Like most families and cultures around the world, food plays a central role in Tamia Spitaletto’s family.
“Food is celebration, mourning and meditation,” said Tamia.
But food was not something Tamia’s daughter, Gabriella, seemed particularly drawn to. Tamia and her wife noticed that Gabriella was resistant to trying new foods even at a very young age.
“I was making two breakfasts, two lunches and two dinners for years,” said Tamia. “I would either feed Gabriella before going to a party or bring a can of soup over to friends’ houses and ask if I could use a can opener and a pan to heat it up. It was so awkward. We could never go to restaurants.”
Over the years, Gabriella’s limited diet began causing constipation issues, which then resulted in frequent urination due to her over-full bowel pressing on her bladder.
Gabriella was seeing a therapist to help her with sensory processing disorder, but when it came to feeding, her therapist didn’t feel Gabriella’s lack of wanting to eat was sensory related. When Gabriella was 8, her pediatrician referred her to the Children’s Wisconsin Feeding, Swallowing and Nutrition Program where she was diagnosed with and treated for a Pediatric Feeding Disorder (PFD).
A PFD is defined as impaired oral intake that is not age-appropriate and is associated with dysfunction in four primary areas or domains: medical, nutritional, feeding skill and/or psychosocial. If a child is affected by two or more domains for a period longer than three months, they are considered to have a PFD.
“Children with a PFD are more than just fussy babies or picky eaters,” said Mary Beth Feuling, MS, an advanced practice dietitian at Children’s Wisconsin. “This disorder can affect the child in a hundred different ways. We see everything from malnourished to overweight children. Some children have a feeding disorder because they have a chronic disease, and others have no underlying disease or anatomical dysfunction.”
PFDs have been tricky to diagnose due to the nature of symptoms and a broad spectrum of underlying causes. In addition, diagnosing a feeding disorder in the context of just one medical condition failed to address the complexity of PFDs.
In 2016, Mary Beth and her Children’s Wisconsin colleagues, Praveen Goday, MD, pediatric gastroenterologist and program director of the Feeding, Swallowing and Nutrition program, and Alan Silverman, PhD, pediatric psychologist, along with 18 other health care professionals from across the country representing the four domains began working to create a universally accepted definition of a PFD. These professionals sought a new definition that unified all related components of feeding disorders so providers could include all relevant disciplines in treatment planning.
The consensus definition was published in the January 2019 issue of Journal of Pediatric Gastroenterology and Nutrition.
“It’s normal for kids to go through phases of things they will and won’t eat,” said Mary Beth. “Our normal development is to pick and choose foods and it’s always very fluid. It’s hard to know the difference between ‘picky eating’ and a PFD. That’s one of the reasons we created this definition.”
According to Mary Beth, providers will start treating a PFD by addressing any medical dysfunction first and then move on to address the nutrition domain, followed by therapy to address behavior and skill. Even for providers, it can be a process of elimination to determine what is causing feeding difficulties.
“It’s a dance to determine what is on the list of things that could be interfering, but we know for sure that if the medical piece isn’t addressed first, we can’t make progress in any of the other domains,” said Mary Beth. “If you have a vomiting condition, no progress can be made by a dietitian or a therapist until the medical issue is addressed.”
Mary Beth and the same group of professionals who worked so hard for a universal definition took the process one step further in October 2020 when they succeeded in getting an official medical diagnosis code in the International Classification of Diseases (ICD-10) for PFDs. One of the greatest advantages of a diagnosis code is achieving standardized care for PFDs.
“Since there is such a wide spectrum of treatment options for PFDs, standardized care allows new providers to learn more quickly what it took years for more experienced providers to learn,” said Mary Beth. “We want to give patients the best, most evidence-based care possible.”
The ICD-10 code also improves access to care because insurance companies are more likely to cover procedures and appointments. In addition, it increases early identification of the disorder and helps with funding for research.
Depending on the age of the child, it can be difficult for parents to realize when their kids are having difficulty eating or drinking.
“Often parents don’t realize what’s happening because it’s such a gradual thing,” said Mary Beth. “But as the child gets more malnourished, they get further and further behind in their development and it turns into a pretty stressful situation.”
The feeding team at Children’s Wisconsin partnered with Feeding Matters to advocate and educate parents and caregivers of children struggling with age-appropriate feeding. One of their goals is to help parents and caregivers identify the disorder early on. Together, they developed a feeding questionnaire to help parents and caregivers know when it’s time to consult their pediatrician.
“Early detection of feeding disorders in children is crucial,” said Dr. Goday. “We are committed to equipping parents and pediatricians alike with the information they need to help families get the information and care they need as soon as they realize they have a problem.”
Gabriella’s care team at Children’s Wisconsin includes providers in all four domains to address constipation, nutritional deficiency, food selectivity and anxiety. Gabriella met with Mary Beth, a registered dietitian, to ensure she was getting proper nutrients, Vladimir Bjelic, a speech pathologist, to evaluate her chewing and swallowing, and Dr. Goday to monitor her constipation. Gabriella, now 10 years old, has also been working extensively with Meghan Wall, PhD, pediatric psychologist, to address her anxiety around food and expand the foods she is willing to eat.
Gabriella has been seeing Dr. Wall two to three times per month for more than two years. Tamia makes entire meals for Gabriella’s visits and must bring a new food every time, plus something to drink and Gabriella’s comfort food (fish crackers).
Dr. Wall takes Gabriella through a sequence to try foods she’s never eaten before. Gabriella will start out touching the new food with her hand, then she will touch it to her lip, then she will touch it with her tongue, next she will chew it and spit it out, and finally she might chew it and swallow it. Dr. Wall also gives Gabriella tips on how to physically and mentally eat the food.
Tamia says Dr. Wall is their hero.
“Our work with Dr. Wall has been life changing,” said Tamia. “It makes me cry because it’s been such a struggle. Before seeing Dr. Wall, we couldn’t even have certain foods on Gabriella’s plate and now she can take a new food, put it in her mouth and try it. She may not like it, but she tries it. Dr. Wall is the puzzle piece that completes us.”
Gabriella is now eating things her mom could only dream of her one day eating — broccoli, chicken breast, lasagna and asparagus. Tamia only has to make one meal for the family and Gabriella no longer is suffering from constipation. Even more importantly, Gabriella feels her life has become easier.
“I have more choices of food and I feel more comfortable going places,” said Gabriella. “When I had my first school lunch before the pandemic it was amazing. It changed my life very much. My body feels different now and I don’t get tummy aches anymore.”
Tamia says they still have a lot of work ahead of them, but it feels manageable. Plus, she now feels equipped to introduce new foods to Gabriella at home.
“Almost every single food takes 3-4 months to incorporate to the point where she’s eating it as normal and not rice-sized bites or gagging,” said Tamia. “And, just because baked chicken is okay doesn’t mean fried chicken or chicken on the bone is okay. Gabriella is eating peppers now, but even changing the color of the pepper is work.”
Dr. Wall believes Gabriella’s success is a reflection of her family’s hard work and dedication to improving Gabriella’s health and well-being.
“In feeding clinic, patients and their families are members of the feeding team, all working together to meet feeding goals,” said Dr. Wall. “Gabriella and her parents have been at the very center of their team, putting in hard work, overcoming challenges, and always maintaining a positive attitude. It has been a joy and a privilege to be a member of Gabriella’s team.”
Tamia describes how food has become a positive central focus for her family again.
“For the first time in 10 years, my kid is asking me to make things from scratch,” said Tamia. “When we try a new food, we call all the family members. The grandparents and aunts and uncles are all excited about eating special foods with Gabriella. They want to make memories with her. I couldn’t be more grateful to Children’s Wisconsin.”