Success Stories

Children had previously received up to 11 years of prior failed treatment attempts by up to 12 different disciplines/treatment types.

These are only cases from Australia and only selected feeding relevant diagnoses and conditions are listed for each case. In the hospital at Johns Hopkins/Kennedy Krieger, many diverse, severe, and complex feeding cases and issues were treated. In Australia, we have helped children with autism, developmental delay, intellectual disability, chromosomal abnormalities, coeliac disease, William’s syndrome, prematurity, constipation, anemia, nasogastric and gastrostomy tubes, failure to thrive, reflux, and dyspraxia, as well as children with typical development.

• 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. 

 A 9-year-old boy with autism and history of NG tube at birth ate no fruits, vegetables, or meat and did not drink water, and was dependent on laxatives and formula. He had years of attempted treatments with multiple disciplines and therapists, including medications and participation in an intensive research study at a hospital. Within a few days, he was consuming 100% of any food presented to him (over 50 foods from all 4 food groups) at regular texture and drinking water from an open cup with high independence. Parents were trained and reported high acceptability of the treatment (4.89/5) and satisfaction (4.87/5). He met 100% of measurable goals set by the family in less than 2 weeks with continued success reported for over a year.

An 11-year-old male with autism (level 3), developmental delay, multiple (18) abnormalities and nutritional deficiencies via bloodwork, formula/supplement dependence, height deficiency (stunted growth), overweight, and medication/supplement and toothbrushing refusal and a history of constipation ate zero foods from the food groups and did not drink water or milk. He only ate one brand specific snack chip and drank one type of juice. If either of these 2 items were unavailable or if there was any change to his setup for eating/drinking, he was at significant risk for dehydration, hospitalisation, IV placement, and tube placement and formula dependence. They tried removing the chips and he stopped drinking too and did not eat or drink for 2 entire days. He did not drink out of a regular open cup or use any utensils. He did not eat or drink away from home. He grazed all day and in the night which impacted his sleep. He had sores around his mouth due to repeated licking from the salt. The family had sought help since he was 2 years old with no results. They had multiple physician/paediatrician and dietitian consults and recommendations, occupational therapy for almost 4 years, and speech therapy. After a few weeks of intensive treatment, his food variety was at 164 foods from all 4 food groups at regular texture including raw veggies. He was independently scooping and using a spoon and fork appropriately, and self-drinking water from an open cup. He could take medication more independently from a medicine spoon. He ate at a restaurant and at school with the other kids and started to eat in free choice meals. His mum and dad were trained to implement the protocol with high integrity. He met all (100%) 20 of his goals. His parents reported high acceptability of the treatment (4.8/5) and satisfaction (4.9/5). At over 1-year follow-up, parents reported the feeding problem was much better (4 out of 5), he was still eating all food groups and drinking water, and he had had significant growth especially in height and had slimmed in weight.

A 7.5-year-old male with autism and developmental delay engaged in significant inappropriate mealtime behaviour including aggression, head banging, head hitting, and emesis (vomiting). His caregivers went to significant lengths to maintain his intake of food and fluids, including extremely long meal durations requiring 2+ people to feed meals. He did not eat or drink at school. For dinner, he consumed only one blended low-texture food. He did not chew his food adequately. He did not drink independently or consume an adequate volume of fluids. Constipation and dry, bleeding, cracked lips were a problem, and liquid refusal impacted adaptive toileting skills. On the first day of treatment, he consumed 22 new foods from all the food groups at regular texture and drank from an open cup. His variety reached over 90 foods (including meat) and he quickly met 100% of his goals. His parents and 3 grandparents were being trained to implement the protocol, and school was trained to do a drink protocol and free access recess protocol. Caregivers reported high satisfaction (4.48/5) and social acceptability of the treatment (4.65/5). Gains were maintained at 6-month follow-up and he was eating over 80 foods and completing 100% of meals.

A 4-year-old male with a gastrostomy tube, autism, prematurity (24 weeks), history of ventilator, CPAP, oxygen, and nasogastric tube dependence and failure to thrive ate custard and soup as a nonself-feeder at a certain temperature. If a minuscule lump was in the soup, he would gag and vomit. He had never chewed or used his teeth or swallowed any texture. He might accept 2 other specific foods, but would pack for hours or expel. He consumed chocolate milk mix via spoon feeding as a nonself-feeder. He used an adaptive water bottle that squirted water into his mouth with prompting and assistance. He did not take medications orally (taken via G-tube). He required tangible items during meals. Previous treatment attempts included multiple years since birth with a hospital feeding team, various therapies, and a 10-day hospitalisation for tube weaning (this resulted in some small oral intake of custard, liquid soup, and chocolate milk mix). His parent’s persisted in oral feeding and volume and decreased tube nutrition dependence on their own. On the first day of treatment, he consumed 8 new foods from all the food groups at a junior texture. His variety is now at over 124 foods at any temperature, 28 crunchy foods, and 26 combination foods with crunchy foods. He is now self-feeding and scooping, including holding the container, and can use a fork. He is now drinking independently from a regular full cup including sipping, and drinking from a regular water bottle, and can drink from a regular straw. Liquid variety was increased to multiple flavours of nutritious formula and water in a regular open cup. He learned to eat independently from pouch. He can also now take medications orally rather than via tube. He learned to bite off, chew with his molars, lateralize, masticate, and swallow a wide variety of regular texture foods, including difficult foods in bite sizes such as meats and raw fruit/veg. He also learned to swallow fork-mashed texture foods. He ate all of his food in 2 free access snack practice social meals at a child’s table/chair and stayed seated the entire time. Refusal, expulsion, packing (not swallowing), emesis (vomit), and gagging/coughing all decreased to low/zero levels, and independence, chewing, and swallowing have increased significantly. He transitioned from a highchair to a booster at the family dinner table. His parents were trained to implement the protocol. He met all 22 of his goals in 15 days.

 A 13-year-old girl with typical development and growth consumed no vegetables or fruits. Her diet was limited to 5 specific starches, 1 protein, 1 protein starch combo, and snack foods. She was motivated to change her diet because of social and health (never feeling full, low energy, spikes/crashes) impact. Socially, this posed a significant problem at school, with friends and family, during parties and events, at restaurants, and during travel. Previous treatment attempts since the age of 2 years included multiple consultations with psychologists, eating disorders specialists, dietitians, speech/occupational therapists, gastroenterologist, and anxiety medications, hypnosis, sensory treatment (SOS), play therapy, rewards, removal of privileges, withholding food, etc. Side effects of medication included carb cravings, weight gain, and lethargy. On the first day of treatment, she consumed 13 new foods at regular texture 100% independently including 6 raw plain vegetables. Variety reached 48 foods and she quickly met 100% of goals. She ate multiple new foods at restaurants and ate family dinners independently with no inappropriate mealtime behaviour. Caregivers reported high satisfaction (4.82/5) and social acceptability of the treatment (4.88/5). At 9-month follow-up, she still consumed at least 46 of the foods introduced. Some of the foods not being consumed was due to the family not cooking them or having them available rather than refusal. She was eating the family dinner including a raw salad daily and also was eating at school, at restaurants, and while traveling.

A 3.5-year-old female with William’s syndrome, reflux, and dyspraxia and a history of constipation and failure to thrive was primarily dependent on formula in a baby bottle. Upon admission, she would inconsistently eat egg puree as a nonself-feeder for her mother only and a couple specific fruit puree baby pouches (on a spoon as a nonself-feeder). She had a history of gagging and vomiting just in the presence of other’s eating or a spoon. She did not consume any meats or vegetables or any increased texture foods. She had just recently in the past few months began swallowing some 2 specific snack foods; however, she expelled (spit out) the majority of it. She did not know how to feed herself with a spoon or drink from a cup. She did not drink any water (drank formula only) or drink out of anything (e.g., cup, straw, water bottle) but the baby bottle. Previous treatment attempts included multiple years with a speech therapist for feeding and a consultation with a hospital feeding team. On the first day of treatment, she consumed 8 new foods from all the food groups at a junior texture. Her variety is now at over 70 foods at a fork-mashed texture. She learned to accept, bite off, chew, and swallow various regular texture crackers and breads with various spreads and combination solid bites on top. She learned to self-feed and scoop and eat pouches independently.  She learned to drink water independently from a regular full cup including sipping and drink from a regular water bottle. She also accepted medication in a cup. She ate and drank in free access snack practice social meals at a child’s table/chair and stayed seated. Expulsion (spitting out) and emesis (vomit) decreased to zero, inappropriate mealtime behaviour and gagging/coughing decreased to low levels, and age-appropriate independence with self-feeding/drinking, chewing, and swallowing have increased significantly. Her parents and grandmother were trained to implement the protocol. She met all 21 of her goals in 15 days. Caregivers reported high satisfaction (4.78/5) and social acceptability of the treatment (4.94/5) via questionnaires.

A nearly 4.5-year-old male had autism, pica, and food stealing. Pica was significantly impacting his life and restricting his location, daily activities, independence, and adaptive functioning. He couldn’t go outside freely because he ate dirt, bark, grass, rocks, rubbish, etc. He also ate academic materials such as glue, crayons, plastic, paper, paint, etc.  He also mouthed and bit many dangerous household objects (e.g., extension cord, cleaning products) which had visible teeth marks and bits missing and toys. Pica limited his academic, therapeutic, and leisure activities and materials. Food stealing also significantly impacted his daily life and social engagement. Others had to hide to eat around him. These behaviours significantly restricted him in community and social settings. The cupboards and outdoors had to be locked up at home. He has previously tested low on iron via blood test. He did not consume any vegetables separately (they had to be mashed into other foods) and only ate 3 fruits, and food stealing for unhealthy foods was a huge daily issue. In 9 days, he met all his short-term goals and learned how to independently throw away pica material and rubbish he previously ate, independently put away objects he previously chewed on and ate pieces off, use items appropriately (academic, leisure, therapy materials) that he previously would chew and eat, and to refrain from touching materials that he previously would chew/mouth/eat that are dangerous, inappropriate, or belong to others (e.g., food, electronics, household items), and independently accepted, chewed, and swallowed 25 new foods (including 12 vegetables, 8 fruits). His mum implemented the protocols with high integrity and his current treatment team and family continued/maintained, expanded, and simplified the pica treatment for everyday life. Caregivers reported high satisfaction (4.04/5) and social acceptability of the treatment (4.44/5). At over 2-year follow-up, his mother reported that his pica and eating were much better (4 out of 5) than before treatment.

A 4-year-old male with autism was dependent on liquids and formula to meet his nutritional needs via baby bottle. He did not eat any foods from the food groups (protein, starch, vegetable, fruit) and ate only specific biscuits. He would eat a homemade fruit smoothie as a nonself-feeder, so would not feed himself. He did not drink out of an open cup. His parents reported that he did not have much of an appetite or seek out food. He refused some liquid medications (e.g., antibiotics) and would not accept a gummy multivitamin. He was not able to stay a full day at school and would not eat anything in his lunchbox (even preferred foods) if a nonpreferred food was in it even if it was in a divided section. He has previously had low iron on blood tests and was on supplement. He had had over 2 years of failed treatment attempts from multiple disciplines. On the first day of treatment, he consumed 8 foods from the food groups at regular texture. His variety is at over 120 foods and he is independently scooping and biting off, improved his chewing and swallowing to eat regular texture, self-drinking from a regular open cup, can take medication from a regular open medicine cup, and is transitioning independently to the table. He ate at a restaurant with his family and ate at school and during therapy, and his nanny, mum, dad, and school shadow were trained to implement the protocol with high integrity. He met all (100%) 15 of his goals. At 1-year follow-up, his mother reported that he continued to eat at home well, but not free access at school (without a feeder/protocol).  

A 4-year-old male twin with autism and a history of nasogastric (NG) tube in infancy had a diet mostly consisting of some specific snack foods. He did not eat an adequate or consistent volume of food. He did not eat any vegetables or fruits (except 2 specific fruit pouch purees). He only ate 2 proteins (1 inconsistently) and 1 starch. He did not consistently eat complete portions of foods (e.g., would eat the edges or specific pieces off). He did not drink water or drink out of a cup. He had significant issues with constipation which had required laxatives. He would not use utensils. He had a couple months of some treatment attempts by a therapist. After a couple weeks of intensive treatment, his food variety is now at over 96 foods from all 4 food groups at regular texture. He is independently scooping and using a spoon, biting off from regular portions of foods, and self-drinking water and milk from an open cup. He also can drink water from various water bottles and straws and can take medication from a medicine spoon. He ate at a restaurant with his family and ate freely at a child’s table/chair set with his siblings. His dad was trained to implement the protocol with high integrity. He met all (100%) 14 of his goals. His parents reported high acceptability of the treatment (5/5) and satisfaction (5/5) via questionnaire. At nearly 2-year follow-up his dad reported he was doing great and would pretty much eat on his own.

An 8.5-year-old male with coeliac disease, history of significant constipation requiring laxatives and bowel issues, nutritional deficiencies (iron, zinc) requiring supplementation, eczema, and other developmental difficulties and delays (e.g., fine motor, anxiety) ate zero vegetables or fruits (except one specific pouch fruit). All foods were brand, flavour, and presentation specific (2 meat, 2 dairy, 4 starch). He also would swallow food without chewing and require blending and to be fed for certain foods. He had significant gagging and vomiting and rules about the way foods were prepared and presented and how and when he ate them (e.g., ate 4 pieces of toast even if he was too full and it made him vomit). He would only use a teaspoon (would gag on adult size spoon and refuse to use it) and required fresh spoons and wiping the spoon repeatedly during a meal. He refused to hold/touch certain foods and would engage in inappropriate mealtime behaviour if food got on his face or hands. He could not eat with other people due to the smells and sight and left the area/hid during social events. He could not travel or sleep over anywhere or participate in playdates that went over a mealtime. He also would pick the skin between his fingers at the webbing and this caused scars and bleeding. He had years of previous failed treatment attempts for most of his life including multiple consultations with various disciplines including dietitians, psychologists, psychiatrists, occupational therapists, and over a year of sensory treatment (SOS). On the first day of treatment, he consumed 9 new foods 100% independently. His variety was at 122 foods and he met 100% (all 7) of goals. Caregivers reported high satisfaction (4.87/5) and social acceptability (5/5) of the treatment, and mum was trained to implement the protocol with high integrity. At nearly 2-year follow-up his mum reported he was doing great (4 out of 5), still eating all food groups, and was able to eat with others and away from home now. His BMI moved into the healthy range and his energy and sports participation improved.

A 7-year-old male had autism, intellectual disability, significant weight deficiency/impaired growth/failure to thrive, iron deficiency requiring supplementation, supplement refusal, formula dependence and refusal, medication refusal, toothbrushing refusal, constipation, and ear infections. He ate zero fruits or vegetables, 1 meat, 3 starches, and 3 combos, so 7 foods; however, these had dropped off and were selective by restaurant and the volume was not enough. He did not eat or drink all day at school. He had never fed himself with a spoon. He had just started sitting at the table without the iPad to eat and saying words last year with behavioural treatment. He had aggression and headbanging and was on medication. After a week of treatment (graduated early in less than half the time), he was self-feeding/scooping with utensils and eating a full plate of regular texture portions of a variety of nearly 80 foods from all 4 food groups. Variety reached 93 foods in 2 weeks. He learned to drink from a regular cup. He ate at a café with his family and started eating at school. His mum and dad were trained to implement the protocol with high integrity. He met all (100%) 12 of his goals. His parents reported high acceptability of the treatment (5/5) and satisfaction (4.86/5).