It’s been one step at a time for 17-year-old Farah Willenbrock. Last summer, the once avid ballet dancer could barely walk at times after falling ill. Her stomach pain and nausea caused her debilitating pain.
“It was a little bit scary. I didn't really know what was wrong with me,” Farah said.
Scott Willenbrock, Farah’s Dad, added, “Sometimes it goes from bad to intolerable. I mean there were times where she was just lying in bed, weeping in pain for hours, so you know that’s very hard to watch.”
Farah stopped eating and drinking due to the pain and was placed on a feeding tube. She visited a number of doctors and specialists in her hometown in Illinois and the surrounding area. Her dad spent countless hours researching her symptoms looking for experts who could help.
“I did start to question like, is this pain just in my head, am I making this up? So that was really scary period for me, being doubted so often,” Farah said.
A nurse from another hospital pointed Farah’s dad to Cincinnati Children’s where they met with Neha Santucci, MD, a neurogastroenterologist. She diagnosed Farah with two conditions: functional dyspepsia, a chronic disorder where the upper digestive tract shows symptoms of pain and nausea for months and irritable bowel syndrome, which impacts the intestine.
“We believe that it is chemical imbalances in the nerves lining the GI tract that give this kind of pain, and very much like a migraine, where you do CTS and MRIs and everything comes back normal but we all know how severe migraine pain is, now the GI tract has the same neurotransmitters that are in the brain,” said Dr. Santucci, MD.
Dr. Santucci recommended the IB-Stim device for treatment. IB-Stim delivers neuromodulation therapy, which studies show works 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 needle. Dr. Santucci inserted the electrodes near nerve bundles on the external ear surface at four marked sites, and the device delivered electrical pulses.
Farah wore the disposable device for five consecutive days each week for four weeks and it delivered positive results.
“The IB Stem was subtle,” said Scott. “You know it's on her ear, you don't see what it's doing, you don't know what it's doing, but what happened is that she started eating better."
For the next step in her treatment, Dr. Santucci then introduced Farah to Sara Williams, PhD with the FIRST Program, which stands for Functional Independence Restoration Program. An intensive, inpatient program for children with chronic pain.
“Our model in the first program that Farah came to do with us is putting function first which means every single day, no matter how you're feeling, if you're having a high pain day if you're having a medium pain day, you're going to do the things on your schedule because doing that and giving your body the practice of doing all those things is going to help undo that pain signaling that’s been so strong in keeping you out of your life,” said Dr. Williams, a psychologist at Cincinnati Children’s.
Every day, Farah took part in eight hours of scheduled structured treatment including physical and occupational therapy to meeting with a psychologist. We caught up with Farah on her last day of treatment where she was finally able to dance for the first time in months.
“So I've learned a lot of deep breathing relaxation techniques, I've learned about reframing, a lot, which has been really helpful for me. So instead of thinking, wow, I used to be able to do this, I can't do it anymore instead thinking of all the progress that I've made and what I’m looking forward to getting back to,” said Farah.