Complex Case – Changing Therapy Strategies When Needed
*I shared this case with Suzanne Evans Morris and she provided some guidance and analysis at the end. Hope you enjoy
John is a 6 year old male with a complex medical history:
- Downs syndrome
- Esophageal Atresia and TEF fistula with several dilations and repairs
- Laryngeal Tracheal Cleft s/p repair with history of Aspiration
- Severe gagging and vomiting as an infant.
- Obstructive Sleep Apnea with Tonsillectomy and Adenoidectomy
John was referred to our feeding team around 10 months of age with 100% dependence on tube feeding. The team has provided medical, nutritional, and therapeutic management to reduce gagging/vomiting, assist with growth, and to transition to oral feeding. When John was an infant, a developmental pediatrician asked me why I wasn’t doing oral stimulation with him? The answer was because he couldn’t tolerate it! He would vomit when I even touched his cheek or lips. His hypersensitivity was throughout his GI tract not just on the face. Medication, special formulas, slow feeding, gentle therapy, and time reduced this hypersensitivity.
His story is complicated and his therapeutic needs have changed over time. I have changed my therapeutic approach to him and his family over time as well which is what I would like to share here.
His mother is fabulous and intense. John is head strong and defiant at time.
As a toddler, John made improvements in oral eating in therapy using a structured approach and even spent some time with a 4 week intensive feeding program. He left the program eating purees and drinking from a straw with some tube feeding at night. Oral skills were improving. For many of my patients- they take off at this point into easier eating but not John.
The structured program was working some of the time. He continued to have periods of refusal and oral holding and set backs. As he got older he would say he sometimes felt like he was choking. After a bout with pneumonia, we discovered a fistula in his trachea that need repaired. He would get sick and begin vomiting again. He had a laryngeal cleft identified which was repaired . He was diagnosed with obstructive sleep apnea and eventually had his tonsils removed (this relieved the choking sensations he was having).
Over the years, he has continued eating but did not make the transition to “easier and enjoyable eating” that I see many of my patients make. Many of the children I work with have complex medical issues and we often are able to help them feel better with medical/nutritional management, therapy and eating gets easier. What I typically see is that over time – with feeling better ini the GI tract, participating in therapy, everything gets easier and falls into place.
We transitioned John to Nourish and Kate’s Farm to increase the real food in his tube feeds which improved his GI function.
John sees our feeding team about 5-6 times per year and periodically comes for therapy and then also takes breaks. But with John, it’s been harder. Eating hasn’t been easier and as John has transitioned into school age, his mother has been determined to stop using his tube because she wants him to be more “typical”. I was seeing a lot of battling of wills during feeding, family was stressed, John was stressed and it wasn’t going anywhere.
About 6-9 months ago, I asked mother if she would come back into feeding therapy. He is doing better from a medical standpoint and is very stable now. I felt strongly that John needed a break from being pushed. I started talking with his Mother about backing off a bit and using his tube as a supplement when he doesn’t want to eat. She chose to use the tube when he was asleep just once in the evening for some extra nutrition. Interestingly, his mother blamed professionals including our team for “scaring her about calories” for years. I have taken this statement to heart and am thinking a lot about the messages we give to our patients.
I started seeing him 1-2x/month using a more play based non pressure approach. I coached his Mother and Grandmother on non-pressure. Offering food/liquids but not pressuring and letting it be ok if he chose not to eat. Offering him choices of foods, asking him to get involved in making the food, asking him if he wants help eating or wants to self feed. We took some therapeutic “eating” walks (thanks Marsha Dunn Klein!) that were a lot of fun.
Mom has continued to use some gentle rewards but John and his family are completely transformed. John is asking to eat and drink. He is trying new foods. No one is stressed. His Mother and Grandmother are so happy. He is gaining weight. He is swallowing in a more timely manner. Eating is becoming something he wants to do.
My Thoughts: With this case, I am not endorsing or criticizing any one type of therapy. I am more making the point that it’s not a one size fits all and as therapists we need to be flexible and open to different approaches or strategies. A child’s and family’s needs also change over time. I started with a structured feeding approach that works for many of my younger patients but it didn’t work completely for John which is why I had to change my approach. This is also a medically complex child and part of the reason he struggled for many years were underlying medical problems.
I invite you to learn as I have from Suzanne’s analysis. It’s important to open ourselves up to constructive feedback because that is how we learn. I remind myself sometimes that this is not about me. I don’t have to be right or have the answer all of the time. Suzanne’s years of experience and wisdom have improved my ability to care for these children. Thank you Suzanne for your expertise!
Analysis and thoughts from Suzanne Evans Morris, SLP Ph.D. (New Visions)
1. He clearly is a child whose initial associations with food and his body have been highly negative and inherently stressful. All of the medical interventions and uncertainties have been equally (or more) stressful for his mother. She may have needed the intensity you describe just to keep going and be a strong advocate for John.
2. You and her mother describe and perceive John as a “head strong and defiant” child at times. How we perceive a child and the choices they make often leads toward the intervention choices we make and the language we use. What would be different if the world saw John as a “highly communicative child” or as a “child with clear ideas of what he needs who is expressing frustration when he’s not listened to and understood” or simply as “a survivor”. The descriptors “headstrong and defiant” often lead toward an adult-structured “behavioral program” to extinguish the behavior. This usually reduces figuring out what a nonverbal child is trying to communicate to us. It addresses the external symptoms, not the root cause of the perceived behavioral problem.
3. Your initial program for him sounds as though it was predominantly (or solely) focused on eating skills and getting him off the tube. I’m presuming, from what you describe and my knowledge of most inpatient programs, that this involved primarily structured behavioral modification with the use of external reinforcers.
4. John learned the mechanics of eating. . . but there was no transition to “easier and more enjoyable eating”. This is one of the main downsides (as I see them) to a program that is predominantly adult driven and does not focus from the very beginning on what is important to the child. Your later recognition that a real food blended formula such as “Nourish” and a healthier milk product such as Kate’s Farm finally meet some of his internal needs by increasing his gastrointestinal comfort. Most of the kids I know have difficulty developing greater ease and desire to eat when they are uncomfortable (especially with GI discomfort). That is why work with stress reduction for the child and parent and work on comfort during tube feeding is at the top of my priority list. If we can improve that, even a small amount, we have a greater chance of moving toward more enjoyable eating at whatever level the child can manage at the time. I’m glad that we now have commercial formulas such as “Nourish” and ”Real Food Blends” and that many insurance companies will pay for them. However, it is a shame that the option of having the mother make her own homemade blended formulas (with the support of a dietitian) wasn’t introduced from the very beginning. I also find that many mothers reduce their pressure on the child to wean from tube feeding when they have the personal satisfaction of making real food meals for their kid rather than just opening a can of formula.
5. John’s mother’s belief that having a tube when he is in school makes him “atypical” is a core issue. This is a belief that nonverbally is communicated to John and may increase his stress. It tells him indirectly that he is not “okay” and won’t be accepted by others. As you described, this resulted in John’s mother placing more and more pressure on him to eat. John responded by becoming even more stressed and communicating “No way”. This added a Power Contest that increased his lack of internally directed eating and enjoyment of mealtime. A mother who blames you and the dietitians for “scaring her about the importance of calories” may feel this way as she tries to deal with her own discomfort about what has evolved. I find that one of the most important beliefs and attitudes when I’m with parents (or anyone else) is that “We all do the best we can, based on our current beliefs” (Barry Neil Kaufman, The Option Institute). When we help parents identify and understand how these beliefs are influencing the choices they make, change is possible. This becomes a dialogue without judgment or blame that allows another person to explore and arrive at their own understanding.
6. Your personal self-questioning about the beliefs that guided your therapy in the earlier period of John’s therapy reflect your willingness to explore a play-based approach to feeding that was geared toward helping John experience a different and more pleasurable relationship with food. When this was combined with understanding, support and coaching of his mother and grandmother, real change became possible. They shifted much of the responsibility for what and how much to eat to John and provided him with varieties of foods and eating experiences (without pressure) that moved mealtimes toward greater ease, comfort and internally directed eating.
7. I loved your final description that “John is asking to eat and drink. He is trying new foods. No one is stressed. He is gaining weight. He is swallowing in a timelier manner. Eating is becoming something he wants to do. Of course, he is also doing better from a medical standpoint and is very stable now.”
8. To me the key of John’s story is that the initial therapy was directed toward externally getting him to change for the adults in his life. The program was predominantly adult-driven. It focused on getting JOHN to change. But the essence is that John changed when YOU changed and began to learn from your experience and ask a very different set of questions of yourself and of John’s family.
As therapists we are taught to be constant doers and to take responsibility for everything in therapy. We frequently blame ourselves, the kids and parents if change doesn’t happen fast enough. We often see experiences like this as failures, and believe that somehow, we messed up or are confused about why the child still doesn’t like to eat. That is simply a belief. . . and one that we can change. Could we genuinely feel gratitude for these experiences as providing us with extremely valuable and profound learning experiences and the opportunity to change ourselves and grow as individuals and as therapists? I love Albert Einstein’s comments that “Anyone who has never made a mistake has never tried anything new” and “Failure is success in progress”. To me this is the essence of everything. May we move toward greater exploration of our beliefs about mealtimes and feeding therapy. May we have the courage to let go of the beliefs that no longer serve us and discover a new realm of approaches that contribute to easier and more enjoyable eating.
(Suzanne Evans Morris can be reached at New Visions. Her email is firstname.lastname@example.org)