Challenging case with advice from Suzanne Evans Morris, PhD

In this post, I have described a challenging case  and solicited advice from Suzanne Evans Morris, PhD, one of the experts in our field. Suzanne graciously provided commentary and advice and challenged me to look differently at the feeding situation. I hope you enjoy reading this and get some ideas to expand your own practice! Thank you Suzanne!

Case Report and Analysis – Anna
Feeding Assessment at 2 years. Feeding Program from 2 years to 2 years-8 months 

I am working with Anna, a young child who is 2 years old who doesn’t like to eat. Anna has never liked to eat based on parent report and has a long history of vomiting. Otherwise, she is a healthy, happy, toddler. We suspected that parents had been force feeding Anna since she was an infant out of desperation and that Anna probably had reflux and volume limiting as an infant. 

Parents report that feeding is very stressful, and vomiting is somewhat random but occurs every day, often more than once per day. When we met Anna, she was on Periactin (appetite stimulant) and it dramatically improved her eating for about 2 weeks, but it was wearing off and she was returning to refusal behavior with meals. She was underweight. When we watched Anna’s mother feed her the first time, she had her phone on the highchair tray and was trying to put large bites of puree into her mouth. She refused by turning away, keeping her mouth closed, and pushing the spoon away. Mother looked defeated and exhausted. 

Our feeding team suggested a trial of an acid blocker due to the vomiting and feeding therapy to work on oral skill development and a more pleasant and successful feeding at meals. Parents said they wanted a home therapist and said they would think about the acid blocker. 

She came back to see us 6 months later. She was now on erythromycin for vomiting (treating motility) and nothing had changed with her feeding. She is still vomiting daily. We made similar suggestions and parents agreed. 

They added an acid blocker and continued the motility medicine and vomiting stopped for about a month before it slowly began to increase again. Anna began coming to feeding therapy weekly with me. In therapy, I worked with Mom and Dad and Anna. 

I made the following suggestions using what I consider to be a hybrid approach using both behavioral and sensory strategies: 

1. Reduce meals from 5 per day to 3 with a no pressure snack where Anna is offered preferred purees and crunchy foods. Her weight was stable, and I wanted to give her more time to get hungry between meals. 
2. Her chewing is immature, so I asked parents not to give chunky thick puree which appeared to be too difficult for her but to offer smooth puree (they were giving very thick dense purees almost the consistency of toothpaste). 
3. We removed the phone and offered a few simple toys as distraction during the meal when needed.
4. I asked parents to present the spoon but wait for Anna to come and get the bite not to put it in her mouth. 
5. We encourage self-feeding so now Anna has a spoon during the meal and will self-feed someone off the meal. 
6. We targeted chewing skills with crunchy meltable placed laterally, chewy tube biting, and visual and verbal cueing. This is improving nicely. 
7. I asked parents to involve Anna in the kitchen with more interaction with food preparation and play.
   

Where we are now 

2 months later, Anna is eating better, and her weight has improved. Meals are less stressful but not where we want them to be. We are encouraging parents to offer foods but not pressure Anna to eat when she doesn’t want too. They are not comfortable with that and feel Anna had very low hunger cues. They become worried and stressed when she has a poor meal and doesn’t want to eat at the next meal. 

I notice that she often grimaces with bites when she swallows, and often this occurs from the first bite of the meal which I find somewhat unusual. The foods that appear the easiest for her are yogurt and baby food bananas and drinking. Liquids have always been easier, and she drinks unprompted and often asks for a drink. Our team has suggested some testing such as an UGI x- ray and GI scope to make sure we aren’t missing something, but parents would like to avoid any type of procedure. In most of our sessions, Anna eats well, and parents will say it is easier in therapy than at home. I have seen some episodes of gagging, coughing and gagging, and one meal where midway through Anna started to hold her puree and then had projectile vomiting. We know the erythromycin typically needs to be cycled and vomiting may be returning because it is wearing off. She is currently off of this and we would like to continue the acid blocker and go back to the appetite stimulant. We feel the combination might target her appetite, stomach accommodation, and discomfort. Parents are considering this. 

My thoughts- 

I feel that is often difficult to tell if these issues are medical or behavioral. At this point, we are considering the fact that we might be missing something. Our team would like to rule out EoE, but parents want to avoid a scope . I have even wondered if a trial off of dairy might help although she has had periods of no vomiting with medical management. My other thought is to continue to encourage parents to offer food but not pressure to eat even if she skips meals. Her weight is fine to do this, and I believe she will stay hydrated because drinking is easier for her. 

Thoughts from Suzanne Evans Morris What are the most important issues for Anna and her mother? 

1. Anna has never liked to eat. She has been uncomfortable during and following mealtimes (since early infancy) because of gastrointestinal issues of reflux and vomiting. 
2. Anna’s mother is extremely worried about Anna’s lack of desire to eat, her belief that this is related (at least in part) to a low appetite, and her own fear that if Anna doesn’t eat enough and eat foods that support good nutrition she won’t grow and develop normally. 
3. Mealtimes are accompanied by a high level of stress for both Anna and her mother.
   

What are the questions we need to ask? 

Why are meals so uncomfortable and stressful for Anna?

1. Anna has experienced gastrointestinal issues with reflux and vomiting her whole life. A portion of her refusal to eat and her dislike of eating is a very functional way of taking care of herself. Eating = pain and discomfort Refusing to Eat = avoidance of pain and discomfort. Intermittent Eating (with reluctance) = a survival response to the body’s need for some food in order to stay alive. However, even when she opens her mouth to take some food from her mother, it is with protest.
   

2. What personal and cultural beliefs and experiential issues create such a high level of stress for Anna’s mother?

We don’t know Anna’s mother’s personal history that reflects her own beliefs about how eating or not eating relates to her role as a mother and to beliefs that reflect the ethnic and personal culture of the family that she and Anna’s father (and Anna’s grandparents) were raised in. When personal and cultural beliefs about being a mother and relating to others in the family don’t match what Anna is doing to be more comfortable, it can escalate her stress and discomfort. You have emphasized with her the importance of reading Anna’s communication signals and not forcing her to eat when she says “no”. The mother appears to be following the general instructions you have suggested, but she really hasn’t internalized them at a comfortable level. This can create even greater stress and conflict for Anna because the nonverbal messages she is getting from her mother are not congruent. At one level she probably is picking up her mother’s huge wanting her to open her mouth and eat while she waits and doesn’t shove the spoon into Anna’s mouth; but at other times her mother probably is showing many signs and possible actions of continuing to force Anna to open her mouth and eat. Her mother’s feelings and nonverbal messages often don’t match. Anna really doesn’t know what to expect and continues to be on guard at mealtimes. This creates more stress and emotional “NO’s when she feels there are expectations she can’t meet with comfort. 

3. How does mealtime stress affect Anna’s digestive system as it relates to signals of hunger and satiation? 

We know that the body responds to both real life-threatening stress (i.e. a wild animal or a car accident) and stress from worry, disappointments (i.e. a poor score on a test or upsetting a family member) with the same physiological stress response. The body prepares itself to fight, flee, or freeze. The brain pours out a cascade of hormones that make this possible. Physical energy is needed in the extremities in order to run more rapidly or fight with greater strength . The brain needs to go on autopilot to react rapidly in getting away or fighting off the perceived danger. As the body shifts into survival mode, it activates the non-thinking brainstem and emotional limbic system in order to activate primitive survival action. It does not pause and use the frontal cortex to make a logical decision about handling the situation. In shifting to survival mode, the blood is sent predominantly to the arms and legs. It is shifted away from digestion and away from support of the immune system. These functions are rather irrelevant if the brain’s perception is that life is endangered. A special hormone (corticotropin releasing factor – CRF) is released by the hypothalamus. One of the main functions of CRF is to inhibit gastric emptying. I think this may be one of the reasons why many children with feeding refusals and poor appetite don’t want to eat. The digestive function of the stomach is on some degree of “pause”, possibly resulting in a degree of delayed gastric emptying and overflow of a still-full stomach into the esophagus as reflux and/or vomiting. In this situation there would be little or no hunger or appetite to drive eating. 

These are the very symptoms that Anna has shown since infancy. Some of this may have been overridden when she was given Periactin because the medication stimulates hunger. With the medical stimulation of hunger, she ate more food. But as soon as the medication began to wear off, there was no carryover; and she returned to refusing the food. 

Anna eats relatively well during therapy sessions. Her associations with the therapist are probably more positive and with fewer mixed messages than she experiences with her mother at home. No matter what the therapist tells her, it is possible that Anna’s mother interprets this in a self-critical or self-judgmental way. One of the most common beliefs among mothers is: “A good mother can feed her child” and if the baby has a feeding problem this can expand to “If my baby/child doesn’t eat well, there is something wrong with me.”

4. What is the overall impact of the PPI medication that has been given to reduce acid reflux?

Dealing with the frequency and discomfort of Anna’s reflux and vomiting is one key to improving her interest in eating. But doing this solely with medication acts only to reduce the symptoms. Medication does not address or resolve the underlying problem. One of the things we know about the PPI medications is that they inhibit most of the stomach’s acid production. One of the known effects of this is that the body will gradually try to override this, knowing that it needs stomach acid. The result is that for most people the amount of the medication needs to be increased over time. The most important side effect of this severe reduction in hydrochloric acid is its interference with the absorption of specific vitamins and minerals that depend on an acid environment. Very significantly for children like Anna is that 3 of the nutrients that become poorly absorbed are Vitamin B12, zinc and magnesium. Even a mild deficiency of each of these nutrients can result in a reduction in appetite, nausea and vomiting. Zinc is especially noted for its negative impact on taste and loss of appetite. Is it possible that in combination with everything else going on, Anna’s body may have developed specific micronutrient deficiencies that are causing or exacerbating the appetite reduction and other gastrointestinal symptoms that contribute to not wanting to eat?

She has also been taking Periactin. Three of the potential side effects listed for this medication are anorexia, nausea and vomiting. Even Erythromycin has major gastrointestinal side effects (at least in the larger doses given as an antibiotic). What might be the combination impact of even mild side effects from these two medications if there are some of the same side effects resulting from a vitamin or mineral deficiency from the PPI medication?

5. Is attempting to resolve Anna’s feeding difficulties primarily through the use of pharmaceutical medications the best primary path toward building Anna’s appetite and interest in eating?

This has been the major foundation of your feeding program. The use of Periactin (to stimulate appetite), Erythromycin (to speed up gastric emptying), and Nexium (a PPI medication to reduce acid and reflux) has been the major focus upon which you have built and/or want to build Anna’s greater interest and cooperation with eating. The questions I am raising about the specific impact of some of these medications are not often explored or asked by doctors or dietitians. I have worked with children in the past where giving a zinc supplement or vastly increasing foods high in zinc (especially for a child who has a feeding tube) has resulted in very observable increases in appetite and interest in eating. This is something that needs to be done with a dietitian because zinc and copper are very interdependent and giving too much zinc can inadvertently cause a deficiency in copper. 

How does all of this fit with the therapy program you have developed for Anna and her family? Some thoughts and observations: 

1. I don’t think it is necessary to separate out what aspects of Anna’s feeding issues are medical or behavioral. The reflux, vomiting and much of the appetite issues are clearly medically related. This is where it all began. What we don’t know is how much of the continuation and severity of these patterns is being triggered by stress and/or by medications. I’ve always felt that what psychologists and many therapists label as “behavior” should really be called “communication”. Everything we do or choose to do is a behavior! Anna’s body is communicating distress and fear of discomfort. Like any of us, she will do her best to seek greater comfort (physical and emotional). The key here is to really listen to and honor her verbal and nonverbal communication at mealtimes and to work toward greater physiological comfort associated with food and mealtimes. This will invite her to experience less stress (which in itself will reduce the gastrointestinal discomfort and help move toward comfort) and gradually develop the trust and confidence in the person feeding her and in her own emerging abilities.
   
2. Working with both parents is very important. You have done a lot of this, but much of what you describe is at the procedural level with guiding them in terms of not forcing, giving Anna some choices etc. But Anna’s mother has very clear feelings, fears and preferences that relate to her beliefs about eating, about being a mother, about fear of the future etc. She needs someone who is willing and able to discuss what she is going through at a feeling level during and after Anna’s meals, in family expectations between what she is experiencing and the beliefs she grew up with in her family of origin. It might be helpful to talk together about how Anna’s grandparents react to the feeding challenges, to how she feels as a mother when she is feeling fear and frustration, to differences in the way that kids are fed in the USA and in India etc. There’s an interesting article online on “Child Rearing Practices in Indian Culture” .
   

These discussions could take place in your sessions, or with a very open, listening psychologist or social worker (someone with a mental health background) etc. [ I have benefited a great deal in these areas from the work of Barry Neil Kaufman at The Option Institute in Sheffield, MA. Their focus is very much on the role that beliefs and attitudes play in our feelings and actions and ways of gently exploring these areas with ourselves and others. Their website is at https://option.org . There is a lovely discussion of their Option Process philosophy . Kaufman wrote a wonderful book many years ago called “Happiness is a Choice” .

3. I would talk with the family about stress and how it affects overall comfort for them and for Anna. I’d emphasize what we all intuitively know that stress negatively affects our stomach and digestion. I think most people have had the experience of eating a nice meal and then receiving “bad news” on top of a full stomach. Or having a highly stressful day at work and then eating dinner. We often describe this as feeling like you have a stone in your stomach or realizing later that you are burping up food that you had eaten 6 hours earlier! Anna’s mother is particularly interested and concerned about Anna’s poor appetite and lack of awareness of hunger. Speak her language and talk about how stress can make this a bigger problem. 

I have used this book for decades as a prerequisite text for my small Mealtime Partners Workshop. I get so much feedback from both parents and therapists who attend the workshop that it is the most helpful book on the required list. One of the interesting connections is that Barry (who goes by the name of “Bears”) and his wife, Samaharia are the parents of a child (now a young man) who was diagnosed with severe autism as a toddler. Their story of Raun and how a program based in the Option Process is woven throughout the “Happiness is a Choice” book. You may want to read it and invite the parents to read it as well. I wrote an Information Paper many years ago that I use in my workshops called “The Happiness Option at Mealtimes” that addresses the happiness principles that Bears discusses in the book with ideas that apply them to mealtimes (attached at the end of the post). 

There are many ways of dealing with overall stress and specifically mealtime stress. My favorite tool is the use of music or specific types of sound (containing binaural beats) that can work beautifully to reduce stress for everyone. I like the music alternative because it is non-invasive and literally brings people together in resonance, on “the same wave length”! 

There also are many simple breathing patterns, simple mindfulness activities, and things such as humming that are easy and can fit for many people. The bottom line is to change the “feel” of the mealtime for everyone. 

4. I think it is important to explore some of the nutritional questions with your dietitian and perhaps have some blood testing for nutrient deficiencies. You have to be careful, however, about simple blood fluid analyses for both magnesium and zinc. They apparently don’t give the full information, especially if there is a mild deficiency. Testing for both minerals can be done through an analysis of the red blood cells instead of just the blood fluid. Your dietitian can find information on a lot of this by doing internet searches and looking at side effect lists that are in various pharmaceutical web lists online.

Another alternative would be to respond “as if” there was a poor assimilation of key nutrients because of lack of enough acid in the stomach. One alternative would be to wean Anna from the PPI medication (Nexium) to an H2 blocker such as Tagamet or Pepcid AC. The research that has been done showing a great many potential negative side effects of the PPI meds has specifically shown that these side effects are not there for the H2 blockers. This is because these medications do not totally inhibit acid production so that the stomach has some acid to facilitate assimilation of nutrients that depend on an acid environment. Another alternative would be to have your dietitian make lists of specific foods that are extra high in zinc (key nutrient associated with appetite) and also B12 and magnesium. Emphasize the incorporation of these foods in pureed form into Anna’s diet whenever possible. 

5. Other things that you are doing with her in therapy look quite appropriate. Encouraging self-feeding and independence whenever possible makes a lot of sense, but we also know that children are introduced to self-feeding independence much earlier in the USA which is very focused on independence in a way that is not typical in many other countries. This may be in conflict with some family values. Creating a clear structure of meals and snacks can positively affect her appetite as well as reduce stress through greater predictability. Positive interaction with food preparation in the kitchen, visits to the grocery store, and food play is, of course, great in helping Anna develop some different and more positive experiences with food without the pressure of the mealtime setting. 

6. My only question is with your emphasis on the development of chewing skills at this point. It, of course, would be developmentally appropriate. But I would be more inclined to take the positive things that Anna is already doing and expand on them . . . especially in areas that blend with things her mother is interested in too. Anna is drawn to smooth, soft foods that don’t have lumps. You comment that at times she grimaces when she swallows. Drinking is also a preferred skill. From her mother’s perspective she is using a high speed blender to prepare Anna’s meals. Thus, she makes a very positive contribution to her child’s meals. Anna likes yogurts and thin smooth bananas. You may want to think about how these could be expanded in tastes and thickness and other sensory inputs such as level of sweetness, temperature, etc. Anna and her mother could experiment with spices such as cinnamon or nutmeg in yogurt or blend up fresh fruit to add to the yogurt or bananas in a way that only the taste was altered, not the texture. You could then move to tiny, regular lumps in mashed banana or avocado or using a food mill with fresh fruits and veggies or various beans and lentils. You would be expanding her diet within a range of what she can experience as success. All of this would be preparing her for handling lumpy foods that don’t require chewing. I love to think of this consistency as pre-chewed-food consistency . . . which kids have to be comfortable with if they are really going to chew beyond “the soft meltables. I also wonder if since her drinking is good, if she would accept a thin smoothie. . . especially if she helped make it. 

7. I’m also wondering about the presence of esophagitis . . . either from acid or pepsin reflux or from EOE. The grimacing with swallowing is something I often see when kids have a sore throat . . .which could be from esophagitis. Sticking with thinner, soft smooth foods and hopefully reducing the reflux with an H2 blocker medication as well as stress reduction and greater emotional comfort at mealtimes might be helpful right now.

You have parents who are reluctant to expose Anna to instrumental diagnostic procedures. You can talk about what you are doing now clinically as ways of getting at least some information without immediately going to an invasive procedure. They mayfeel listened to and “heard” and may be more open to testing later to find out if there is esophagitis (from reflux of EOE) if it is the last alternative for gaining information rather than the initial step. Sticking with soft, smooth foods for a while could reduce the risk of increased pain or discomfort if esophagitis is chronically present. You can very gradually have Anna’s mother increase the smooth thickness of the puree and together you can begin to notice if there is a point where Anna shows more grimacing or refusal of the food. Then back up to the thickest level she can take with ease. I’m concerned that (especially if EOE is present) that moving too quickly into crunchy, thick or lumpy solid foods could trigger a lot of negative and uncomfortable experience. I think you would be wiser to stay within Anna’s comfort zone for a while. This also fits for a mother who would like to see Anna eat more. If you can get more variability to prevent boredom while keeping it as comfortable as possible, she is more likely to eat more. For most kids when they shift from a pureed diet to a solid food chewable diet, they actually slow down and for awhile eat less food. So increases in skill could be counterproductive for a while. 

8. Your desire to gain diagnostic information is “on target”, but I’m very cautious about this with many kids who are reluctant eaters. I have learned the hard way that these procedures (even if done under anesthesia) can increase the problem and discomfort (i.e. scoping can increase or aggravate a sore throat, fear can cause emotional trauma) for some children. I will never forget one of the first kids whom I referred for a swallow study. It was an “appropriate referral” at least in terms of the importance of seeking an answer to a specific clinical question related to her swallow and whether it was wise to move on to the next step. I, however, didn’t know the radiologist who I discovered during the first part of the evaluation moved too quickly and authoritatively for the child. She refused to stop the study when the child started to scream. It was horrible for the child and for me as well. The end result was that, of course, pouring liquid into the mouth of a screaming kid gives no meaningful information. But the most important aspect was that the child refused to eat anything by mouth for more than 6 months (She was, fortunately, a child whose nutrition was provided by a g-tube). She had been a child who had many physical coordination and respiratory issues who had developed interest and enthusiasm for small amounts of purees and liquids in our therapy program. All this was lost following the swallow study. But it was a powerful lesson for me about weighing the potential value of information from a medical procedure and the potential impact of a procedure on the child. 

Further reading From Suzanne: