My 7.5 yo (he won't let me forget the extra half year!) was diagnosed with ADHD in the fall of 2019 while in a program at a local children's psychiatric hospital where the staff was attempting to counsel us through daytime enuresis/encopresis. He had a urologist at the local hospital and a therapist who was a member of the children's GI clinic.
He is now on medication that helps him focus and recognize his body's signals. My problem is this: my little man still has daily accidents, and the people who were helping us at the local hospital seem to have given up on us. They tell us to "keep doing what we're doing" (ie. Charts, timed bathroom breaks, 504 at school), but we aren't making progress. The therapist has stopped our sessions; I thought we had a good relationship, but when we ran into a brick wall trying to help his nighttime wettings (the other docs told us not to worry about nighttime until the daytime was settled, but the therapist said it was important so we did our best), she recommended we stop our regular appointments because "we seem to be doing well". The urologist has no advice other than to say he's healthy (they've run no tests, which may be appropriate given the situation, but I don't know). I'm to keep giving him miralax to prevent constipation, which was a problem for him when we started down this road.
I feel like I should be trying something more to help my son.
I live in the northeast U.S. Does anyone recommend any specialists or programs, or do you have any advice on next steps? Simply waiting and hoping and following the routines we've learned feels like I'm failing my son. We did that for years with the pediatrician ("just keep working on potty training - he'll get it"), and it's one of my biggest parenting regrets.
Thank you all, in advance, for any thoughts.
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MomOfSuperheroes
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We are so glad you found us. We are always here for you. Our son is 14 years old now and was diagnosed with a rare chronic syndrome after years of test, consults and procedures. He now has very few symptoms. He went from weekly to now rarely. I spent years looking, researching and worring about him. Now guess what no more ( just rarely) does he have the symptoms.
Children with ADHD "tend" to function about 2 years younger than there chronical age. So it's more like he is a 5.5 years old. If you think about it that way, if you contuine to "time train" him during the day he should stop having accidents. I also know for us we stoped talking about our issue and only delt with it when it was happening to try to have him function as normal as possible without his health impacting him daily.
We of course support him with his ADHD symptoms with medication, educational plan and thearpy. Just now life is getting so much better for us. I hope these thoughts help you. Maturity helps so much!
My son is 11 and still is not dry at night (95% of the time). But he now is dry during the day nearly 100%. Since my family has a history of boys not being dry at night until the mid-teen years, we didn't spend much time focusing on that (and still don't).
We tried all the things you tried for daytime. Here are some additional things we tried:
- no wheat, no dairy. For my son if he was off just one of the two, there were no changes. But if he was off both, we saw significant reduction in the daytime accidents.
- we used a watch for a while that would vibrate when it was time for him to use the potty (so it wouldn't disrupt the class).
- we trained him to check his crotch a lot so that he would catch the accident when it was the size of a quarter.
- we wrote it into his 504 plan that he needs regular bathroom breaks. And we'd ask each teacher to set up a schedule with our kid (K-2nd) for extra bathroom breaks. Some teachers did it 5 min before recess, others did it when recess ended, etc. By 3rd grade, we felt he should ask on his own and take more responsibility.
- every year we provide the school and the teacher with a letter from the Dr stating that he needs open access to the bathroom due to a medical issue.
- brainstorm with your son. Ask him what techniques he thinks would help. Write them all down plus the ones you come up with. Ask him which ones he thinks might help or that he'd be willing to try. Label the top 3 and try those either together or one at a time. Then move on to the next 3 if the first ones didn't work or didn't work enough.
- remember that this is a medical issue and not his fault. Treat it as such. Therefore he does not get in trouble if he has an accident. Just matter of factly have him change. Teach him what to do with his laundry.
- always have at least one change of clothes (in a ziplock bag) in his backpack and in your car.
- at this point, this is unlikely to be a therapy issue. So unless he has anxiety or depression because of his enuresis, or unless he's finding it helpful in some way, it's just a waste of time.
- we did do some tests, but just the non-invasive ones: xray to check for constipation, ultrasound of both full and empty bladder, urinalysis, etc
- like you, we did the miralax route for quite a while.
For some people, wheat/gluten can cause a sensitivity in the bladder. The bladder can become irritated and inflamed on the inside which leads to needing to pee more often and less control of bladder urges.
I'm happy to give an update that now my son no longer has night time accidents. It's been about 2 years since that finally stopped. He's now 14. He is still 99% gluten-free. But he eats dairy a lot. Occasionally he gets constipation and needs to take miralax for a few days. But that doesn't trigger any pee leakage anymore.
I don’t have advice on where to get a second opinion but want to send a virtual hug. My sister went through this with her son, now 16. It is hard on different levels—the physical routine, teaching, diet, medication but also the mental work as a parent in staying positive, monitoring your own feeling of frustration and worry, and being your child’s cheerleader. It was very challenging for my sister and her son. They say it takes at least the same amount of time it did to develop as it does to resolve. The nerves need to relearn how to sense the correct volume to trigger an urge again. It took several years for my nephew and they still—even now— have to be very careful with his fiber. Just wanted to say I feel for you and think it’s wonderful that you are doing all you can and leaving no stone unturned for your son. You aren’t alone and things will get better.
So sorry to hear of your struggle. I can relate. Our 8 yo daughter still deals with encopresis. She takes Focalin for her ADHD, which has had a positive impact on focus and emotional regulation. Last summer our doctor recommended a Miralax clean out, kind of like you would do for a colonoscopy. Then, she said to give her a daily dose of enough Miralax to make sure she poops every day. The clean out alleviated the night time wetting, and the regular Miralax maintenance has lessened the accidents, but she still has them sometimes. Know that you are not alone. I wish you all the best.
Thank you all so much for your support and advice. It does make a difference to see we aren't alone. Some wouldn't believe how many times I've heard from a teacher or caregiver that they've never had to work with accidents in a kid his age, not so subtly implying that we've done something wrong or that my son simply isn't trying hard enough - but I'm guessing many of you have faced similar situations. Navigating through that successfully says a lot about you and your families.
We'll keep at it! Thank you again for your words. It means a great deal to us.
Yes... we heard that all the time. Honestly, as long as they are doing what we need it doesn't matter what they think. Your doing a great job and a few years from now you will have something else to worry about.
One day at a time and it will get better. Many of these "issues" he should out grow them.
Just saw your post searching for the same issue, but mine is a bit younger, almost 6. Wanted to tell you that you are definitely not alone!!! I am so tired of the dirty poopy underwear, the constant cleaning of the toilet, the school struggle and so on. Solidarity, sister.
I know this post is older but I wanted to say that you are not alone. My son is 7 and has always struggled with the potty. He will still have accidents during the day and is always wet overnight. He also poops his pants just about every day. He wears pull-ups and although we are working on him cleaning himself, I do still change him. Right now we are working on him telling me when it happens. Small steps. He has an IEP and gets changed at school. I am very thankful for the attention and support he gets from his teachers and the staff there.
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