In the United States, 1 in 37 children is affected by a feeding disorder. Though it’s not as well-known as other conditions, pediatric feeding disorder (PFD) has just as much of an impact.
One Phoenix-based organization aims to raise awareness about this invisible illness, giving parents and pediatricians the tools they need to diagnose and treat PFD. Feeding Matters is the first organization in the world that serves kids and their families with feeding disorders, and it’s leading the way in compelling the medical community, educational institutions and government entities to take PFD as seriously as other diagnoses. Because of this research and outreach, Governor Doug Ducey announced that December will be Pediatric Feeding Disorder Awareness Month, and PFD will have its own diagnostic code in an upcoming edition of the ICD-10 manual.
PFD is marked by a child avoiding or limiting what or how much he or she eats. For children with PFD, every bite of food can be painful or scary, leading to nutritional and developmental issues.
To continue to spread awareness, we sat down with Feeding Matters CEO Jaclyn Pederson to chat more about PFD, who it can affect and how you can help.
Start by telling me about yourself and your role with Feeding Matters.
I came to the Feeding Matters team back in 2013 as a volunteer program coordinator and it was just after I had finished my master’s in health care innovation. Between nonprofit management and health care innovation, it just seemed like such a nice fit to be at Feeding Matters. I didn’t have a personal connection, but I think once you become aware of what the mission of Feeding Matters is, you start to see it everywhere. I noticed when I had family members who had some difficulty with feeding and I just fell in love with our mission. I just adore this organization and I’ve invested my whole heart into it and I think we can do amazing things.
Tell me about the mission of Feeding Matters and what it does to raise awareness about pediatric feeding disorder?
Feeding Matters’ mission is to further advances in pediatric feeding disorder by accelerating identification, igniting research and promoting collaborative care for children and families. We’re trying to create a world in which children with PFD thrive. Oftentimes, when children have a pediatric feeding disorder, every bite of food is painful, scary or just impossible to swallow and it causes so much pain and anxiety and it affects the whole family. With our mission, we are really looking at it from multiple perspectives. We’re looking at it from an education perspective in that health care professionals don’t really get the education that they need about this, so PFD goes undiagnosed and underserved and it’s sometimes difficult to find the right person to treat a pediatric feeding disorder. We really try to provide that education to help health care professionals and really invest in the research that needs to advance the field. Most importantly, we support our families and raise awareness about this issue so that our families aren’t feeling like they’re alone or without answers.
What are the different facets or symptoms of a feeding disorder? Why is it so important to spread this awareness about the disorder?
PFD looks and acts many different ways for children. If something feels off or mealtimes are stressful, then we need to look a little further and we need to dig a little deeper. Feeding Matters has a tool called our Infant and Child Feeding Questionnaire that helps identify red flags for PFD. That in and of itself is important to spread awareness about. We gather as families to eat meals and if that’s stressful or painful and the child is doing everything they can to communicate that it’s painful, meals become stressful and the whole family unit is affected. It’s important to spread awareness about this because it goes undiagnosed, it’s underserved, there is a little bit of misinformation. There are so many myths out there about what a difficult mealtime might look like. For the longest time, pediatric feeding disorder was really looked at as a symptom of a bigger problem and Feeding Matters has really led the charge to say, “No pediatric feeding disorder is a standalone condition and it deserves to be looked at as such.” We like to tell people that we’re where autism was around 40 years ago. Back then, people didn’t know what autism looked like, parents were blamed, and we’re seeing that with families now. Families feel like it’s their fault when their child is struggling with feeding. It’s not. It’s just a really complicated issue that doesn’t get the credit that it deserves.
Who does it affect? Is it more common in younger children?
It actually impacts more children than you might think. We did a new nationwide study and it showed that more than 1 in 37 children under the age of five annually receive a diagnosis or currently have pediatric feeding disorder. PFD is more prevalent than well-known childhood conditions such as cerebral palsy and autism. From an age perspective, we really advocate for early identification. If it’s labeled as a behavioral problem or well-meaning people think that this is just a picky eater, then unfortunately, that goes on for a longer time and it’s not unknown for us to see children in the 10-13 age group, and there are some that make it into adulthood. We’re really doing everything we can to make sure we spread awareness so that early identification can happen. It’s just so important to the long-term development, not only from your physiological development, but also for your mental health, too.
Let’s talk more about how it can impact other areas besides from just a nutritional perspective – brain development, mental health etc.
We really think, and we know from research, that good nutrition is crucial. It is the foundation for all growth and development. That is hugely important in the first three years of life. Especially as children are in those first few years of life, getting the right nutrition and making sure they’re developing in a way that they are able to grow, learn and thrive is so important. It can be a really long journey for some families.
December is PFD Awareness Month. That being said, what is one thing you want people to know about feeding disorders?
I think what’s happening is it becomes really hard and families become very isolated, so they may not be sharing that there is a challenge, or they may be receiving some well-meaning, but unfortunate advice that they might be a picky eater, so it becomes a challenge. I think the biggest thing in raising awareness is you probably know someone who has a child with PFD and they might not be able to share that because there’s just so much guilt that families feel, even though it’s not their fault. If you know a family who is struggling or if you yourself are having mealtimes that are really stressful, please reach out to us and take our questionnaire to identify those red flags because we’re here to help.
What’s your biggest piece of advice for families navigating a feeding disorder?
You’re not alone, that’s the biggest thing. This is a long journey for families and if you’re concerned or you think that there might be an issue, it’s worth looking into it. Listen to your gut.
How can people help or get involved with Feeding Matters?
This is the piece that we really need, is that action step. We’ve got three steps, essentially: Follow us on Facebook and Instagram. The second step would be to share that information and spread the word. You never know who’s on your timeline that may need the chance to reach out get some help. Thirdly, if you can, give. We are a 501(c)(3) nonprofit and your donation goes to creating a world in which children with PFD thrive.