As physicians, we are trained on the classic medical model. A patient has a symptom, we do a test, we find a disease, we give a therapy, and the issue goes away. Unfortunately, chronic diseases like functional abdominal pain do not fit neatly into this model.
The majority of the hundreds of thousands of children a year who experience abdominal pain will improve with time. But for some children, their pain becomes chronic and debilitating. According to the Rome IV guidelines, once a child has experienced eight weeks of abdominal pain, we have to consider functional abdominal pain.
What is functional abdominal pain?
Functional abdominal pain in children is chronic stomach pain that lasts for a few weeks. It is a real disease and it is not a diagnosis of exclusion. It is a disease that results from maladaptive interactions of the “ brain-gut connection.”
Our goal is to get children back to living their lives. ~ Dr. Samuel Nurko
Children with functional abdominal pain may experience diarrhea, constipation, headaches or other symptoms. Children can become very disabled — withdrawing from activities, not going to school and sometimes never even leaving the house. Our goal is to get them back to living their lives and to control their symptoms.
How is functional abdominal pain diagnosed?
Unfortunately, there is no biomarker. Most patients with functional abdominal pain do not need any testing and we will make a positive diagnosis of functional abdominal pain based on a physical exam, signs and symptoms.
However, when we get a referral, we may do testing if there are alarm signs like weight loss, blood in the stool or a family history of IBD.
Pediatricians may find functional abdominal pain difficult to diagnose because the pain is not indicative of another underlying disease — the pain is the disease. Clinicians can get stuck looking for the reason behind the pain instead of referring their patient to a pediatric gastroenterologist who specializes in treating functional gastrointestinal disorders (FGIDs) such as functional abdominal pain to treat the functional pain.
How do parents react when their child is diagnosed with functional abdominal pain?
As parents, we hate to see our children in pain and we want them to feel better. If the right approach is not provided, many families seek multiple opinions and want more and more testing (which invariably is negative) as they are worried something is being missed. In fact, 30 percent of my patients have had unnecessary surgeries. It’s heartbreaking.
When I tell families that the pain is the disease, that the pain is real, that the pain is not “in their head” and there is nothing structurally wrong with their child, they feel validated and relieved that someone finally believes them and understands them.
There’s a cultural phenomenon where we accept certain chronic pain conditions, like migraines for migraines and do not demand more testing; it’s not that way with abdominal pain. We need to educate parents and pediatricians that chronic abdominal pain should be treated as just that – pain.
At the same time, our expert group can identify alarm signs, or other symptoms, signs or triggers that may prompt us to perform more evaluation.
What is the best way to treat functional abdominal pain?
After we give a positive diagnosis, our program’s dedicated team of GI doctors, nurses, nutritionist, pain specialists, psychiatrists and social workers come together to identify triggers, relieve the child’s abdominal pain and address any related issues, such as difficulty going to school, pain, headaches, fatigue, anxiety or depression. There are genetic, physical and social factors that can contribute to the development of functional abdominal pain in childhood, so we look at all of those together and come up with a plan in the context of a rehabilitation model.
We use medications, diet, cognitive therapies, physical therapy, and identification and treatment of specific triggers of the pain. We work on school reintegration plans. Every child’s treatment is different, but overall, we have an 85% success rate.
The relationship between the caregiver and the patient is such an important part of the equation and I’m lucky to have such a great team of caregivers. The validation, the explanation , the treatments and the support we offer are all keys to our success.
Life doesn’t get easier as you get older. The pressures of life continue, so we teach our patients coping techniques. When we’re able to help a patient and see them return to living a full life — that is so rewarding.
What tips would you give a pediatrician who suspects their patient has functional abdominal pain?
My biggest piece of advice is to acknowledge your patient’s pain. Explain to them that it’s an issue with the body’s software, not the hardware. You can say, “I understand exactly what you have. I have a roadmap for you. Your pain is real. Your disease is real.” If you think screening tests are necessary, frame them as “tests to make sure there are no identifiable triggers,” instead of, “tests to see why you have pain.” It’s a subtle change in semantics, but it makes a huge difference, particularly when the tests are negative.
Refer them to a pediatric gastroenterologist who specializes in functional abdominal pain.
What’s on the horizon for you?
I’m currently studying the brain-gut connection to better understand the pathophysiologic mechanisms behind conditions like functional abdominal pain and find a biomarker which will validate that functional diseases are real.
I’m also working with the Rome Foundation to write talking points for pediatricians. If we can all learn to say, “Your pain is real. Functional abdominal pain is a real disease. We’re going to refer you to a GI specialist to find your triggers,” instead of sending them over and over to the ED to look for a cause of the pain, then we will help so many more children get better.
Learn more about Boston Children’s Functional Abdominal Pain Program.
About the author: Samuel Nurko, MD, MPH is the director of the Motility and Functional Gastrointestinal Disorders Center and the Functional Abdominal Pain Program at Boston Children’s Hospital. He is the first and only pediatric gastroenterologist on the board of the Rome Foundation.