The New York Times recently ran an excellent extended article, When Your Baby Won’t Eat, describing many types and philosophies of feeding therapy programs.
NOTE: Feeding Tube Awareness Foundation does not recommend any particular style or program for feeding therapy. Feeding therapy must be customized to the child’s medical, psychological, and developmental needs. Make sure that your child is medically and developmentally ready for feeding therapy by clearing it with your physician.
What We Have Learned About Feeding Therapy
Feeding therapy takes time, and you will need patience.
You need to address the medical conditions and make sure that tube feeds are well tolerated to improve oral eating. Who feels like eating when they vomit all the time?
Children are often on their own timetables – you may work on skills for months with little progress, and then there is a breakthrough and a lot of progress that happens quickly.
Force feeding doesn’t work.
Children who form a positive relationship with food will enjoy eating.
It isn’t all or nothing. Even children who will be tube fed for long-term can enjoy eating for pleasure.
The root cause of the feeding issues is rarely purely behavioral. There is a behavioral component that is learned as a consequence of underlying medical conditions.
The majority of children wean at home without the use of a program.
It it critical that you work on feeding therapy and weaning when your child is medically ready and able, not because of any misgivings about tube feeding or feeding tubes in general.
Funding for Feeding Therapy
Birth to 3 Programs (aka Early Intervention, Early On)
If your child is under 3, he is very likely to qualify for feeding therapy services through the birth to three or early intervention program in your state. The names vary, but every state has one. Your pediatrician can recommend your child for an evaluation for feeding therapy or other services such as physical therapy, occupational therapy, speech therapy, vision therapy or developmental therapy. State programs vary in their funding. Many states offer therapeutic services in the home, which can be a benefit for children with feeding tubes, since they are eating in their home environment. Other programs are more centrally located at therapy centers. These services are usually free of charge, though a sliding scale copay may apply.
Hospital-Based Outpatient Feeding Therapy
Many children’s hospitals offer outpatient feeding therapy programs, and some also offer feeding groups. These services are not typically based on age. They may or may not be covered by insurance or Medicaid. Programs vary in type, structure, method, and quality, so be sure to get recommendations from physicians or other families in your area.
Private Therapy with Feeding Specialists
Private therapy services are available from both individuals and clinics, and may include both 1:1 services or feeding groups. These services may be covered by private insurance or Medicaid, but some are private pay only. Methods and quality varies widely, so make sure to get recommendations and evaluate the program carefully.
School Speech Therapy
If your child is school age and is receiving speech or occupational therapy, you can ask to see if the therapist is also trained in feeding therapy. Sometimes feeding can be incorporated into speech or occupational therapy sessions at school.
Intensive Feeding Programs
Children who are medically ready to learn to eat orally may be eligible for an intensive feeding program, either on an outpatient or inpatient basis. Many feeding programs are hospital-based and require lengthy hospital stays. Qualifications for the programs vary. These programs are very costly but may be covered by insurance. Those that are not hospital-based or affiliated with a medical facility are more likely to be private pay only. We recommend that Intensive Feeding Programs only be used when a child is medically safe and physically able to wean from tube feeding completely. Once again, quality and methods vary significantly, so evaluate programs carefully and get recommendations before committing.
Feeding Therapy Approaches
Mealtime Focus – Championed by Dr. Suzanne Evans Morris, Marsha Dunn Klein
This approach focuses on including children who are tube fed in mealtimes and mealtime routines. It is about creating a trusting relationship between the child and the feeder, creating stress free and happy mealtimes that build positive relationships with food.
SOS (Sequential Oral Sensory) – Championed by Dr. Kay Toomey
This approach focuses on getting children comfortable with food through food play and allowing a child to interact with food in a non-stressful way. Progression is made from food play to tasting and eating foods.
ABA (Applied Behavior Analysis) Methods – used by most intensive feeding therapy programs in the United States
ABA methods use reward systems to reinforce the desired behavior. Behavior that is not desired is often ignored, and in cases it may be punished. Methods can vary across programs.
Baby- or Child-Led Weaning
It borrows from the “typical” transition from bottle feeding and eating purees to moving to table foods, with the child in the lead.
Some models focus on creating hunger and hunger cues to induce eating.
Turning a tube fed child into an oral eater is difficult. There are just no two ways about it. Once a child has spent the majority of his or her life being fed through a tube, it is very difficult to convince him or her that eating is, in fact, necessary in order to sustain life. It can be incredibly stressful, especially when you are feeling pressure to “get off the tube,” whether the pressure is coming from others or from yourself. Learning to eat is an instinctual process that usually requires little effort for infants. However, when there is a disruption that prevents a child from experiencing oral eating during the critical phases of oral development, the window of opportunity for effortless instinctual learning is missed. Many tube fed children fall into this category, whether they were intubated shortly following birth, required tube feeds to prevent aspiration, or developed severe oral aversions because of GERD or vomiting. Whatever the reason, the process of learning to eat is exponentially more difficult for a child who did not have the opportunity to follow the natural progression of oral development.
Feeding therapy can be immensely helpful to parents who are struggling with knowing how to help their child eat. Until I had a child who literally did not know how to eat, I had never thought about how to even go about teaching a child to eat. We have now had 3 feeding therapists over the course of less than 3 years, and although we have learned great things from each of them, there is one statement spoken by our first feeding therapist that has remained my mantra when it comes to feeding my daughter. On one of our first visits with this therapist, she told me that at that point, we needed to be realistic about the fact that my daughter was not ready to actually eat anything. She was still spitting up and vomiting several times a day and clearly lacked the oral motor skills to effectively swallow her food. Then she said to me, “Right now, our focus needs to be on helping her to have positive interactions with food.”
Positive interactions with food. When she said that, it was like a switch flipped in my mind. It made so much sense. Of COURSE we want her to develop a positive relationship with food! How in the world could I expect her to WANT to eat food or put anything in her mouth when the majority of her oral experiences at that point in time were vomit? I would never expect my other children to want to eat when they had a stomach bug that made them vomit, and I realized that I shouldn’t expect that from her either. From that point on, we moved forward with the assumption that until we figured out and resolved whatever was causing her to vomit multiple times a day and got her reflux under control, she was not going to want to eat, and that was okay. Instead of stressing myself out over trying to get her to let me put food in her mouth, we played with it. Whether it involved putting cooked rotini noodles between her toes or finger painting in the bathtub with baby food, the focus was on helping her to realize that food COULD be positive.
Due to certain conditions, there are some children who will need feeding tubes throughout life. However, the vast majority of children who spend their early months and years with feeding tubes WILL reach a point where they no longer need them. Children need and deserve to have a positive relationship with food, even if they only have a handful of foods that are safe for them to eat. Pushing them too hard too fast does not foster that positive relationship. As my daughter has come to be more interested in food, the battle has shifted from wanting nothing more than to see her take a bite of SOMETHING, to wanting to see her accept a wider variety of foods and eat larger quantities. There is still a great deal of frustration involved in trying to move forward, but setting the priority on making eating a positive experience rather than focusing on the number of calories she’s taking in has reduced my stress level and allowed her to blossom in her own right. We celebrate the victories, big and small, and when we have a frustrating day, we take a deep breath and try again the next day.
“A crust eaten in peace is better than a banquet partaken in anxiety.” ~Aesop
I thought I knew a lot about feeding after five years of ongoing feeding therapy, four feeding therapists, having lived the experience of a child who vomited if food got on his lips to having him enjoy eating (even if it is a work in progress) and having heard other professionals lecture about feeding therapy.
Well, within moments of beginning a 2-day seminar with Dr. Suzanne Evans Morris on Feeding the Whole Child, A Mealtime Approach, my mind was blown. There were things I should have been doing, could have been doing to improve my son’s relationship with food. My thinking about mealtimes and children who are tube fed had been more focused more on the loss – the loss (or acknowledgement) that it is fundamental for a mother to want to feed their child and how emotionally devastating it can be when you can’t, the challenge of keeping a child who can’t eat occupied during a meal, what relatives may say at the holiday table, the separation of a child who is only able to eat a limited diet, etc. But, what I missed was what else a mealtime is really about and it is more than the food.
First, think about a nice dinner you have had – one with friends or family. When you remember the meal experience, it was likely more about the conversation, the enjoyment of a shared social experience, and maybe the food and drink. We watched videos of adult mealtimes and people talked and laughed, and they didn’t pay all that much attention to the food itself or how they were chewing and swallowing. The focus wasn’t on the volume consumed. It wasn’t stressful.
When we have mealtimes with our children with feeding issues, we focus almost exclusively on the mechanics of eating. It is all business. There is pressure to eat what is on the plate or in the bowl. We comment on chewing, swallowing, etc. We don’t enjoy the food or the company and we often don’t use the time to bond or talk with our child.
I found myself thinking back to the first few months of my son’s life. He had an NG, we didn’t have a diagnosis other than reflux, FTT and then delayed gastric emptying. I was gung ho on oral feeding. I didn’t understand oral aversions and how my shoving a spoon into his mouth and ignoring all his cues may make those worse. I figured it was just natural for him to eat orally, and I thought feeding therapy was kind of hokey. I remember waiting for him to vomit, because after a vomit he would eat so nicely. This all makes me cringe now. Who wants to eat after they vomit? I did realize soon after that I was likely doing more harm than good and I also noticed that my son began to refuse to eat with me. Of course, this makes a mother feel horrible. I was a ball of stress and I was putting a lot of pressure on him and eating, and he could feel that. It became medically clear that we were in it for the long-haul with tube feeding and my attitude shifted to getting the tube feeds right and increasing his tolerance of tube feeds. It wasn’t until we got to a GJ where, ironically, oral eating became more enjoyable for everyone and we were all less stressed about it.
What Dr. Evans Morris was talking about was a shift in thinking to supporting children with feeding issues at meal times to celebrate food and relationships. Giving kids reasons to want to eat, rather than having a child’s motivation to eat by an external force (like a reward, or pleasing others). A central part of this is creating a relaxing mealtime. One of the things we discussed was the impact of stress on gastric emptying. Wow, this hit home since so many of us have kids with motility issues. Kids can get into chronic stress patterns over eating. When the body is in flight or fight response, motility slows down. It is physiological, but doesn’t it make common sense? Also, if you think about when you are in that state of mind, do you learn anything? Well, no. You are focused on getting out of the situation; you aren’t going to learn how to eat better.
So, how do we create a relaxing, stress free mealtime? Dr. Evans Morris explained that we start by thinking of the mealtime as a partnership, where our child has an equal role. We, as parents (or our therapists), have to honor our child’s cues or what they are telling us. We have to build (or build back) trust. My big “a ha” moment was an exercise where we had to eat applesauce. First, we ate applesauce feeding ourselves with a spoon. Next, someone fed us applesauce. It was a completely different mouth feel. The spoon became really obvious, the applesauce and taste less obvious. Next, we fed our partner watching for their cues of when they were ready to accept food. This was really hard. I found myself focusing on the position of the spoon, how much was on the spoon and I missed looking at the eyes. I didn’t always wait for the other person to lean forward signaling they were ready for more. When I was being fed, I felt pressured to swallow and I found that I couldn’t manage to do that. I was overwhelmed by the volume in my mouth. I turned my head away. I didn’t look at my feeder. We then had to feed each other ignoring cues completely. WOW. My feeder was putting the spoon on my lip to make me open my mouth and I really didn’t like that. I cringed, she put more on the spoon. I wouldn’t have known if it was applesauce or another fruit. I was so focused on getting the food out of my mouth, I didn’t care. If it was more socially appropriate for me to have spit it out in the middle of a conference, I likely would have. Have I done this to my son? Looking back, absolutely. I have been guilty of pushing on the lip to open the mouth, putting more on the spoon and trying to feed faster when he was being accepting of food. I bet most parents are. You should definitely try this at home. You need to experience it for yourself. I don’t think I would have learned the lesson if someone just told me to put myself in my child’s place, because I already thought I was more empathetic to his situation than I really was.
I know that in thinking back I wasn’t as attentive to the cues my child sent me with oral eating and I was pretty motivated to ignore them, at times. In the end, we want our kids to have a positive relationship with food and a desire to eat. Pay attention to the subtle cues your child sends you, or what your child says if they are verbal. Notice that when you ignore those cues, they get bigger.
This may also require a change in perspective for some parents, but one of the great things about tube feeding is that it can take the pressure off of oral eating enough to allow children to develop good oral skills and a good relationship with food, so that they become better oral eaters.
One of the things I really loved about this approach is that is focuses on the enjoyment of eating as the end goal, not achieving a certain volume of food eaten. It is eating for pleasure, and the rest follows.
Dr. Evans Morris set forth a framework on how to think about a mealtime. First and foremost is Comfort. From a tube fed child perspective, GI comfort weighs heavily on this. We need to address the medical issues in order for children to have the desire to eat. Who feels like eating when they are constipated, their throat burns from vomiting, or their tummy is full of food from a meal hours ago. We need to address the medical issues and we need to get the tube feeding bit right, for the oral eating to improve. This means having tube feeds that are well tolerated, in addition to having feeding schedules that accommodate oral eating. I know from my own personal experience that my son’s oral eating improved and we were able to make more headway on oral aversions once we got the tube feeding right and he felt better.
There is also a significant sensory component to comfort. Many children who are tube fed have sensory issues. Dr. Evans Morris discussed what I think is a more novel approach to improving sensory issues. She uses music in her practice with great success. Not just any music, but music that uses certain frequencies designed for sensory integration and learning. She also feels there is a rhythm to eating that is enhanced by music tempo. Music is also relaxing. This really appealed to me. My son has significant sensory integration issues and we use therapeutic listening to help with sensory processing and motor coordination. I had never put it together with feeding skills. But, it makes sense that if it helps sensory processing and learning that it would carry over to learning to eat and the sensory experience of eating. Dr. Evans Morris likes Hemi-Sync. She has a list of the CDs she likes on her site (link below). What she made very clear is that parents and therapists need to like the music – be it Hemi Sync or other music, since you will be listening to it to. Hemi-Sync CDs are offered many places, including Amazon.
With infants and young children, she said try humming. Humming creates a gentle vibration that is very soothing. Humming also is a great stress reliever for adults. We did an exercise where we hummed and reported how we felt after. I wasn’t expecting to feel calmer, but I did. Humming helps organize sensory input.
Her case studies also mentioned more common sensory inputs like deep pressure/joint compressions, swinging, do movement/heavy work. I personally did a lot of these things, including brushing in my son’s physical, occupational and feeding therapy. It is worth reading up on sensory processing disorder, sensory integration disorders, if only to understand more about treating sensory issues.
Another tactic that Dr. Evans Morris has found useful is giving a small water bolus about 30 minutes prior to a meal. It helps prepare the stomach for food and also can serve to calm a child because water is so well tolerated. All of these things in combination increase comfort.
Next is Confidence. Confidence is about creating an interest and curiosity about food while maintaining the trusting partnership. She talked about creating environmental opportunities for food exploration. Eating at a table and having food available with no pressure to eat it. Maybe discussing how interesting the food is – color, texture. Or having a child help prepare some of the food or get involved in the mealtime. This also reinforces our kids who are tube fed eat what the family eats (when it is medically safe for them to do so). Parents who are desperate for their children to eat will allow them to eat anything, even if the variety of what they eat dwindles to a few foods.
I feel like this is an area where I can improve. Since so much of my son’s oral eating is at school during the week, our real opportunities would be lunchtime or an early dinner on the weekends (given how early my son goes to bed). We often have errands or are busy and lunch isn’t always a real sit down meal. My son may eat, and then we may eat before or after. When we do have sit down meals, I am completely guilty of letting him watch a video at the table and serving him the foods I know he likes. I thought I was doing it to keep him engaged, because it is hard to sit at the table and not really eat much. But, we need to do more to have a meal with conversation that reinforces all the positive social things that happen at mealtime that aren’t about the food. And, I need to let him become more curious about foods that are on the table without feeling pressure that he needs to try them.
Of course, you need Competence – the feeding skills necessary to eat. She discussed that these are often small steps and that challenges have to be “just right.” You can’t expect a child to go from puree to eating a sandwich. There are many small steps in between. She didn’t go into specific techniques, but she has loads of information on her website and I will include links below.
All of this is done in the context of Connections, which is the supportive feeding relationship between a parent and childwhere a parent pays attention and listens to the child’s cues. This is in contrast to some behavioral approaches that have you ignore the cues your child gives. She also discussed the roles we have in creating a mealtime partnership. As parents, it is our role to provide the food for our children to eat and to be present (not multitasking or doing other things) at meals, so we can participate in the meal with our children. It is our children’s responsibility to determine what they eat and how much. This is a tougher one for tube feeding parents. So often, we are looking for our kids to eat more. But, we have to remember that forcing food doesn’t build a positive relationship with food or increase our children’s desire to eat. Also, with children when you apply pressure, you often get pressure back which makes mealtimes stressful and unproductive.
She showed us how she does an initial evaluation on a child, and a parent. She focuses on what is working for the child and what isn’t working, as well as what is working for the parent and what isn’t working. It allows you to acknowledge what is working, even if it is a small and start building from there to address the things that aren’t working for both parent and child.
The message in her work is clear. We want children to have a positive relationship with food. We want children to be curious about food and to be self-motivated to eat without external rewards. We want mealtimes to be positive and rewarding experiences for both parents and children.
Feeding Matters is an organization dedicated to identify feeding issues and helping parents with children who are learning to eat. They have a program, the Power of Two, that connects two parents together to help each other with feeding struggles.