In Washington state, every child supported by early intervention (EI) for pediatric feeding disorder (PFD) is treated by a team that includes a nurse, dietitian and a speech and language pathologist (SLP) or an occupational therapist (OT). The clinicians work together to coordinate care and discuss each child’s needs. It’s a model of care that works –– but is also extremely rare.

Many states are moving in the opposite direction for EI –– providing children ages 0-3 with services from a single provider. This may be a physical therapist (PT), OT or an SLP. That clinician is expected to cover every area of the child’s developmental therapy. Even with the best intentions, clinicians will fall short of providing the comprehensive care required for PFD.

Outside of feeding clinics and children’s hospitals, many children with PFD are treated by a patchwork of clinicians who don’t easily coordinate care. Those who seek a spot in a feeding clinic face long waiting lists and typically experience severe symptoms of PFD.

Finding support for four domains of PFD

Pediatric feeding disorder affects four domains of feeding:

1. Feeding skill: Actual feeding skills, such as chewing and swallowing and managing the sensory aspects of eating
2. Medical: The body’s physical ability to digest food
3. Psychosocial: Learned ability to eat without distress
4. Nutrition: Willingness to eat a variety of foods with high nutritional value

Feeding Matters’ Coordinated Care Model examines the complexities of PFD through these four key domains that significantly impact a child’s lifelong well-being. Because PFD is so multidimensional, children need support to cover each domain. This requires a multi-disciplinary care team.

PFD can be well-regulated and treated through collaborative care and the proper support system. But for many parents, the job of cobbling together a PFD care team falls upon them.

Designing the all-star PFD care team

Symptoms of PFD vary for every child. Some common ones include a lack of interest or refusal at mealtimes, extreme picky eating and slow weight gain. If this sounds familiar, know that it’s not okay if mealtimes are a constant struggle. Unfortunately, some providers may discount these behaviors. A good rule when working with any clinician is that if you are worried, this means there’s a problem.

If you are building a care team for your child with pediatric feeding disorder, seek support from clinicians who can cover the four domains of feeding. Consider finding support from pediatric clinicians who work on telehealth if you live in an area with limited options.

Medical domain
This provider has expertise in your child’s overall medical health, such as a pediatrician, nurse practitioner or physician assistant. Their job is to identify when feeding needs additional assessment. If your child shows signs of PFD, you’ll need a provider who understands the disorder and the four domains that make up the coordinated care model.

Feeding skill domain
An OT or SLP with expertise in teaching the skill of feeding is an important member of your PFD care team. They’ll focus on the development and coordination of the sensory and movement skills that eating requires.

There’s overlap in the feeding skills and OT and an SLP can support, so be sure to describe your child’s challenges with the clinician. Ideally, you can work with both as they each bring expertise. Look for an OT and/or SLP with expertise in sensory and oral motor skills.

Psychosocial domain
Mental health providers, such as a psychologist or a licensed social worker, can help assess and treat the learned avoidance behaviors typically seen with a pediatric feeding disorder. For the child, this means managing mealtime behaviors and learned responses. This also includes modifying caregivers’ responses to the child’s behavior to promote a positive and successful feeding interaction.

Nutrition domain
It’s important to distinguish a registered dietitian (RD) from a nutritionist. In most states, individuals call themselves a nutritionist with no formal education or medical licensure association. Look for an RD with pediatric experience. Many RDs work over telehealth.

Finally and most importantly, you, as the parent, are a key member of the multidisciplinary team. You know your child best. It’s important you feel the team is listening to you and not just talking at you.

Tips for coordinating your child’s care

Ideally, your child’s care team will communicate on their own. When this doesn’t happen, serving as a middleman for provider communication is challenging. Ask your child’s clinicians to follow up with one another rather than passing messages and forms through you.

Tell the practitioner that you would really appreciate it if they would contact the other clinician. When your child is able to go to a multi-disciplinary team under one roof, that’s how they would function. Even when that’s not the case, you can still set that as the expectation for your child’s care team.

Most importantly, trust your gut. Many people are raised to think physicians are going to direct care. This is often true, but if you feel a provider is missing something or you want a second opinion, you are your child’s advocate.

If you think feeding is a problem, it’s a problem.

To find a licensed professional in your area, visit the Feeding Matters Provider Directory.

Dr. Erin Ross is a practicing SLP and the owner of Feeding Fundamentals, an organization that provides evidence-based professional training to advance the practice of infant feeding. She is a long-time member of the Feeding Matters Founding Medical Professional Council.