Author: Jalenna Francois

Dear Friends of Feeding Matters,

At Feeding Matters, our work has always been to support families of children with pediatric feeding disorder (PFD) and the professionals who care for them. As part of this work, we support families coping with ARFID (avoidant/restrictive food intake disorder) and other feeding challenges. As PFD and ARFID gain more visibility, our role in guiding the field through the complexities of their overlap has become increasingly important.

The growing awareness of ARFID is a positive development, shedding light on the struggles faced by individuals who have often been mislabeled as simply “picky eaters.” However, as ARFID enters the public consciousness, it’s crucial to consider its relationship with PFD. Whenever ARFID is mentioned in social media or news outlets, I find myself asking: Is this a case of PFD evolving into ARFID? Is the conversation around ARFID missing the context of PFD? How can we present PFD as clearly and effectively as ARFID is being discussed? And most importantly, how do we guide our community through this complexity?

This is where our consensus efforts for ARFID and PFD come into play. We have two fields (the eating disorder and pediatric feeding fields) working with similar populations, yet often speaking in isolation. Unfortunately, families are caught in the middle. Much of my work involves addressing the overlap between these disorders and considering what provides the best outcomes for children.  Leading this effort is a responsibility I take very seriously.

The path to fully understanding and addressing the overlap between PFD and ARFID will be a long one. It will take years of research and sustained public education. For families, it’s essential that we honor their journey. No matter their diagnosis, we must honor their stories and the trauma they may have experienced. For professionals, our goal is to provide the tools, evidence, and education needed for earlier identification, assessment, and management of these disorders.

Your input and feedback are crucial to this process. We will continue to collaborate with experts, families, and the wider community. Together, we will lead this conversation with compassion, ensuring our approach remains trauma-informed and safe for all.

Thank you for being part of this vital effort,

Jaclyn Pederson, MHI
Feeding Matters CEO

Dear Friends of Feeding Matters,

At our recent board meeting, our Family Advisory Council (FAC) chair Amber described to board leadership how our council members were feeling. Our FAC is comprised of families of children with pediatric feeding disorder (PFD) who offer feedback, guidance, and support to ensure we are meeting the needs of our community. This council is integral to our work. But what Amber recounted was a feeling that I found to be highly relatable: One of treading water. One of a plateau. One of chronic fatigue.

Amber shared how so many of our families were doing everything they could to simply get through what life was throwing at them at the moment. And not all of it was feeding-related. As a group, the FAC decided what they needed was to be with each other. They scrapped the agenda and were able to support one another where they were and what they needed in that moment, letting go of the guilt that often shows up for us when we say no to what we are “supposed” to do.

Our families are faced with challenges in various forms: appealing for insurance, serving as the medical care coordinator, communicating with several specialists, tracking calories and medication, and implementing feeding strategies at every meal. Our healthcare professionals, advocates, leaders, and community members are doing what they can to show up too.

At times, all of that is too much – for parents, siblings, doctors, therapists, sometimes no one has the bandwidth.

A feeding journey is often long. It’s something we try share with parents the first time they reach out to us. We know it’s not what they want to hear. But if we can normalize that plateaus happen and accept the length of the journey, it may make the marathon a bit less stressful. I learned a big lesson in listening to Amber. I learned it’s important to simply recognize where you’re at, not beat yourself up, and give yourself permission to say no. Sometimes taking a breath is just what’s needed to be ok in the moment.

All the best,

Jaclyn Pederson, MHI
Feeding Matters CEO

The process of swallowing that most people take for granted is a remarkably intricate series of sensory and motor events. Developing effective treatments to support children with pediatric feeding disorder (PFD), who struggle with swallowing, requires understanding the specific physiological deficits in each child, rather than relying on generalized approaches.

Far from being a simple reflex, it involves coordinated, complex actions by muscles, nerves and sensory organs. When one step of this process is not automated, swallowing is difficult, uncomfortable and even dangerous.

The more researchers and clinicians understand the swallowing process, the better clinicians can support children with PFD.

Four Stages

Initially thought to be a simple reflex, swallowing is now understood to be a complex process involving both automatic and voluntary neural control. In early fetal development, swallowing is reflexive, but as infants grow, the process becomes a learned behavior and eventually a patterned response.

Swallowing can be divided into several stages, each involving distinct anatomical landmarks and physiological processes:

1. Pre-oral stage: This stage occurs before food or liquid enters your child’s mouth. When seeing and smelling food, your child makes a cognitive decision about whether or not to eat it. This simply means opening the mouth to accept the offering or reaching for food.
2. Oral stage: Once food enters the mouth, your child processes sensory inputs such as taste, texture and temperature. The child manipulates the food by chewing and mixing it with saliva, preparing to swallow. This stage is primarily controlled by the brain, allowing voluntary actions like chewing and spitting.
3. Pharyngeal stage: When the food reaches the back of the tongue, a reflex triggers the pharyngeal swallow. This stage is more automatic and involves quickly moving food through the throat into the esophagus while protecting the airway.
4. Esophageal stage: The food passes through the esophagus to the stomach. This stage involves automatic sensory and motor processes within the esophagus.

Understanding the swallow in pediatrics

Understanding swallowing in children presents unique challenges. While adult swallowing has been studied extensively, pediatric research is limited due to ethical and practical constraints. However, the fundamental principles are similar, with the process becoming more complex around five to six months of age when infants start consuming solid foods.

The first swallow movements in utero occur around 12 to 15 weeks of gestation. At this stage, we believe it’s completely reflexive. Once a baby is born and it becomes more complex and less automatic, part of the process becomes a learned, patterned response. This is likely around five or six months when infants start sitting and consuming solid food.

Diagnosis and treatment of swallowing disorders

Because swallowing is so complicated, there’s no cookie-cutter approach to treating a swallowing disorder. The first step to help a child with PFD is diagnosing the cause of the disorder. This evaluation ideally should involve a multidisciplinary team of experts, such as neurology, ENT and speech-language pathologists. If that’s not possible, the evaluating clinician should at least understand the anatomy, physiology and neurophysiology of swallowing.

Key diagnostic tools for evaluating swallowing include:

1. Cranial nerve assessment: Cranial nerves are the nerves that innervate the muscles and the sensory components of the head and neck, including during swallowing. An assessment of these nerves is done by a specialist who can evaluate the motor and sensory components of the head and neck. This goal is to gather detailed information about muscle function and sensory perception –– such as strength, range of motion, reflexes, abnormal movements and sensory components.
2. assessments: Endoscopy and video fluoroscopy are common techniques for assessing swallowing, though they have limitations, such as radiation exposure in children.
3. Manometry or electromyography: These tools measure pressure and muscle activity, offering insights into the strength and function of swallowing muscles.

Challenges and future goals for supporting children with swallowing disorders

Despite it’s complexity, there are few standardized treatments, especially for children. This stems from a limited understanding of the underlying mechanisms of swallowing disorders.

Without knowing the mechanism causing a swallowing disorder, clinicians and parents are left to compensate to overcome children’s challenges by thickening liquids and adjusting nipple sizes or flow rates. This helps feed the struggling infant, but it doesn’t treat the disorder.

By understanding the anatomy and physiology of swallowing, as well as the challenges in diagnosing and treating disorders, clinicians can better support children with PFD and their families.

When a child with pediatric feeding disorder (PFD) is also diagnosed with celiac disease, adjusting to a gluten-free diet can be even more challenging than usual. Keeping a child with PFD fed and nourished can be a full-time job. Seeing their restrictive diet shrink even more can be overwhelming.

Erin Feldman, RD, a dietitian for over 25 years at Cedars-Sinai, has supported countless families in their journey to transition to a gluten-free diet. “I’ve never had a patient come back and say they decided not to be gluten-free. All of our patients are compliant. We help them figure it out,” she says.

Understanding celiac disease

Celiac disease is an autoimmune disorder where ingesting gluten leads to damage in the lining of the small intestine. Gluten is found in wheat, barley and rye. Even traces of gluten prevent nutrient absorption for those with celiac disease. The disease is chronic, and the only treatment is a strict, lifelong gluten-free diet. This includes avoiding cross-contamination, such as double dipping a knife used for bread in a peanut butter jar.

The hardest part of maintaining a gluten-free diet can be avoiding cross-contamination and the many processed food products that contain traces of wheat.

Creating a gluten-free home

Transitioning to a gluten-free home involves more than just changing the food your child eats. Cross-contamination is a significant risk, so many families choose to make the whole house gluten-free when a child has celiac disease.

For some families, going gluten-free is cost-prohibitive or too disruptive for other family members. In this case, families need two of many products and even some appliances — like a gluten-free toaster.

Feldman recommends having separate storage for gluten-free items to prevent mix-ups.

Identify foods your child will eat
It can be a big challenge if your child with PFD and celiac disease eats a limited number of foods, and many of them contain gluten. Feldman recommends identifying foods your child will eat and then finding gluten-free substitutes that are as familiar as possible. “They’re not going to be able to adapt and eat completely different foods. We work with our families to make sure we give them ideas of things that are as close to what they’re used to as possible,” she says.

The good news is that the gluten-free diet fad in the U.S. means new gluten-free products are on the market every day.

Feldman recommends a few tips to help your child adapt:

1. Serve the new products with your child’s favorite dips, like ranch dressing or ketchup.
2. Involve your child in the food selection and preparation process.
3. Make finding substitute products a taste-testing game where you rate the options.

Checking food labels for gluten

In the U.S., nutrition labels list food allergens like soy and wheat, but they don’t list gluten. That makes learning to read labels to identify gluten-free products crucial. Many processed foods contain hidden gluten. “People are surprised there’s gluten in soy sauce or anti-caking agents in shredded cheese,” says Feldman.

Following are some not-so-obvious ingredients to watch out for:

• Salad dressings and marinades can contain soy sauce or malt vinegar
• Cream-based soups often contain flour as a thickener
• Processed meats often contain wheat as a filler and binding mechanism
• Seasoning mixes and spice blends can contain wheat flour as a filler or anti-caking agent
• Modified food starch
• Malt extract, malt flavoring and malt vinegar
• Licorice and similar candies contain wheat

Many hidden gluten byproducts in processed foods don’t exist in a home kitchen. The more you cook from whole ingredients, the easier it is to avoid gluten.

Eating out safely

Eating gluten-free doesn’t mean you have to give up on dining out, but it does require careful planning. There are even gluten-free restaurants in many metropolitan areas.

Some restaurants can accommodate gluten-free requests. Feldman recommends calling ahead during non-peak hours to discuss your needs with a manager or chef. “Ask about their menu and food preparation practices such as using the same oil for french fries and chicken nuggets. You’ll get a good sense when you start asking questions if it’s safe or not,” she says.

Once you’re in a restaurant or hotel, Feldman encourages parents to feel empowered to always ask rather than assume there’s nothing gluten-free. “If there’s nothing on the menu, ask if there’s something they can create from these ingredients,” she says.

Feldman also recommends starting by eating out for breakfast, since foods like eggs, fruit and yogurt are usually gluten-free.

Monitoring nutrient intake

Gluten-free diets can sometimes lack certain nutrients since they aren’t fortified with vitamins and minerals like bread products. Once your child adjusts to a gluten-free diet, you’ll want to be sure they are getting the micronutrients they need. Speak to your provider about adding a supplement if necessary.

Some important nutrients to monitor on a gluten-free diet include the following:

• Vitamin D
• Calcium
• Vitamin B12
• Folate
• Iron

If your child will eat it, consider incorporating naturally gluten-free nutrient-rich foods like leafy greens, nuts and fortified dairy or plant-based milk.

As any parent of a child with PFD knows, transitioning to a new diet is a significant adjustment. With the right approach and resources, families can manage it successfully. “This is a learning curve. You’re not going to be perfect right away. Give yourself grace and patience. With time and support, it becomes more manageable,” says Feldman.

The perspective on feeding therapy from a speech-language pathologist

When a child struggles with eating or eats differently than parents expect, it impacts the entire family. That’s because eating is about so much more than the variety and quantity of foods we consume. It’s about giving and receiving love, celebration, enjoyment, connection, learning, socialization, sensory experiences, fine motor skills and communication.

As clinicians who learn the technical aspects of eating, we sometimes view feeding through a medical lens. To better help families struggling with pediatric feeding disorder (PFD) though, we need to widen our perspective and consider a child’s eating in the context of their family and environment.

Of course, safety and nutrition are of primary importance. But to best serve families, we can’t evaluate and support feeding skills without also understanding how specific feeding challenges impact each family.

I recently worked with a client who was born prematurely at 24 weeks gestation. Prior to her birth, her mother spent four weeks in the hospital on bed rest. For this family, the stress and trauma related to their baby’s health began before she was even born.

After she was born, this little girl spent five months in the NICU and required surgeries, intubation, an NG tube and ultimately, a g-tube. The need for multiple medical interventions meant early experiences around feeding and bonding didn’t happen as expected for this family.

By the time I met them through Early Intervention (EI), feeding still felt very medicalized to her parents. Her parents adhered to a strict tube feeding schedule (as they were directed to do by her medical team) and desperately tried to find a formula that didn’t cause her to throw up after each feeding. There were few opportunities to learn her hunger cues, cuddle together while she ate or share love around mealtimes. Her parents felt powerless, confused and frustrated.

We began with conversations about what her family wanted their mealtimes to feel like. This helped them shift their lens to think about how to help their daughter feel comfortable and ready to learn. We talked about what she might enjoy. Of course, we continued to consider her complex medical needs, but together, we were also able to shift our focus to helping her feel safe, building trust between her and her parents, supporting her internal motivation to explore and learn and letting her explore at her own pace. Once she felt better, she became a very curious baby at mealtimes!

Her parents took time to learn that the goal of mealtime doesn’t have to be the specific number of ounces or calories. Instead, they began the journey to help their daughter discover what was right for her body. They were encouraged by small indicators of change, such as getting messy while exploring food and putting a spoon into her mouth independently.

Their focus became celebrating each learning experience.

Not every client I work with is so complex, but my approach to feeding therapy always remains the same: family-centered, responsive feeding.

Below are seven important tips for clinicians supporting children and families to keep in mind:

In their book Pre-Feeding Skills, Suzanne Evans Morris and Marsha Dunn Klein describe this caregiver-child interaction at mealtimes as a dance. Families move, interact, and learn in response to each other. Considering that infants eat 8-12 times per day and toddlers eat 5-8 times per day, this makes eating the activity that families spend the most time doing together.

Relationships matter in feeding therapy, and supporting parents’ and children’s communication around mealtimes is key to facilitating trust.

Understanding a child’s communication is a gamechanger in feeding therapy.
PFD can co-occur with over 300 different diagnoses. That means many children with PFD also experience speech, language and hearing challenges that can further complicate feeding. When a child has difficulty clearly communicating with their caregiver, that caregiver may misinterpret mealtime behavior. Behavior is communication. Let’s work with parents to better understand what their children are telling us about how they feel about their experience. Are they communicating that something is not working? Do they need us to make a modification in order to help them feel more comfortable and ready for learning? When we seek to understand a child’s communication, we can also support parents in knowing how to respond appropriately.

Eating means more than consuming calories.
Central to supporting families of children with PFD is the realization that eating is much more than the physical act of consuming food. Love, connection, socialization, internal motivation, communication, sensory experiences and skill development are all important parts of eating.

As clinicians, we can inadvertently add to the stress and anxiety parents feel when we focus solely on quantity and volume goals.

The truth is that success is not always measured by the number of calories consumed. Instead, we can celebrate a child feeling comfortable enough to explore a new food or a caregiver who helps a child participate in family mealtimes in the way that’s right for them.

Acknowledge that it’s not our job to get a child to eat.
Although we need to carefully monitor a child’s nutritional status with the help of a child’s medical team, focusing on “getting” them to eat shouldn’t be the goal of feeding therapy. Instead, it’s our job to collaborate with caregivers and support a child’s autonomy, internal motivation and ability to learn. We can offer opportunities and then let a child show us what works for them at that moment.

Make asking about feeding part of your evaluation routine.
It would be an incredible service to so many families if we regularly asked about mealtime routines even when we meet a family with other primary concerns related to communication or other diagnoses that impact development. Because we know how prevalent pediatric feeding disorder is, we can facilitate earlier access to feeding support in early intervention and beyond.

When in doubt, check it out.
It’s not unusual to hear from families that another provider told them their child will grow out of a feeding concern. Parents know their children best. If a parent feels there is a problem, then there’s an issue to address –– even if it’s minor. Let’s give parents access to information and resources when they need it most. We know that for the children who are struggling, ignoring the issue can have a negative impact on family routines, interactions, and ultimately family life as a whole.

Families do best with a team approach to PFD
Many caregivers worry about whether their child with PFD is eating what they need in order to grow. Some parents may overestimate their child’s needs and underestimate their child’s intake.When we collaborate with pediatricians, registered dietitians and other professionals, we can gather specific data that helps us understand whether a child is consuming what they need to grow and thrive. This information helps us make informed decisions and often helps lower stress for parents, ultimately helping them feel more comfortable letting their child learn at their own pace. We can also collaborate with other professionals to help us explore the impact of medical conditions on eating and the psychosocial factors associated with family feeding experiences.

Feeding success looks different for every child, but with the right support, we can empower parents to be their child’s best teacher by supporting emotional connection and individualized earning.

As a mom of two, I experienced firsthand the profound impact of pediatric feeding disorder (PFD) on a family. When I learned about pediatric feeding disorder and Feeding Matters, my oldest daughter was five. We’d struggled most of her life to feed her, and I’d been begging clinicians to take me seriously. Receiving a diagnosis of gastroparesis and finding a community of support gave us a path forward.

But the journey to get there was fraught with uncertainty and paved by social and family pressure that made me feel like my child’s inability to eat normally was my fault.

These challenges are especially difficult postpartum. A new baby is supposed to do two things: sleep and eat. When your baby doesn’t do either, the amount of stress you experience is alarming. That, combined with postpartum hormones and exhaustion, creates fertile ground for postpartum anxiety (PPA) and postpartum depression (PPD).

In my decades of working as a clinical psychologist with a specialty in primary care, I’ve worked with many women experiencing PPA and PPD. It’s no surprise because numerous studies show medical trauma can contribute to PPD.

The correlation between pediatric feeding disorder and postpartum depression

Most parents of newborns who struggle to eat have never heard of pediatric feeding disorder. Because the ICD-10 code is new, many clinicians don’t diagnose it either. Babies who aren’t gaining enough weight can be labeled as “failure to thrive,” a vague catch-all diagnosis. Even that diagnosis takes time. Meanwhile, new parents feel at fault for their child’s struggle.

Babies who don’t eat well often don’t sleep well either. For me, this led to a bout with postpartum anxiety, a condition that’s not as well known as PPD. PPA is excessive worrying after having a baby that takes over your thoughts. Some anxiety after becoming a new parent is normal. When it disrupts your ability to function, it’s time to get help. Studies show that between 11% and 21% of new moms get PPA, so know that it’s normal and can be treated.

Experiencing this myself as a new mom of a child with PFD changed the way I understood my clients. As I navigated through my professional career, it became increasingly clear how having a child who doesn’t eat normally can precipitate a mental health crisis in parents, particularly in the vulnerable postpartum period.

PPD is characterized by persistent sadness and exhaustion so profound that it interferes with daily functioning. Unlike the transient “baby blues,” PPD is a deeper, more enduring state that demands attention and care.

PPD and PPA most commonly occur within six weeks after childbirth in about 6.5% to 20% of women, but it can occur at any point in the baby’s first year. Unlike the more common “baby blues,” PPD has a longer duration and is crippling. In many cases, PPD is triggered by a real or perceived trauma during delivery or postpartum, such as a difficult labor, a baby in the neonatal intensive care unit (NICU) or difficulty feeding a new baby.

The relentless pursuit of a solution for PFD, coupled with sleepless nights and the constant worry about your child’s health, is a breeding ground for depression. The depth of this correlation became apparent during my time working closely with families in primary care and OB settings. Parents grappling with their child’s feeding issues often expressed feelings of failure, guilt and isolation — emotions that make PPD more likely.

Recognizing the signs of PPD in the context of PFD

There are two cognitive distortions that are common among parents of children with medical trauma.

1. Emotional reasoning: The more strongly you feel in emotion, the more it convinces you the thought is true. For example, the more anxious or sad you feel, the more you become convinced that everything is your fault.

2. I should: This is where you tell yourself you should be doing better, your baby should be eating, you should be happy or you shouldn’t be sad.

Both cognitive distortions are valid human emotions, so to make yourself feel bad for having these feelings is not fair. These emotions make sense when your body or your child’s body is experiencing trauma. Your brain is doing what it should do, which is saying this doesn’t feel good.

When these feelings become constant and debilitating, this might be PPA or PPD. Symptoms may include:

• Persistent sadness

• Loss of interest in previously enjoyed activities

• Feelings of worthlessness and overwhelm

• Excessive worry about your child’s well-being

• Heart palpitations

• Crying spells

• Loss of appetite

• Trouble sleeping

• Sudden mood changes

• Lack of interest in or thoughts of hurting your baby

Many new parents feel this way occasionally. Feeling this way persistently likely means you’re dealing with more than just the stress of parenting. This recognition is the first step toward seeking help.

Coping mechanisms for parents of children with PFD

Navigating PFD and PPD takes time and requires support from others –– including getting professional help or joining support groups. Finding a supportive community, whether online or in-person, can alleviate isolation.

For parents facing PPD and PFD, seeking professional help is a sign of strength, not weakness. Therapy can offer a space to process emotions and develop coping strategies, while support groups provide a sense of community and understanding.

When your partner or loved one is struggling, allowing a safe space to vent without offering solutions can be the most important way to be supportive. Your loved one might just need to vent and have you validate those feelings.

Experiencing postpartum depression while parenting a child with pediatric feeding disorder exponentially complicates an already difficult journey. Knowing that so many others have a similar experience brings a small measure of healing.

Seek support from a licensed therapist in your area or over telehealth, practice self-compassion and connect with others at Feeding Matters who understand your struggle. You are not alone, and with the right support, you and your family can face these challenges.