When your child is suffering, you will do almost anything to make things better. For Beth Lovett, that meant saying yes to an IB-Stim device for her daughter’s chronic abdominal pain. The fact that it looked like a strange, high-tech hearing aid didn’t faze her.
“Sometimes the episodes were so bad that Madison would just lie in bed and roll around in pain,” Beth says. “She missed a lot of school and activities with friends. We were ready to try whatever Dr. Santucci recommended.”
The abdominal pain was just part of Madison’s complex medical history. At the age of six she was diagnosed with a connective tissue disorder called Ehlers-Danlos syndrome (EDS) hypermobility type. EDS affects everyone who has it differently. For Madison, symptoms have included frequent migraine headaches, chronic constipation, difficulty swallowing and joint pain. But Madison’s worst symptoms have come from two different conditions related to the EDS. One is abdominal migraine, a functional gastrointestinal disorder (FGID) that is caused by a chemical imbalance in the nerves of the digestive tract. The other is gastroparesis, a condition in which the stomach takes too long to empty its contents.
For Madison, the combination of abdominal migraine and gastroparesis meant intense abdominal pain, as well as vomiting, a bloated feeling and acid reflux. By age 12, she was in pain every day, and intense symptoms could last a few hours or periodically several days in a row. Eating often made her symptoms worse.
“We saw many specialists over the years, and Madison had countless tests. But none of the therapies we tried worked,” Beth says. “As a mom, I felt helpless and even hopeless, until we started seeing Dr. Santucci at Cincinnati Children’s.”
Neha Santucci, MD, MBBS, is a pediatric neurogastroenterologist with a special interest in treating FGIDs. In fact, she leads a new pain-related FGID clinic at Cincinnati Children’s.
After examining Madison and running additional tests, Dr. Santucci recommended the IB-Stim device, available at only a small number of pediatric hospitals in the United States. IB-Stim delivers neuromodulation therapy, which scientists think may work by decreasing the pain signals that are carried from the gastrointestinal tract nerves to the brain.
The IB-Stim device is taped behind the ear. It has four wires, each attached to electrodes that have a thin titanium needle. The physician inserts the electrodes near nerve bundles on the external ear surface at four marked sites, and the device delivers electrical pulses. Patients wear the disposable device for five consecutive days each week for four weeks.
Madison’s therapy began in August 2018, and within three weeks she began to notice she was experiencing less abdominal pain. By her three-month follow-up appointment, her pain episodes were even less intense and less frequent.
Dr. Santucci remembers the six-month follow-up appointment as being a major turning point for Madison. “Madison said she had no abdominal pain, and that her headaches and constipation had improved significantly,” Dr. Santucci said. “What really struck me is how happy and carefree she was—completely different from when I first met her. Now, more than a year post treatment, she continues to be pain free.”
Experts believe that neuromodulation has great potential to treat people with pain-related FGIDs, and may even benefit other pain disorders, such as migraines. Research to better understand this innovative therapy is booming, Dr. Santucci says. “Not every patient responds to neuromodulation as well as Madison has, but most function better and have a more normal quality of life after the therapy,” she explains. “It may also make other treatments work better, and if symptoms return, we can try neuromodulation again.”
Madison still deals with some day-to-day concerns related to EDS, but for the most part she is living a normal teenage life, Beth says. This school year, she joined the marching band—something Beth never thought she’d be able to do. “Before, if Madison could go to school, she’d come home after and just lie down,” Beth says. “I never thought she would be able to have the quality of life she has now.”
Cincinnati Children’s was one of the first pediatric hospitals to offer the IB-Stim device through efforts of Dr. El-Chammas in 2017. Dr. Santucci, Dr. El-Chammas and Dr. Kahleb Graham are currently doing IB-stim treatments. In addition, the FGID Program at Cincinnati Children’s, led by Dr. Santucci and Dr. Graham provides patients with an accurate diagnosis and treatment options, including a plan for long-term follow up. To learn more, contact email@example.com.