and direct feeding interventions.
Learn How We Effectively Treat Severe and Complex Feeding Issues
For more information on the process after reading this and to request an intake appointment: Please click link here to submit the Application/Inquiry
Why is it important to get proper help?
- Eating and drinking is vital and one of the most important things we do from birth. It impacts almost all other areas of a child’s development and life and thus should be top priority. Without proper treatment, substantial risks to health, well-being, and adaptive skills are faced (e.g., stunted growth, blindness, tube placement, not toilet trained, sleeping, talking).
Substantial risks are faced by children with paediatric feeding disorders who do not receive timely and effective treatment services. These disorders occur during critical developmental periods for brain and skill development. Paediatric feeding disorders can impact a child not only medically, but in most other critical areas of a child’s life and development, including toileting, toilet-training, sleep, learning, behaviour, and severe problem behaviours (e.g., self-injury, aggression, rumination, pica). Feeding disorders also have significant impact on social development, community and school and extracurricular participation, family functioning, and travel. The feeding disorder can be a barrier to getting and succeeding with treatment for these other issues until it is resolved; thus, treating the feeding disorder should be prioritised as it improves the other areas naturally and sets the child up for other treatments if not. Children with paediatric feeding disorders are at risk for dehydration, dental decay, tube placement, growth failure, vitamin and mineral deficiencies, immune system compromise, emergency room visits, hospitalisations, infections, blindness, constipation, and fatigue. They also may refuse medications, supplements, and tooth brushing. Developmental delays could impact ability to crawl, walk, and talk, leading to oral, motor, and sensory issues.
Pica (eating non-food items) is one of the most serious and life-threatening self-injurious behaviours, as just one instance can result in death. Serious risks include intestinal obstruction and perforation, choking, infection, poisoning, oral and dental health issues, irritable bowels, enlarged colon, constipation, surgery, parasites, toxicity, vomiting, lethargy, gagging, problem behaviour due to blocking (e.g., aggression, self-injury, disruption), and death.
Treatment for paediatric feeding disorders becomes increasingly difficult as a child gets older, and treatment options become limited. The effective intensive behaviour-analytic interdisciplinary hospital programs in the USA typically max out at 12 years of age. Thus, if a child is not actually consuming multiple foods from all 4 foods groups of protein, starch, vegetable, and fruit (moving towards age-appropriate texture and independence [self-feeding, drinking]) and drinking water and milk/formula from an open cup within a few weeks (or months at most), he or she needs to be referred for assessment and effective treatment, and the earlier/younger that occurs, the better. It is not always true that children will eat when hungry if starved, that they will grow out of it (and even if that were true it is still not fine to go through critical developmental years without adequate nutrition), that they are fine if their weight is fine, that they are not “ready” or able to eat (unless there is a medical safety/aspiration reason) or can’t eat because of a diagnosis, or that attempted treatment is progressing because they are playing with or kissing food but not actually eating it.
The approach taken is individualised, data-driven, intensive, and employs the only empirically supported treatments for paediatric feeding disorders with nearly 40 years of scientific research to demonstrate effectiveness. This treatment requires highly specialised training (years) and is not available elsewhere in Australia (available only in a handful of locations in the USA). Families would normally have to move for a 2-month hospital admission to access this treatment. (Please see Resources for references for reviews of evidence and links to caregiver friendly articles and patient stories from Kennedy Krieger – full text electronic copies are available upon request). Kennedy Krieger’s feeding program in Baltimore, Maryland, USA is the original model for treating children with severe complex and abnormal paediatric feeding disorders. Outcome data (available on their website http://www.kennedykrieger.org/patient-care/patient-care-programs/continuums/pediatric-feeding-disorders-continuum) demonstrate that children meet over 90% of individualised goals and caregivers report high levels of satisfaction. Anecdotally, children who had never ate by mouth had gastrostomy tubes removed and could now attend a regular daycare or school (versus a special one for tube care) and ate their first birthday cakes (even if they were 7 years old) or Thanksgiving dinners and participated in holiday traditions. Children ate for the first time on vacation with their families or at parties or at school with their friends, had enough energy to participate in sports, learned to chew and take bites independently despite being evaluated previously as not able to do so, went to camp overnight, and parents who had battled mealtimes for years were able to feed their child family dinner without getting the exact same takeout everyday prepared in a certain way. This is a lifechanging trajectory for the family and the child on multiple levels (e.g., medical, social, developmental, monetary).
This approach is healthy and safe in that it does not require extreme deprivation of tube nutrition or the use of preferred foods/drinks initially (i.e., starvation/hunger provocation). Throughout treatment, modifications are made promptly and continue until data indicate a treatment is effective and consumption occurs. Therefore, vital nutrition is not withheld or delayed during critical developmental periods for children due to extreme deprivation or lengthy (e.g., years, months) treatments that have been ineffective at increasing consumption. It also teaches skills needed for adaptive and appropriate independence in eating and drinking, and ensures that children eat a balanced, nutritional diet from all 4 food groups at the most age appropriate texture possible. It is applicable regardless of diagnosis or ability/skill level, and should be implemented as early as possible. This approach has a long history of providing successful treatment for children who have had received years of costly unsuccessful therapy, including intensive interdisciplinary hospitalisations, “desensitisation,” medications, supplements, hunger provocation/starvation, speech/occupational/psychological therapy, oral-motor and sensory therapies, and consultation with teams, dietitians, and other medical professionals. This treatment is tailored to each child by direct work with the child to find out what works and develop procedures, and then caregivers are helped and trained thoroughly on precise already proven procedures specifically for their child so that they can do it alone once the program is finished. This approach does NOT employ “forced-feeding,” restraint, or re-presentation of emesis (vomit), and it is not generic in that it is individualised specifically for each child’s particular feeding needs and issues via direct work with each child, as opposed to general advice for parents to try or cookbook approaches.
For parents/caregivers, please let me know if you would like to be connected to talk to other parents who have been through the process to hear about it from their perspective and ask questions.
Assessment can be completed either in home or via video conferencing from a distance. The family completes intake paperwork and provides video clips of the child eating and drinking. A physician has to complete an intake clearance form. A comprehensive evaluation will be conducted in coordination with the child’s team as needed (e.g., gastroenterologist, pediatrician, allergist, speech pathologist, other therapy providers) to evaluate medical, safety, and skill issues and if referrals and/or testing are needed. This includes record review, questionnaires (including a comprehensive physician’s screening form), interview, and direct observation of the child. The mealtime observation provides information about the context of the meal, caregiver feeding behaviour, child mealtime behaviour/skills, strategies/foods/leisure items/utensils/seating used in the meal, etc. This information can be further evaluated systematically using data-based, objective, individualised assessments and treatment evaluations. In addition, interdisciplinary coordination and consultation with the child’s current relevant providers will occur as needed throughout the process. The family participates by assisting with the setting of measurable individualised goals. Treatment services are mobile and can be provided in home worldwide, and are intensive (multiple consecutive days) depending on the child’s needs (severity of the problem) and goals. This allows for family schedule flexibility. Sessions will be conducted for full consecutive days and the child will have breaks throughout the day between sessions as well as a lunch break. In each session, detailed thorough realtime data are collected via laptop computer program (e.g., latency measures to show how long it takes to take/swallow bites, actual grams consumed, actual grams of emesis, percentage measures based on the number of bites/drinks taken independently, responses per minute to show how much inappropriate mealtime behaviour such as refusal/crying/gagging/spitting out bites occurred) and graphed. A trained data assistant is present through the program. All sessions are videoed and I can watch the videos with you upon request. Direct assessments may include direct preference assessments, descriptive analysis, functional analyses, antecedent assessments, texture assessments, etc. An individualised treatment is systematically evaluated using a data-based approach. Single-subject research designs are used to show experimental control (e.g., reversal, multiple baseline, alternating treatments, changing criterion) and a component analysis may be conducted to simplify the mealtime protocol for the family and remove unnecessary procedures. Targets may include increasing variety of foods, increasing volume in meals, increasing texture, teaching cup drinking, teaching chewing, increasing self-feeding, teaching scooping of bites, opening and closing on the spoon, etc. Treatment components are individualised and may include differential reinforcement, escape extinction components, chaining, shaping, prompting, physical guidance, fading, etc. Graphs are examined via visual inspection and descriptive statistics for differentiation, trends, stability, and level. Caregiver satisfaction and social treatment acceptability is objectively assessed via a questionnaire. Once a successful treatment has been developed, caregivers will be intensively trained with individualised support to implement it in a variety of natural settings; thus caregivers must be present during the majority of this intensive process. I can sign a letter for you to take off of work/school. Caregiver training includes meal observation, video review, written protocol review, role play where the caregiver feeds me, individualised fading into actually feeding the meal, coaching during meals, coaching via phone/Skype with me out of the room, coaching via video review of meals without us present, etc while monitoring integrity (doing the procedures correctly) data/graphs. Hours of treatment are faded as caregiver independence with the protocol increases and mealtime behaviour is stable. Close follow-up support as needed can also be provided to ensure ongoing progress and success. Other caregivers and school and daycare personnel can also be trained as appropriate. Treatment procedural integrity (doing the procedures correctly) is montiored via computerised realtime data collection. Generalisation to natural settings such as school, home, and community and family meals including siblings are targeted.
To make an inquiry/request an intake appointment and for more information on the process: Please click link here to submit the Application/Inquiry
Aside from the significant medical, social, developmental, and familial benefits of successful treatment for paediatric feeding disorders, the cost effectiveness of intensive treatment has been demonstated (Dempster et al, 2015, Piazza and Carroll-Hernandez, 2004, & Williams et al, 2007) in USD. Please see Resources for references (full text electronic copies are available upon request). Dempster and colleagues (2015) reported a cost of $56,946 for gastrostomy tube placement surgery, $24,127-$26,737 (5-10 years) for tube removal, and calculated average routine maintenance costs (e.g., pumps, bags, tubes, formula) over 5 years at $202,095 and 10 years at $376,424. Williams et al, 2007 calculated that yearly routine maintenance costs could reach $70,889. These figures do not include other variables such as complications, medical appointments, emergency room visits, hospitalisations, specialised daycare/school placements and nursing, etc. or the high costs of months and years of ineffective therapies and hospitalisations most children receive before obtaining evidence-based treatment. Cost savings for a 70% (which is low/conservative compared for the evidence) to 100% success rate for tube removal at 5 years is $94,635-$122,412 and at 10 years is $266,353-$294,131, and for tube prevention at 5 years is $172,681-$200,459 and at 10 years is $344,400-$372,177. In addition to gastrostomy tube costs, additional costs can be incurred for children with failure to thrive, including nutritional deficiencies, hospitalisations for dehydration or temporary tube placements (e.g., nasogastric supplementation), oral supplements and formulas, constipation, specialised placements for school/day-care, dental decay, blindness, etc.
To access this treatment would otherwise typically require families to move for example to Baltimore for a 2-month hospital admission at >$450 USD/hour (in excess of a couple hundred thousand dollars). Private and public health insurances in the USA provide coverage for this treatment*. These costs are still minimal (and cost-effective) in comparison to benefits and effectiveness of treatment and the costs of years without treatment or costs for months and years of non-empirically supported treatments the majority of children access. Although this may appear to be a high lump cost estimate, many children we see have exceeded this cost every year (e.g., over weekly appointments) over multiple years towards ineffective treatments with multiple providers and disciplines without being fixed. The goal of this treatment is for the family to be given what they need for the child to eat/drink with them and to eliminate the need for more services and costs (be “fixed”), with exception of kids who need more time to build their skills (e.g., chewing) or handle larger volumes. This short-term intensive treatment works and “fixes” the feeding issue as long as the family keeps it up (with possible exceptions e.g., acute stomach illness, mouth surgery, new feeder needs training, severe cases with further skill development/time needed with chewing, self-drinking, scooping, biting off, etc.). A couple week to month treatment program that quickly fixes the problem for life and eliminates service need and associated costs totally is value for money.
The cost of this treatment varies as intensity of services is individualised and depends on response to treatment. The total actual cost of services is based on actual hours delivered rather than the estimate. Caregiver training and fading of hours will begin as soon as possible depending on progress made and goals met. Many kids graduate early and cheaper than the estimate. Some kids take longer.
The success/effectiveness and cost-benefit of this already empirically established treatment are far greater than many expensive regularly funded/accepted medical treatments (e.g., cancer treatments, surgeries). Limits simply because of cost should not be placed on highly effective treatments (not medical) like this. The medical community does not recommend or approve ineffective treatments based on cheaper upfront costs or allow these treatments to delay effective treatments for patients or compromise their care and wellbeing (e.g., take this cheap herbal supplement first rather than an expensive, proven effective antibiotic; the drug that is known to fix this is expensive so let’s try surgery instead or half the recommended dose).
*Note: This is completely funded in the USA by most private insurance companies and Medicaid (and extremely more expensive). There’s a long history of successful appeals and overturned decisions from the past in the USA that has already established this as so. Please see Hagopian et al 2015 for references for judicial rulings, legislation, and insurance reform.
- National Disability Insurance Scheme (NDIS)
- Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), Helping Children with Autism (HCWA), Better Start
- Private Health Insurance
If you would like more financial information, please click the following link: Please click this link here to sign the Financial Agreement
Supervision for Behavior Analysts
Dr. Tessa Taylor, PhD, BCBA-D is a licensed Clinical Psychologist (Australia) and a Board Certified Behavior Analyst at the Doctoral Level. She provides supervision for aspiring behavior analysts and is a BACB Approved Supervisor. Contact Dr. Tessa Taylor to discuss supervision.