Sarah had received an ng-tube (nasogastric tube) by the time I first met her, and shortly after her first appointment with me she received a g-tube (gastronomy tube). Her parents expressed a small amount of relief that they were at least able to help Sarah gain weight and grow. With weekly feeding therapy, Sarah was eventually willing to sit in her high chair during family meals and play with a variety of foods and textures. She would occasionally even bring tastes of foods to her mouth, but would spit these tastes back out again more often than not. She continued to follow with a pediatric GI doctor due do difficulties tolerating larger amounts of formula via her g-tube.
After about 8 months of therapy, Sarah was still not “eating” by mouth. Her GI doctor recommended that the family travel to an inpatient behavioral feeding program for an intensive session of therapy. They had research to prove that their methodology worked and they were willing to accept Sarah despite the fact that she was just over a year old. I continued to consult with the family and I was excited to hear what the behavioral clinic’s recommendations would be. Sarah’s progress had been slow and I agreed that we needed some fresh eyes on her.
Sarah, her parents, and her older brother travelled out of state for their intake meeting prior to her inpatient admission. They were told that the program was rigorous and difficult for both children and families. The program would involve a highly structured approach to mealtimes including positive reinforcements for the child when they opened their mouths, took a bite, and swallowed. The program would also include negative reinforcements when a child demonstrated any aversive behaviors; a classic behavioralist model (think Pavlov’s dogs). Parents were not allowed to feed their child until the child demonstrated consistent responses when fed by a team of psychologists trained in the approach. Parents would observe all feeding sessions via video monitor or two-way mirror, while receiving coaching and feedback from a lead psychologist. The reason for an inpatient admission to the hospital was twofold; 1) the treatment would be intensive with multiple sessions per day in a controlled environment, 2) they would be discontinuing all feedings via g-tube to encourage hunger, therefore each child required close medical monitoring.
There are many of these programs across the country, each touting research to support their methods. I will be clear that in my clinical opinion I believe these programs are harmful to a child’s emotional well-being among other things. However, being a “rookie”, I had no knowledge of what these programs really entailed, and was highly interested in what they could bring to our existing treatment plan. The family was nervous but optimistic about what kinds of progress this program might spark in Sarah. We put our weekly sessions on hold while they participated.
Upon returning from their trip, the family was devastated. The admission had been deemed a “failure” by the program team. Sarah had not only refused to cooperate with most attempts at behavioral modification, but she had lost nearly 5% of her body weight from an already petite frame. The family was discharged from the inpatient program with instructions to continue the behavioral modification techniques at home, with hopes for a better response within Sarah’s natural environment. These techniques included (at the least invasive) non-removal of a spoonful of food from in front of Sarah’s face until she took a bite. Sarah would often take a bite and hold it indefinitely in her mouth, refusing to swallow. The family was encouraged to use a dry spoon in her mouth to induce a gag reflex and force her to swallow if she persisted in the “holding” behavior. Another technique to “encourage” swallowing, was to place ones hands over Sarah’s face, covering her eyes, until she swallowed what was in her mouth. The theory of these techniques was to show Sarah that taking a bite of her own free will was better than the consequences of not taking a bite.
The family described the treatment sessions at the hospital as “the torture sessions” or “waterboarding”. When describing Sarah’s responses to the sessions they used words like “terror”, “drowning”, and “dying”. This was clearly not something that was going to work for Sarah or her family.
Lesson #4: There is no ONE therapy approach for every child.
If a man is desperately afraid of heights, and you take him up in a plane and throw him out with a parachute, he will probably survive, given some prior instruction. And if you take him up in that plane, kicking and screaming and pleading, every day and throw him out, will he get over his fear of heights? Maybe. But will he ever wake up in the morning and think, “Gee, I’d really like to go skydiving!”? Probably not. This is where I find fault with behavioral programs. Their data shows amazing results in “getting kids to eat”. But, what does that mean? Does that include a system of positive and/or negative reinforcements from an external source (parent, caregiver, teacher, therapist) for their entire lives? Or is there a better way of encouraging children to feel comfortable with food? Comfortable to a point where they are SELF-motivated in their exploration of food. Comfortable to a point where they wake up in the morning and think, “Gee, I’d really like waffles/cheetos/chicken/peas today!” I hope so.
A program may have the best data and the highest success rate in the entire world. That does NOT mean that it will work for every child. Each child is different and has a unique journey that brought them to their current situation. The techniques and approaches used by any program should be flexible enough to accommodate the needs of an individual child or family. The reason programs with more flexibility have very little data is that it is very difficult to compare cases without a strict structure. In the end, every family needs to weigh the costs and benefits (financial, emotional, and physical) of any program to ensure that it is the best fit for their child and family.
After about 8 months of therapy, Sarah was still not “eating” by mouth. Her GI doctor recommended that the family travel to an inpatient behavioral feeding program for an intensive session of therapy. They had research to prove that their methodology worked and they were willing to accept Sarah despite the fact that she was just over a year old. I continued to consult with the family and I was excited to hear what the behavioral clinic’s recommendations would be. Sarah’s progress had been slow and I agreed that we needed some fresh eyes on her.
Sarah, her parents, and her older brother travelled out of state for their intake meeting prior to her inpatient admission. They were told that the program was rigorous and difficult for both children and families. The program would involve a highly structured approach to mealtimes including positive reinforcements for the child when they opened their mouths, took a bite, and swallowed. The program would also include negative reinforcements when a child demonstrated any aversive behaviors; a classic behavioralist model (think Pavlov’s dogs). Parents were not allowed to feed their child until the child demonstrated consistent responses when fed by a team of psychologists trained in the approach. Parents would observe all feeding sessions via video monitor or two-way mirror, while receiving coaching and feedback from a lead psychologist. The reason for an inpatient admission to the hospital was twofold; 1) the treatment would be intensive with multiple sessions per day in a controlled environment, 2) they would be discontinuing all feedings via g-tube to encourage hunger, therefore each child required close medical monitoring.
There are many of these programs across the country, each touting research to support their methods. I will be clear that in my clinical opinion I believe these programs are harmful to a child’s emotional well-being among other things. However, being a “rookie”, I had no knowledge of what these programs really entailed, and was highly interested in what they could bring to our existing treatment plan. The family was nervous but optimistic about what kinds of progress this program might spark in Sarah. We put our weekly sessions on hold while they participated.
Upon returning from their trip, the family was devastated. The admission had been deemed a “failure” by the program team. Sarah had not only refused to cooperate with most attempts at behavioral modification, but she had lost nearly 5% of her body weight from an already petite frame. The family was discharged from the inpatient program with instructions to continue the behavioral modification techniques at home, with hopes for a better response within Sarah’s natural environment. These techniques included (at the least invasive) non-removal of a spoonful of food from in front of Sarah’s face until she took a bite. Sarah would often take a bite and hold it indefinitely in her mouth, refusing to swallow. The family was encouraged to use a dry spoon in her mouth to induce a gag reflex and force her to swallow if she persisted in the “holding” behavior. Another technique to “encourage” swallowing, was to place ones hands over Sarah’s face, covering her eyes, until she swallowed what was in her mouth. The theory of these techniques was to show Sarah that taking a bite of her own free will was better than the consequences of not taking a bite.
The family described the treatment sessions at the hospital as “the torture sessions” or “waterboarding”. When describing Sarah’s responses to the sessions they used words like “terror”, “drowning”, and “dying”. This was clearly not something that was going to work for Sarah or her family.
Lesson #4: There is no ONE therapy approach for every child.
If a man is desperately afraid of heights, and you take him up in a plane and throw him out with a parachute, he will probably survive, given some prior instruction. And if you take him up in that plane, kicking and screaming and pleading, every day and throw him out, will he get over his fear of heights? Maybe. But will he ever wake up in the morning and think, “Gee, I’d really like to go skydiving!”? Probably not. This is where I find fault with behavioral programs. Their data shows amazing results in “getting kids to eat”. But, what does that mean? Does that include a system of positive and/or negative reinforcements from an external source (parent, caregiver, teacher, therapist) for their entire lives? Or is there a better way of encouraging children to feel comfortable with food? Comfortable to a point where they are SELF-motivated in their exploration of food. Comfortable to a point where they wake up in the morning and think, “Gee, I’d really like waffles/cheetos/chicken/peas today!” I hope so.
A program may have the best data and the highest success rate in the entire world. That does NOT mean that it will work for every child. Each child is different and has a unique journey that brought them to their current situation. The techniques and approaches used by any program should be flexible enough to accommodate the needs of an individual child or family. The reason programs with more flexibility have very little data is that it is very difficult to compare cases without a strict structure. In the end, every family needs to weigh the costs and benefits (financial, emotional, and physical) of any program to ensure that it is the best fit for their child and family.
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