be ineffective, it just sounds like it's better to change the actual foods to include a lot of veggies and not a lot of dairy (and possibly reduce gluten).
Second thing I noticed: at the end, the article says that if functional constipation lasts longer than 6 months, the child should be referred to a pediatric gastroenterologist. I'm sure that you guys have been working with doctors, but have you seen a specialist of this type?
Third thing: does your daughter really understand what is happening and why? The article suggests explaining to children who are old enough to understand, and it suggests that some behavioral therapy accompany any medical treatments. Have you tried these things? It seems the fear of painful bowel movements is key here, and if she can understand that the pain is caused by refusing to poop, she may be more willing. The article specifically says that after a disimpaction the goal is to have 2 soft stools per day (with the help of oral aids) for six months (which may require staying home at first for comfort purposes).
Fourth: the article lists other ways than enemas of disimpacting that are non-invasive, they're just slower. If your daughter needs disimpaction again, maybe explore one of these options so it's less traumatic for her.
Finally, this seems not to be a "solved" problem, medically speaking, as the article indicates that about half of children with this problem don't improve even after 5 years of treatment, and a third don't improve after 7 years of treatment. This observation is not meant to be discouraging, but rather to suggest that if you find a doctor with innovative solutions to try, you might want to.
Good answer! I have a problem with your statement(s): "...the article recommends changing diet to include little or no dairy (specifically from cow's milk), and to include lots of high-fiber foods - not fiber supplements. Which isn't to say supplements would be ineffective, it just sounds like it's better to change the actual foods to include a lot of veggies and not a lot of dairy (and possibly reduce gluten)." Your source article does not say this at all. It does say sometimes cow's milk is a problem, so a trial of dairy free is worth doing. Regarding fiber, your statement is misleading.
(cont.) From the source and its reference: "Significantly fewer children complained of abdominal pain and more children were successfully treated while on fiber (45%) as compared with placebo treatment (13%). Parents rated significantly more children (68%) as being better on fiber versus 13% as being better on placebo." If you're citing a source but changing what it says (which is fine), you need to make it clear what you've changed. E.g.: "The paper recommended fiber supplementation, but I think..." Gluten was never mentioned at all. I upvoted anyway, but this should be edited. Thanks.
@anongoodnurse thanks for the feedback. I read a number of different sources before finding this one as the most useful/comprehensive, so it’s possible I was remembering something from another source and mistakenly thinking it came from this one. Whoops :P
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