Comprehensive Study Guide on Pediatric Feeding Disorders (PFD)

Speaker Background and Professional Journey

• Melissa’s Professional Context: Melissa is a Speech-Language Pathologist (SLP) and the owner of Kids Therapy Spot. She specializes in pediatric feeding disorders (PFD) and infants.
• Early Career and Education: Melissa began her career in Early Intervention (EI), traveling across $9$ different counties during her first $7$ years. Her interest in SLP was sparked by a newspaper article about a therapist teaching a baby how to drink from a bottle.
• Clinical Supervision and Growth: She noted that her Clinical Fellowship (CF) supervisor was largely non-existent, seeing her only twice. This forced Melissa to self-educate, particularly when treating her first patient with a tracheostomy, which cemented her love for feeding disorders.
• Lactation Counseling: She recently obtained her CLC (Certified Lactation Counselor) credential because treating infants requires an understanding of both bottle-feeding and breastfeeding, the latter of which is used by the majority of mothers.
• Kids Therapy Spot: Founded in $2009$ with a Physical Therapist (PT) and Occupational Therapist (OT). It began as a small downtown clinic and has grown into a multi-disciplinary practice with $40$ employees across three disciplines.

Defining Pediatric Feeding Disorder (PFD)

• Definition: PFD is defined as impaired oral intake that is not age-appropriate and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction.
• Distinction from Picky Eating: PFD is not simply a child refusing vegetables. It becomes a disorder when it impacts medical status, leads to nutritional deficiencies (e.g., failure to gain weight), involves skill deficits (e.g., dysphagia/aspiration), or causes psychosocial dysfunction (e.g., inability to eat with the family).
• Psychosocial Implications: In severe cases, children may refuse to let parents eat the same food in the same room. Therapy might start with FaceTiming from separate rooms while eating the same meal to build tolerance for the family mealtime routine.
• Clinical Presentation (Internal and External):
  • Choking, gagging, or coughing while eating.
  • Vomiting.
  • Poor weight gain.
  • Fatigue during feeding.
  • Difficulty chewing or swallowing.

Prevalence and Statistics in Pediatrics

• PFD Frequency: Approximately $1$ in $37$ young children have a PFD.
• Comparative Statistics:
  • Cerebral Palsy (CP): $1$ in $323$ children.
  • Autism Spectrum Disorder (ASD): Previously cited as $1$ in $54$, but current data suggests it is now $1$ in $31$ children.
• Identification Trends: The increase in autism diagnoses is attributed to better awareness of the spectrum, identification of levels of autism, and the recognition of "masking" (shielding emotions) in adults and high-functioning individuals.
• Legislative Changes: Laws are passing in many states that will soon require school-based SLPs to treat PFD, a task previously reserved for clinical or hospital settings.

Medical Diagnoses and Comorbidities

• Prematurity: Often accompanied by vision/hearing problems, respiratory diseases, and GI issues due to an underdeveloped system. Traumatic births can lead to strokes or hydrocephaly.
• Neurological Deficits: Conditions like Cerebral Palsy or Hydrocephaly significantly impact feeding. Melissa emphasizes that a child with a "C-shaped" spine (scoliosis or poor posture) requires different treatment than a child with an upright posture.
• Gastrointestinal (GI) Diseases and Allergies:
  • Eosinophilic Esophagitis (EOE): Commonly found in children with autism; it requires a GI specialist to perform a scope for diagnosis.
  • The Brain-Gut Connection: If the gut is in pain, the brain-gut connection is severed. The brain may signal hunger, but the gut signals pain, leading the child to ignore hunger cues.
  • The Hunger Myth: The speaker debunks the myth that "a child will eat if they get hungry enough." If a child experiences pain during eating, they will choose to starve rather than eat.
• Syndromes: Advanced genetic testing has identified rare conditions, such as duplication of the $13\text{th}$ chromosome. Melissa notes that in the past, resources like the "genetic syndromes book" or "DOPWA" were limited, but now therapists must use online research to understand rare diagnoses.

Enteral Nutrition and Feeding Tubes

• The "Fed is Fed" Philosophy: All methods of feeding (breast, bottle, or tube) are valid. Feeding tubes provide life, nutrition, and decrease the stress of quantity, allowing therapists to focus on the quality of oral skills.
• Types of Tubes:
  • Nasogastric (NG) Tube: From nose to stomach.
  • Gastrostomy (G) Tube: Often called a "Mickey Button"; enters the stomach directly. These can leak, necessitating "button pads" to protect the skin from irritation.
  • Jejunostomy (J) Tube: Enters the small intestine (jejunum). Used for medically fragile children with "small bowel syndrome" where the stomach cannot process nutrition.
• Delivery Methods:
  • Gravity Feeding: Using a syringe to pour food directly into the tube.
  • Continuous Feeding: Using a machine for a slow drip over a specific time (e.g., $23$ hours a day). This can make oral feeding therapy difficult because the child's system always feels "full."

Evaluation and the "Investigator" Role

• Primary Duty: The SLP must find the "underlying why" behind feeding rejection. Treating without knowing the cause (e.g., GI pain) can traumatize the child and create a permanent negative association with food.
• Screening Questions: Doctors should ask families six specific questions related to meal duration and variety.
  • Meal Duration: Under $5$ minutes for a bottle is too fast (risk of poor suck-swallow-breathe pattern); over $30$ minutes is too long (fatigue).
  • Incline and Reflux Case Study: Melissa described a $17$-month-old refusing solids who only drank bottles while lying flat. The solution involved gradual inclining with pillows before introducing a high chair and spoon.
• Pacifier Use: Melissa advocates for removing pacifiers between $5$ to $6$ months. Prolonged use keeps the brain in a sleepy, self-soothed state (via oxytocin) that dampens the child's response to the environment and creates speech diction issues.

Utensils and Equipment in Feeding Therapy

• Accessibility and Cost: Therapists should prioritize items parents can afford. Examples include using the handle of a "Take and Toss" spoon for infants with small mouths rather than expensive specialized spoons.
• Specialized Cups:
  • Sippy Cups: Generally discouraged; they are for parental convenience and encourage a "lazy," bottle-like suck.
  • Honey Bear Cup: Popular but expensive ($9$ dollars) and can have sharp edges after the lid is removed.
  • First Years Squeeze and Sip: A preferred, cheaper alternative to the Honey Bear for teaching straw drinking.
  • Reflow Cup: An open cup with an insert that controls fluid flow to prevent dumping too much liquid at once.
  • Nosy Cup: Features a cutout for the nose so the child does not have to tilt their head back.
• Spoons:
  • Maroon Spoons: Designed to decrease "tonic bites" (neurological jaw clenching).
  • Handle Usage: Using the thin handle of a plastic spoon can be better for thin oral presentations in infants than a wide bowl.

Treatment Philosophies and Ethics

• Neurodiversity Affirming Care: The therapist must meet the child where they are. This involves "bringing food to play" rather than "play to food." If a child loves trains, the therapist should place food on the train.
• The SOS Approach (Sequential Oral Sensory): Developed by Dr. Kay Toomey. It involves a hierarchy of interaction: Visually tolerating -> Interacting with tools -> Smelling -> Touching -> Tasting -> Eating.
• Language Choices: Avoid using words like "eat," "bite," "try," or "take a bite." These words often have negative connotations for children with PFD. Instead, use exploring language.
• ABA (Applied Behavior Analysis) Concerns: Melissa expressed concern about ABA feeding programs that use "bubbles and iPads" to reward bites without giving the child the option to say "no."
  • Case Example: A child with EOE and autism was taking $50$ bites in an ABA setting but stopped eating at home. Melissa argued this was "behavior modification" rather than "normalized feeding" because it ignored the child's potential internal pain (EOE) and lacked home carryover.

Parent Education and Support

• Expectation Setting: PFD treatment takes time. If a problem took $3$ years to develop, it won't be fixed in a week.
• Parent Involvement: Parents must bring food from home to sessions to ensure the child associates the food with their own environment rather than just the clinic.
• Emotional Support: Parents of medically complex children often have "witnessed their child nearly die" in the NICU. Validation and empathy are as important as the clinical treatment of the child.

Questions & Discussion

• Audience Question: The conversation touched on children who are still babysat and consistently use pacifiers.
• Response: Melissa reiterated that pacifier use leads to teeth alignment issues and sound production deficits. She advised "stealing the pacifiers" during the day first, then naps, then nighttime, eventually leaving them exclusively in the crib until they are discontinued entirely.