Preparing for your appointment

Hirschsprung's disease is often diagnosed in the hospital shortly after birth, or signs of the disease show up later. If your child has signs or symptoms that worry you, particularly constipation and a swollen abdomen, talk to your doctor.

You might be referred to a digestive disorders specialist (gastroenterologist) or to the emergency department if your child's symptoms are severe.

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask if there's anything your child needs to do in advance, such as fasting for a specific test. Make a list of:

  • Your child's signs or symptoms, including details about bowel movements — frequency, consistency, color and associated pain
  • Your child's key medical information, including other conditions he or she has and family medical history
  • All medications, vitamins or supplements your child is taking and how much water he or she drinks in a typical day
  • Questions to ask your child's doctor

Take a family member or friend along, if possible, to help you remember the information you're given.

For Hirschsprung's disease, basic questions to ask your doctor include:

  • What is likely causing my child's symptoms?
  • What are other possible causes?
  • What tests does my child need?
  • What's the best course of action?
  • If you recommend surgery, what should I expect from my child's recovery?
  • What are the risks of surgery?
  • What's my child's long-term prognosis after surgery?
  • Will my child need to follow a special diet?
  • Are there any brochures or other printed materials I can have? What websites do you recommend?

Don't hesitate to ask other questions.

What to expect from the doctor

Your child's doctor is likely to ask you questions, including:

  • When did your child's symptoms begin?
  • Have the symptoms worsened?
  • How often does your child have a bowel movement?
  • Are your child's bowel movements painful?
  • Are your child's stools loose? Do they contain blood?
  • Has your child been vomiting?
  • Does your child tire easily?
  • What, if anything, seems to improve your child's symptoms?
  • What, if anything, appears to worsen your child's symptoms?
Aug. 19, 2017
  1. What I need to know about Hischsprung disease. National Institute for Diabetes and Digestive and Kidney Disease. Accessed Jan. 6, 2016.
  2. Wesson, DE. Congenital aganglionic megacolon (Hirschsprung disease). Accessed Jan. 6, 2016.
  3. Tjaden NEB, et al. The developmental etiology and pathogenesis of Hirschsprung disease. Translational Research. 2013;162:1.