Pediatric feeding disorders are common. 1 of every 4 children are reported to have some sort of feeding disorder. A smaller number have symptoms severe enough to cause big problems or need specific treatment. The rate of feeding disorders is much higher in children with developmental disabilities. As many as 8 of every 10 children with a disability has a feeding disorder. Feeding Disorders - Developmental and Behavioral Pediatrics - Golisano Children's Hospital - University of Rochester Medical Center
"Best available research indicates that feeding problems are seen in 25 to 45 percent of the general population, in as high as 80 percent of children with developmental disabilities, and in 40 to 70 percent of children with chronic medical conditions. " (Society of Pediatric Psychology)
Know your team members: It is important to know who your team members are on the feeding team. They may include some of the following:
- Registered Dietician - assessment of dietary intake.
- Physician/Nurse Practitioner - diagnosis & referrals for special tests such as a barium swallow or endoscopic assessment and bloodwork to check nutrition status.
- Clinical Psychologist - behaviors related to or affecting feeding.
- Speech Pathologist - evaluation of chewing and swallowing and oral motor skills.
- Gastroenterologist - assess problems in the GI Tract (reflux, constipation/diarrhea/delayed emptying, etc) contributing to feeding issues.
- Allergist/Immunologist - evaluation and assessment of underlying food or environmental allergies that may be affecting feeding.
- Occupational Therapist / Physical Therapist - motor skills, posture, and sensory issues that are contributing to challenges at mealtimes.
While many of these are not available in the home environment or attend team meetings, the information gained from such providers is invaluable and can support the assessment and intervention process. Engage the parent in discussions about how other providers on her team view the existing issues and communicate with them via telephone or via written notes. I sometimes offer the parent a letter to take with her to the doctor when I have concerns, and I am not sure the parent will articulate well enough to engage the clinician to action.
Assessment - Problem based assessments are common in all disciplines. The insurance companies want to know what the problem is. Early Intervention wants a "strengths based" assessment. While these seem conflictual, it is because they are at either ends of the spectrum. It is important to know what is typical for age and to identify where the child is falling off the tracks, but........knowing where they are remaining on the tracks gives you a great place to begin. That means, find the problems and trace back to where you have some strengths.
Feeding disorder has been divided into six sub-types:
1. Feeding disorder of state regulation
- Anxiety
- ADHD
- Sensory differences (hypersensitivity to taste, smell, texture)
- Child temperament (slow to adapt, easily over-stimulated)
2. Feeding disorder of reciprocity (neglect)
- Food insecure environments lead to an Adverse Childhood Experience known as “Childhood Food Neglect.” The child’s physical and mental well-being is neglected as a “result of material deprivation that is part and parcel of family-of-origin poverty, the result of parental neglect whereby the basic parent is unwilling or unable to provide basic life necessities for the child, or a combination of both (3).” https://www.eatingdisorderhope.com/
3. Infantile anorexia
- The central problem for children with Infantile Anorexia is their lack of appetite (anorexia), which leads to disinterest in feeding and food refusal. Children with Infantile Anorexia hardly show any signs of hunger, they may eat only a few bites before they refuse to eat any more and eat just enough to take the edge off any hunger they experience. These children seem more interested in playing and interacting with their caregivers than eating. They will throw feeding utensils/food and frequently try to climb out of the highchair or leave the table to play. This results in a very intense and stressful parent-child conflict. Infantile Anorexia — Dr. Chatoor (doctorchatoor.com)
4. Sensory food aversion
Eating exposes us to a significant number of sensory inputs (visual appearance of food, smell, temperature, taste and texture). Eating is a demanding experience from a sensory perspective. Some children are over (or under) responsive to the sensory elements of food and eating. This can mean gagging at the sight or smell of certain foods. It can also be refusing to touch food, vomiting or spitting food out.
Sensory food aversion can occur for many reasons, but often it is the result of difficulty processing the sensory aspects of eating. Children with an aversion are often labeled as picky or selective eaters.
5. Feeding disorder associated with concurrent medical condition
There are so many medical reasons why a child may have difficulty with food intake. Here are just a few I have encountered over the years:
- Gastroesophageal reflux disease
- Gastrointestinal motility disorders
- Oral-motor dysfunction
- Palate defects
- Failure to thrive
- Prematurity
- Oral Motor Dysfunction (dysfunctional swallow, dysphagia, oral motor dysphagia)
- Esophagitis (EoE)
- Gastritis
- Duodenitis
- Food allergies
- Short Gut Syndrome
- Chronic health problems (ear infections, frequent respiratory infections, dental problems, seizures)
6. Post-traumatic feeding disorder
Post traumatic feeding or eating disorders are behaviors exhibited when an infant relates a painful or frightening experience with eating. This disorder is also known as choking phobia, swallowing phobia and functional dysphagia.
Use Strengths/ Preferences/ Interests while you are targeting skills for instruction: The guiding light of any intervention is the ability to gear your instruction to the strengths, preferences and interests of the child. This supports engagement and most of the time, if you let them take the lead you will find that sometimes they will let you be the leader so that you can explore new interests, activities, and expand creative play. Here is an example of how to put this to practice in a feeding environment:
Example: Goal is to expand the texture and tastes the child will accept during mealtimes due to limited food preferences but remaining at the table is difficult for this child and he always wants toys or the TV on at the table when eating. There are many opportunities here for instruction and guidance to the parent especially with "in seat behavior", but we need to make being at the table more appealing for the child.
These are some things to try:
-Bring a mirror to the table so the child can see himself (not to touch...to watch)
- Try to use utensils in play activities and begin to transition the child to having utensils at the table rather than toys
- Ensure the child is sitting in the "perfect place" at the royal table (sometimes what they can see or not see matters) and make sure the parent is one of those things they can see.
-When the child is highly anxious and has difficulty being without his familiar caregivers, they tend to leave the table to follow them. Encourage the parent to sit with the child and stay there throughout the meal. This will give the child staying power.
-Model how to engage with the child at a meal (there are so many things to talk about and explore at the table). If your talking is too much, be quiet (knowing when and when not to talk is important).
-Have the child help with prep or cooking or setting the table if they are able. There are many fun ways to engage a child in a cooking experience.
-Help the parent understand the importance of routine and show what a pre-and post-meal routine might look like (sensory readiness, handwashing etc.)
-Use a timer and educate the parent on how long is "long enough" for a child to be expected to sit.
-Try to find ways to incorporate the child's "fantasies" into the mealtime. (Dinosaur pancakes, car shaped vegetables, etc). I have even seen spoons that look like excavators.
Environment: Children eat constantly throughout the day and in a variety of environments and potentially with a variety of different caregivers.
1. When we consider the "environment" it means we are considering the physical environment (space, equipment, materials), the social environment (interactions with peers siblings and family members) and the temporal environment (sequence and length of routines and activities). Take time to identify what challenges exist in the environment including what you hear, smell, and see.
2. We should strive to support children/families in their natural environments whether it be home, daycare or out in the community since eating happens everywhere and with a variety of caregivers. How the child functions at mealtime can be very different between environments. Figure out where he eats best or what times of the day he eats best and work toward replicating this.
3. The child's physical environment also includes what/where the child is positioned and how this supports or interferes with the success of mealtimes. We should work with families to obtain adaptive equipment or make low tech positioning modifications to meet this need. This seems to be a difficult proposition in the daycare environment. Wanting children with sensory differences, motor and balance challenges, and small statures to sit in the same chairs at the same table as their peers is "their goal", but........it may not be good for the child. Education is critical and often accommodations necessary.
4. Assistive Technology may be necessary to support the child and interventionists may be called upon to recommend, trial and obtain devices needed to facilitate success. I personally like to try items I recommend to ensure it is a good fit for the child and family before asking the state or other funding source to purchase it.
Family: Families are the leaders of this intervention process and should be called upon to participate in the decision making for the child. The interventionist's role is to support them with achieving the goals they have for their child/family.
1. Keep your interventions individualized, flexible and responsive to the unique circumstances of the child/family. I have worked with families who eat in the living room every evening, this is THEIR routine. My intervention addressed how we could support the child with positioning in a seated position at the coffee table and arranged the adults in a way to help ensure more control over "in seat behavior" to ensure maximal consumption.
2. Allow caregivers to practice the interventions while you are present to build their capacity to support their child. Our goal is to enhance the capacity of the parent to meet the child's unique needs. If you try sidelying for bottle feeding and it works well for the infant, then the parents who will be feeding the child 6 feedings/7days per week needs to be comfortable with how to do it too. If a caregiver has difficulty with making this happen, you may need to go back to the drawing board to find another option or it will not benefit the child at all.
3. Build a relationship with the family that is respectful of their culture and beliefs and is mindful of their socio-economic circumstances. Careful about asking families to "buy" this or that. Parents really want to do all they can for their child. However, we can't make an already stressful situation even more stressful by asking them to spend money they don't have. I also have found over the years that different cultures use bottles longer than others and offer milk more liberally.
4. We need to be responsive to a family's changing circumstances and how that may impact mealtimes. These can include a caregiver illness, divorce/separation, challenging siblings and other social factors that change the dynamics of a family. I worked with a child who was cared for by a grandmother who passed away. The grandmother had lived with the family for over a year before her death. Grandma was the mealtime social partner, and the child didn't know what to do without this component of the meal. This may sound crazy, but we found videos of the grandmother with the child, and this was just what he needed to remain at the table to eat until we could slowly fade that way. It took time, but was a way to meaningfully address his loss.
5. Interventionists should strive to enhance the caregiver's knowledge and understanding of the challenges at mealtimes while supporting their capacity to problem solve. Often, I find myself pointing out the obvious (to me) but for caregivers without equal training and experience these are NOT OBVIOUS. When I help the family do a food log and we plot the proteins, carbs and fruits/veggies accepted they are often astonished by the fact that the child is only eating dry crunchy tan/white/beige foods. This is an excellent way to discuss sensory properties of food and how we can use food chaining to help gain new foods.
6. Help families learn to advocate for their child by knowing and understanding their rights. This seems to be most critical for our kiddos in daycare settings who need additional supports to nourish themselves for the 8 hours they spend in the center all day. Advocating for accommodations and understanding how profound it is to know if the child ate at meals and snacks is important to their growth and development. I can't imagine the trauma of being dropped off at a place every day and being hungry the entire day because there is nothing served that is a preferred food. There MUST be provisions put in place to support that child including allowing the parent to bring in preferred foods so that they are consuming something.
Instruction: This is the cornerstone of early intervention. It involves what we teach, when we teach and how we teach. Interventionists are asked to use the term "instructional practices" because it is the term predominant in literature and research.
1. We should always consider the learning styles of the child and family as we provide education. Simply ask the caregivers how they learn best. They know! I would surely say, I need a visual. For some, they need it all written down. Others do fine with watching you and trying it themselves.
2. Interventionists should strive to provide information embedded in natural learning opportunities where the child and caregivers are active participants.3. Embed instruction across routines (ex: pre-meal handwashing is the same as handwashing after a messy craft activity). 4. Utilize peers to support learning opportunities for children. 5. Each child and caregiver has a unique pace of learning. Be mindful of the needs of the level of support needed to build the family's capacity to meet the child's needs/goals. 6. When working with families who have dual languages, try to find information in their preferred language. Some websites have informational PDF's in multiple languages.