Children's Emergency Department is now located in Children's Tower: 1001 E. Marshall Street.

Learn more
View alerts close
Understanding the underlying causes of pain: A neuro-gastro approach to defeating dysautonomia
July 10, 2023
Adolescent girl lying on her bed at home

    A neuro-gastro approach to defeating dysautonomia

    The teen years are filled with great expectations, monumental milestones and constant change. Imagine navigating this critical time with chronic fatigue, dizziness, irritable bowel syndrome, migraines, vomiting or – worse yet – a combination of these with no explanation.

    What are autonomic disorders and why are they so complicated?

    In many cases, such as Gretchen Gregor’s, these symptoms indicate an autonomic disorder, or dysautonomia, which can be challenging to diagnose and treat without an in-depth understanding of the complex interaction between the body and brain. At CHoR, we have a dynamic duo – Drs. Gisela and Tom Chelimsky – that specializes in just this.

    Dr. Gisela Chelimsky, chief of pediatric gastroenterology, is a leading expert in neurogastroenterology and autonomic disorders. Her husband, Dr. Tom Chelimsky, is an autonomic neurologist and they work together to determine how the brain impacts the body’s responses to stimuli.

    The autonomic nervous system normally harmonizes all of our involuntary body functions such as heart rate, breathing, body temperature, digestion and more. But when the brain goes into a state of fight-or-flight the body functions come out of harmony and the result may be fainting, POTS, gastrointestinal disorders or chronic pain.

    Caring for common, yet complex, autonomic conditions

    “The brain-gut connection is absolutely critical, especially in kids,” said Dr. Tom. “Most of the conditions we see are directly related to how the nerves in the gut are talking to the nerves in the brain, which is why it’s so beneficial for a GI specialist and a neurological specialist to work together.”

    More than 70 million people across the world – or one in 10 – live with dysautonomia of various types, most often diagnosed in adolescence. The difficult part is that the reasons behind the pain and other symptoms don’t show up in tests or scans, so young people may search for answers for years. Dr. Gisela explains it as “a brain and gut software problem, not a hardware problem.” Another challenge is that, once diagnosed, there’s no quick fix to offer relief.

    “These patients are often dismissed by the medical system, being told ‘it’s all in your head,’” said Dr. Gisela. “The most important things I say the first time I see them are that I believe them, and I will work with them to try and help them feel better.”

    Ninety percent of Dr. Gisela’s patients suffer from chronic nausea. Other common autonomic conditions include POTS (postural orthostatic tachycardia syndrome), cyclic vomiting disorder, gastrointestinal motility disorders and chronic migraines, among others.

    Patients typically come to the Chelimskys through a referral from a primary care physician or other specialty provider with information including their vital signs and types and frequency of symptoms. The initial appointment is 240 minutes in total – 90 with each physician and 60 with psychologist and Chair of the Division of Child and Adolescent Psychology Dr. Jarrod Leffler, another key member of the team.

    An active, team approach to overcoming troublesome symptoms

    “We’re one of the only programs on the East Coast with the combination of a gastroenterologist, neurologist and psychologist,” added Dr. Tom. “I might even say that no one else in the country has the level of collaboration we do.”

    Psychology is important for a few reasons. One is that experiencing pain, exhaustion and other symptoms over time can have a profound impact on relationships, school, work and overall quality of life, which is naturally challenging for mental health. Another is that a primary treatment method for dysautonomia is biobehavioral. Additionally, it is critical to engage the patient’s parents and caregivers in treatment as they play a pivotal role in supporting and assisting their child in implementing new strategies to address these concerns. 

    “Your brain makes the decision of what is and is not pain. We need to change the way the brain is managing those signals to help reduce the pain our patients are experiencing,” said Dr. Gisela.

    The medical doctors work with patients on dietary changes, activity modifications with physical and occupational therapists, and non-addictive medications to help regulate pain. This is complemented by Dr. Leffler’s expertise helping patients interpret their physiological responses to situations, address stress and other factors that may bring on symptoms, and work on relaxation and other symptom management techniques.

    “This is an active rehab program. It’s essential that patients are willing to take ownership of the disease and take part in the process of addressing it rather than waiting for a magic pill which does not exist,” Drs. Gisela and Tom agreed.

    Expanding care for adolescents with autonomic conditions

    There’s a huge need for this comprehensive, coordinated approach to care. While Drs. Gisela and Tom are seeing as many patients as they can, they’re also sure to spend plenty of time with each one to thoroughly understand and address their needs. That’s why they’re working on hiring and training colleagues so these services can be expanded at CHoR. They also have several active research studies to ensure they’re providing the most advanced care for these complex conditions.

    Find out more about autonomic conditions and why families travel from throughout the country for care from the Chelimskys at CHoR.

    Meet CHoR patient Gretchen and learn how Dr. Gisela changed the course of her care for POTS.


    Subscribe to our blog

    Sign Up