All of us have natural preferences when it comes to taste. And when babies, toddlers and children are exploring the world of food, it’s common for some fussiness, food refusal, and a healthy dose of ‘I don’t liiiiiike it’ at mealtimes.
‘Extreme’ fussy eating, however, goes beyond a regular level of preference or choosiness. ‘Extreme’ fussy eating is a collective term used to signify impaired oral intake that is not age-appropriate. ‘Extreme’ fussy eating is also known as Paediatric Feeding Disorder (PFD), and is associated with medical, nutritional, feeding skills, and/or psychosocial dysfunction. Infants and children with PFD can struggle with every mouthful of food or drink, requiring round-the-clock coordinated care.
Think about a newborn baby’s journey of learning to feed:
It is the single most complex and physically demanding task an infant will complete for the first few weeks, and even months, of life. (FeedingMatters.org).
Feeding is an instinct, and yet it is such an incredibly complex process. Organs, muscles and nerves work together as the baby swallows and processes milk through the digestive system- and if part of this process breaks down or does not correctly function, it can result in significant problems for infants eating and drinking, which can continue into childhood.
Katja Rowell and Jenny McGlothlin’s Helping Your Child with Extreme Picky Eating, is a must-read for parents, caregivers, and professionals caring for children with PFD. The authors reframe how worried parents view their child’s ‘extreme’ fussy eating and provide actionable steps that families can apply to make a difference.
Most parents or caregivers imagine they will experience a ‘normal’ journey with food, drink and family meals around the table- after all, eating is about so much more than nutrition’. If your baby or child then does not feed or is a selective eater, it can be a massive shock and can present a whole array of complicated physical and mental health issues.
If your child refuses food or only eats a limited range of food, you could feel beyond exhausted and debilitated from the relentless task of finding something they will actually eat- or from getting your child to eat anything at all.
You might constantly worry about their health and development on a limited diet. You also might experience feelings of overwhelm or guilt that this is somehow your fault.
For families going through a PFD or ‘extreme’ fussy eating with their child, it can be a lonely and terrifying time. It can cause overwhelming anxiety for the whole family which is all-consuming. Every mealtime can be a battle that lasts hours. Every bite can feel like an epic struggle, and social eating is nothing more than a far-off dream. There is also a very real fear of down the path of tube feeding- and if so, will they ever be able to move on from it.
At Joyfull Mealtimes, we know firsthand the challenges families face when dealing with ‘extreme’ fussy eating. We get how absolutely stressful and relentless it can be. And as a speech pathologist and feeding therapist, I’ve seenfirsthand the impact of ‘extreme’ fussy eating on families and their mealtimes. I have witnessed the isolation, anxiety, and helplessness that parents experience with ‘extreme’ fussy eating.
We also know that families facing PFD can often feel misunderstood. PFD is not merely a ‘phase’ or picky eating. Just like Katja and Jenny in Helping Your Child with Extreme Picky Eating, we believe every child deserves a positive relationship with food whether that be via mouth or tummy! We’re here to support you on that journey. One way we do that is through our products which we designed with empathy and understanding with feeding differences in mind.
We’re also passionate about providing education to support you on your PFD journey, and we are right alongside you in advocating for you and your child’s feeding differences.
Do reach out to your local healthcare professionals, who can offer guidance and even a referral to a specialist. Also familiarise yourself with Feeding Matters, a fantastic site full of information and support run by professionals dedicated to understanding and treating feeding challenges. We also recommend The Chicago Feeding Group who offer education and support for families with PFD around the world.
If you’re caring for a child with PFD, it can be easy to forget about your own needs. It is vital that you take care of yourself so that you don’t burn out. This can look like creating a support network with friends and family and making a self-care plan. Feeding Matters has some great tips on how to do this sustainably and also offers a peer-support program.
Everyone’s experience with PFD is different, but please remember you’re not alone and that there’s hope for brighter and more joyful meal times ahead. We hear you, we see you, and we are here for you.
Here at Joyfull Mealtimes, we proudly support the Call it PFD: Feed the Cause campaign as part of PFD Awareness Month. Throughout May, we’ll be donating a portion of every sale from our zesty ‘juicy orange’ collection and our JoyFull PLAYmat and Guidebooks to Feeding Matters in order to champion PFD awareness. (We chose the bright citrus orange colour of our Joyfull soft silicone suction dishes and plates to match the eye-catching signature shade of Feeding Matters). Make mealtime a breeze with our range of baby bowls and plates, and stand in solidarity with children and families with PFD today.