Talking to Your Child’s Healthcare Provider About Incontinence

This video explains how to organize your thoughts and concerns about your child’s incontinence so you can discuss them with their pediatrician or other healthcare provider. We suggest watching “Elimination Basics,” “Taking Initial Bowel Data,” “Urination Questions and Concerns,” “Could it Be Constipation?” and “The Constipation Cycle“before watching this video (and before taking your child to the doctor).

Associated Resources:

“The Bowel Symptom Checklist” (.pdf) is very useful when you speak to your child’s healthcare provider.

“The Constipation Traffic Lights” (.doc) is a treatment planning form you can bring to your appointment. It can help guide your conversation about how to treat your child, if they are diagnosed with constipation. It is shared in Word document form so your healthcare provider can fill in their specific plan.

A full transcript of the video appears below.

Hello, my name is Kelly Savitri. I’m a nurse with the Vermont Continence Project. In this video, I’m going to offer you some advice about how to talk to your child’s healthcare provider about your concerns regarding your child’s incontinence.

Many people think of their child’s incontinence as being mostly a developmental issue and that their child will learn when they’re ready. Some parents never mention their child’s incontinence to their provider or only do when they have a routine visit scheduled. We hope our videos have given you a hunch that medical concerns are also an important part of planning for your child’s continence and toilet learning. Since your provider is the only one who can diagnose, prescribe, and make a treatment plan for your child, they are an essential member of your team.

Functional constipation frequently goes undiagnosed for many reasons. At the Continence Project, we have worked with many different providers, and we have encountered a wide range of experience, knowledge, and comfort with diagnosing and treating incontinence concerns. Sometimes children have complex medical needs, and other concerns are higher priority, such as issues affecting the heart, lungs, or kidneys. So there isn’t as much time during an appointment to talk about incontinence. Many of the children who get referred to our project have neurodiverse diagnoses, such as autism, or they may have developmental delays. Often providers expect children with these kinds of diagnoses to have difficulty with toilet learning, so incontinence is not treated as a concern until they are much older. Finally, diagnosis of constipation tends to focus heavily on frequency. So a simple question like “How often does your child poop?” may not give a provider all the information that they need.

Sometimes we need to build a case by looking at all of the symptoms on the bowel symptom checklist put together. This is why we encourage caregivers to do some preparation before they go to their child’s healthcare provider. We like to think about this process in three parts, things you do before the appointment to prepare, things you do during the appointment, and things you can do afterwards.

To prepare before your child’s visit, take data on your child’s bowel patterns and bring this along. Healthcare providers like to know how long something has been going on and how severe the issue may be. Also, complete the Bowel Symptom Checklist and write down notes of anything else you feel is important to tell the PCP. When you schedule the appointment, tell the office what your concerns are. If your child’s PCP has an online communication system, such as UVM’s MyChart, you can share your observations and concerns and a completed copy of the Bowel Symptom Checklist through the portal. This way, you won’t need to explain as much in front of your child, which might embarrass them, and you’ll give the provider more time to consider your concerns. You may also want to print out a copy of the Constipation Traffic Lights form. If your child’s PCP does diagnose constipation, you can ask them to clarify how to know if the treatment is working.

During your child’s visit, remember that there is nothing to be embarrassed about. Most incontinence has some sort of medical cause, and a doctor is a great person to discuss it with. You may need to press your PCP about your concerns. For one thing, you may need to emphasize to your PCP that this is a big concern for you and that you need their help.

Use the Bowel Symptom Checklist to present your concerns. If you believe your child is constipated but their PCP doesn’t, consider asking them what they think might be causing your child’s incontinence struggles and their digestive symptoms. Once you’ve presented your case, your provider will make recommendations about a treatment plan. Remember that you are a partner in this process. If you have doubts or concerns, please voice them. Ask how long you should wait before expecting results. Also ask what kind of results you should expect. This is where the Constipation Traffic Lights are very helpful. Once your PCP defines what counts as green zone for your child, you will know whether your plan is working.

If the PCP prescribes medication with or without a clean-out, consider setting up a check-in with your PCP or another member of the office staff, such as a nurse, after the clean-out is complete or after they’ve been on medication for one or two weeks. Ask your provider what the best method is for you to ask questions about the treatment plan once you’ve started. They may recommend calling to talk to a nurse, or they might suggest messaging them directly on the patient portal. If so, make sure you know how to use that technology. After the visit, expect treatment to be an ongoing process that will require follow-up communication between you and your provider. If you’ve started a medication plan and have any questions as to whether it’s working, reach out to your PCP sooner rather than later. Remember that getting the right dose of medication might take some time. Utilize the traffic lights action plan to give you some idea of when to increase or decrease the medication depending on your child’s bowel movements.

Don’t settle for poor results. If your child continues to strain, stool less than once per day, have incomplete BMs, or they have excessively loose stools, work closely with the PCP to try something different. Most of the time we see families have fabulous success in creating healthy bowel patterns for their child with the help of their PCP. Every once in awhile, the usual treatment just doesn’t seem to be enough, and it’s possible that there is something more medically complex going on. In these situations, it may be necessary to ask for a referral to a gastroenterologist for further investigation.

Here’s some additional tips. Remember, if your child is on Medicaid, whether that’s Dr. Dynasaur, Katie Beckett, or another form of Medicaid, ask about getting a prescription for the diapers or briefs and medication they need. Most children who are incontinent are eligible, and chronic constipation is an eligible diagnosis. See our video on paying for necessary incontinence medication and supplies for more details about that.

Many provider offices are very busy, and communication can be difficult. Ask your provider if the office has a care coordinator or another person who is available to answer questions in a pinch if you’re having trouble.

Thank you for taking the time to watch this. The information contained in this video is for informational purposes only. It is not a substitute for professional health or medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider.