I thought I would write about 3 different but interesting cases of dysphagia with total food refusal. These children were all different ages but previously healthy children with no significant medical issues who began to refuse food to the point of total food refusal. They refused even their favorite foods, snacks foods, and candy. They each were referred for evaluation and were living on liquids and/or tube feeding. A team approach was used to provide intervention.
Case 1: E.B.
Referring symptoms: 4 year old female with a 3 week history of total food refusal. 3 weeks prior to the appointment E.B. who was a previously good eater stopped eating solid foods. She was seen by her pediatrician who then diagnosed her with a urinary tract infection (UTI) and constipation. He started her on a stool softener, antibiotic for the UTI, and an appetite stimulant (cyproheptidine). 2 weeks later, there was no change in her eating and she had lost 3 lbs. She was only drinking juice, gatorade, milk, and water. She was then referred for feeding evaluation.
Evaluation: Evaluation revealed normal oral motor structures and function. Pt was observed drinking gatorade without difficulty. There were no signs or symptoms of aspiration or pulmonary issues. Her activity level and motor skills were typical. When asked to eat Cheetos, a once preferred food, E.B. refused. With prompting she licked them without any sign of difficulty. We then asked E.B. to participate in a “behavioral” feeding game where she accepted a dry spoon for a reward. We then moved her to a spoon with a small bite of applesauce. She accepted but then expelled it and began crying saying she couldn’t swallow.
A differential diagnosis included either gastroesophageal reflux and painful swallow, eosinophillic esophagitis (again may present as difficulty swallowing solids), or something with a neurological basis.
E.B. was placed on medicine for gastroesophageal reflux (a proton pump inhibitor such as prevacid), continued the stool softener and was told by the physician to stop the appetite stimulant which was not helping her eat foods. (More on the use of cyproheptidine in a later post and the best way to use it to help kids eat more volume). She was also given a high calorie formula as a meal replacement to help her meet caloric and nutrient needs until she got better.
E.B. returned to clinic 1 week later. She was drinking 4-6 pediasures per day and had regained her lost weight. She was taking her reflux medicine with no change in eating behavior.
Therapy: I used a behavioral feeding game with her again to encourage intake. This time we used a dry spoon, dipped spoon in juice, and jello. She easily accepted dry and dip spoons. She accepted 3 jello bites. She swallowed 1 with maximum cueing and encouragement. She grimaced with the swallow. The next 2 bites, she held in her mouth while crying for over 10 minutes and then expelled them. She then drank a “milk shake version” of pediasure thickened with simply thick to a honey consistency. She had no difficulty swallowing the thickened liquid. Throughout the session, I encouraged her that her “swallowing muscles were working” and let her feel my swallow.
We discussed further medical work-up or referral to psychology. However, an hour later her Father called me to report that she was eating yogurt and pretzels saying “they cured me”. I actually have no idea what helped her except that possibly she had pain from reflux and a fear of swallowing. The reflux was being treated and therapy that involved swallowing thicker liquids and talking her through the process of swallowing as well as behavioral reinforcement gave her the confidence to move forward.
Case 2: T.C.
Referring symptoms: T. C. was a 6 year old male with an 8 week history of total food refusal and weight loss. T.C. was living on milk, water and juices and had previously been a good eater.
Evaluation: Evaluation revealed oral motor structures and function were normal. Pt was observed drinking juice without difficulty. There were no signs or symptoms of aspiration or any significant pulmonary issues. His activity level and motor skills were typical. When asked to eat crackers T.C refused. With prompting, T.C. tried a cracker and gagged. Mother described a history of bad breath, complaints of stomach pain, and spitting up as an infant. When asked, T.C, said he sometimes had “throw up” in his mouth.
Diagnosis: Symptoms are indicative of gastroesophageal reflux.
Intervention: He was placed on a proton pump inhibitor for reflux. He also was given a high calorie supplement as a meal replacement to counter recent weight loss and ensure proper caloric and nutrient needs would be met while we were treating him.
T.C. returned to clinic 4 weeks later. He was back to eating a regular diet with many of symptoms resolved and was not complaining of stomach pain or reflux. 3 months later all symptoms were resolved.
Case 3: P.D.
Referring symptoms: 16 year old typically developing female with 5 year history of dysphagia and g-tube dependence. P.D. had a history of severe vomiting around age 11 with dehydration and weight loss. Local hospital work up was inconclusive and P.D. had a g-tube placed for nutrition and weight gain. She was unable to swallow consistencies thicker than a milk shake and was tolerating her tube feedings well. When asked to describe her problem, she said she could not swallow solids, they would not go down. She had previously had medical and psychological work ups.
Evaluation: P.D. had normal oral motor structure and function. She was able to swallow thin liquids without aspiration and had no pulmonary history. Because of her age she was able to participate in the exam with excellent cooperation. When asked to swallow a cracker, P.D. was observed to chew the cracker, swallow, and then regurgitate almost immediately. This was repeated several times.
Diagnosis: Vomiting and possible rumination syndrome, cricopharyngeal achalasia or esophageal motility disorder, or eosinophillic esophagitis.
Intervention: A modified barium swallow study (MBSS) with esophageal sweep was done to determine if solids would pass through her esophagus. Even though P.D. did not have typical signs of aspiration, the team decided to get a MBSS to further evaluate her oral, pharyngeal, and esophageal phases with food. ( A barium esophagram was considered to assess esophageal motility, however, this test is typically done with liquids and P.D.’s symptoms occurred with solids). MBSS results were abnormal. They revealed that P.D. was able to swallow liquid and solid consistencies without aspiration. However, only a portion of the bolus left the oral cavity with normal pharyngeal and esophageal transit. Approximately 2-4 seconds after the swallow, P.D. had severe tongue thrusting/gagging with expelling of contents that had never left her mouth. She was actually not vomiting and her esophageal transit looked functional. This indicated poor oral sensation and gagging with a possible neurological basis for the problem.
Based on these results, P.D. was referred to Neurology for tongue E.M.G (Electromyography) to assess lingual function. (electromyography definition: diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons)). Results were normal.
Next, a brain MRI was performed. The results indicated that P.D. had a Chiari 1 malformation.
“Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.” (info from http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm).
P.D was scheduled for suboccipital craniectomy and C1 laminectomy for decompression of Chiari malformation. Two days after surgery, P.D. was eating solid foods without difficulty. G-tube was removed shortly after that.
Conclusion: All three of these cases had a similar presentation of severe food refusal but with very different etiologies; behavioral, gastrointestinal, and neurological. Each case involved different interventions for eventual resolution. A team approach utilizing physicians, therapy, and nutrition were necessary for each child to return to normal eating.
Very informative article, thank you so much for your site.
I will choose foods for my baby more carefully after reading your
post. It is really informative and helpful