Innovative Botox Therapy Allows Franny to Thrive Independently After Difficult Years of Gastroparesis
In elementary school, an endoscopy revealed that Franny had eosinophilic esophagitis (EoE) – a chronic allergic disease of the esophagus (the tube leading from the mouth to the stomach), after she was experiencing reflux and difficulty and pain when swallowing. From an early age, she felt the challenges that accompany a disruptive chronic disease. Whether it was anxiety around social gatherings that centered on food or having to miss them entirely, Franny learned that she would need to prioritize her health in ways that, at times, meant compromising time spent with others. Unfortunately, this would not be the only phase in Franny’s life that caused some major interruptions.
Toward the end of high school, Franny began experiencing new symptoms that were not familiar to her in her EoE journey. Most notably, it became increasingly difficult to keep food and beverages down, and when she would try, she would get stomach pain, nausea and vomiting. She was suffering from gastroparesis, or paralysis of the stomach, and as such, her nutrition intake dropped significantly. She sought much-needed help from Lurie Children’s Gastroenterology, Hepatology & Nutrition Physician Dr. Peter Osgood.
The first intervention Dr. Osgood introduced was a feeding tube for Franny, to ensure she started receiving the proper nutrients her body had been deprived of due to her symptoms.
“The feeding tube did help at first because I had a nasojejunal (NJ) tube that went all the way to my jejunum (a part of the small intestine) and held my pyloric valve open,” Franny said. “We figured it was an issue with my pyloric valve because I was able to handle more solid foods when I had the feeding tube.”
While the feeding tube initially prompted some progress in Franny’s case, it was a solution that required constant follow-up and return visits to Lurie Children’s to maintain, which was difficult for an 18-year-old girl about to head off to college.
“I was homebound my senior year of high school, I missed half of my first semester of college because I was home so much getting replacement tubes every six weeks, “Franny said. “I wasn’t involved in school at the time, I never got to meet my roommate. It was crazy.”
And eventually, Franny’s symptoms outgrew what the feeding tubes could provide. The pain, nausea and vomiting became more severe, as did her ability to eat normally, and eventually eat anything at all.
“Whether it was a single chip or a full meal, it was coming back up,” she said. “Nothing was staying down.”
It was around this time that Dr. Osgood proposed another form a treatment – one that was newer to the pediatric world and leveraged an unsuspecting element: Botox injections.
“Botulinum toxin A (or Botox®) is an injectable medication perhaps best known for its use in cosmetic procedures,” said Dr. Osgood. “The toxin binds receptors at the ends of nerves to inhibit the action of the acetylcholine neurotransmitter. In so doing, this allows muscle to relax. While Botox has been used to treat wrinkles, to tight muscles, to migraines, its use in the gastrointestinal tract has been limited. I determined that Franny might be an excellent candidate to utilize Botox in the pylorus muscle to help her pylorus relax and to offer her some symptomatic relief.”
In 2021, Franny received her first set of injections, and the impact they’ve had on her day-to-day is remarkable. She understood from the get-go that the effects of the injections would eventually wear off and she’d need to see Dr. Osgood again for more, but the possibility of extended relief from her symptoms was exciting. Since her first procedure, Franny’s received two additional rounds of injections, each lasting six months to one year – a far less disruptive cadence for this sophomore at Illinois State University.
“It’s awesome to be able to be out here and not have to go back every six weeks or couple of months, but if I needed to, I know it’s available,” Franny said.
Aside from the time commitment, Botox therapy has improved Franny’s entire quality of life.
“I’m able to be fully independent at school,” she said. “I can go to my classes on my own, and I can go out with friends and not worry about making accommodations for myself or having to advocate for what I need. I’m fully capable of being by myself, which is something that we never thought I’d be able to do.”
Prior to the injections, Franny went under general anesthesia 20 times over the course of a year and a half for feeding tube insertion. “Other than a routine endoscopy at the beginning of this year, I have had nothing since starting the injections – no anesthesia, no feeding tubes, and my medications have changed so I’m not having to treat myself as much throughout the day either,” she said.
Franny also juggles other diagnoses that Lurie Children’s helps her manage, including Postural Orthostatic Tachycardia Syndrome (POTS), meaning a flare-up in one area can cause complex side effects that she does need a little extra help with. Fortunately, her service dog Auggie is exactly the companion she needs in those moments. He supports her in everything from helping her walk to retrieving medications and helping pick things up off the ground.
While Franny’s health journey has been lifelong and unpredictable, she remains grateful to her care teams at Lurie Children’s for being another support system that she knows she can count on to be in her corner. They’ve provided her the opportunity to thrive today as a typical college student ready to take on anything that comes her way.
“I am so thankful for Dr. Osgood’s advocacy,” she said. “I have so many things going on and for him to be able to look at the whole picture and not just his specialty is super helpful.”
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