The Feeding Family

I've gotten more than a few questions from readers about different food textures. What is a texturized puree? A soft cube? A meltable solid? For typically developing children the boundaries between these textures are sometimes fuzzy, and therefore many parents aren't aware that a scrambled egg and a piece of banana can be two very different foods from an oral-motor perspective! Today we'll talk about purees and what those "stages" really mean in relation to your child. The focus of this article is on children with oral-motor delays or oral-sensory aversions, but the content can be applied to children with typical skills as well.

What is a puree? A puree is a consistency similar to baby food. There are many different puree textures, some can be thin and runny, while others are thick or have soft lumps.

Stage 1 or Thin Puree: This consistency is similar to a slightly thickened liquid. It coats the spoon well but still drips off easily. This consistency is offered as a first step solid food because it is considered one to two steps "thicker" than breast-milk or formula. For older children this consistency is easy to swallow quickly, however it can pose a risk for children who are known to aspirate or choke on thinner liquids and foods.

Stage 2 or Thick Puree: This consistency is considerably thicker than stage 1. It can be similar to a smooth applesauce. It should stay mounded on the spoon when scooped but fall off the spoon if you tip it upside down.

Pudding Thickness: This type of puree is similar to, you guessed it, pudding! Foods that would be considered a pudding thickness are yogurts or smooth mashed potatoes. These foods can be very difficult to swallow for children with weak oral muscles or a weak swallow.

Stage 3 or Texturized Puree: This can be a very complicated texture for children with even mild oral-motor or sensory delays or impairments. It consists of a stage 2 or pudding thick puree with small, soft lumps throughout. I would say that about 20% of my initial evaluations are for children who are having difficulty transitioning from stage 2 purees to stage 3 purees. In future articles we will discuss strategies to help children transition to texturized foods.

Almost any food that you or your family eats can be blended into a puree. Foods should be allowed to cool to room temperature and then blended in a food processor or blender with liquid until the desired consistency is reached. Adding small amounts of water, milk, or broth will make a puree thinner, while adding small amounts of corn starch can add more thickness.

Our Sunday Fun-Day posts feature fun, easy, food-related activities for you and your family to enjoy. These include ways to explore new food textures or flavors outside of the pressure of a "mealtime". We hope that this "food-play" will allow a new opportunity for your little ones to learn to love food.

This week's activity is Oobleck, a well-known messy-fun activity that is wonderfully easy to set up. To make Oobleck, you only need two ingredients: corn starch and water. Mix the two together in equal amounts to create a weird and fun mixture that firms up solid when manipulated, but "melts" back into a liquid when held in a warm hand or simply left on the table.

Here are a few new ideas to make Oobleck a great learning experience about smells, colors, and textures:

What's that smell?: Instead of water, mix your cornstarch with fruit or vegetable juice, vinegar, or even chocolate milk. This will add a subtle scent and color to your Oobleck. Have fun guessing what each one smells like.

Tie-Dye Oobleck: Once the water and cornstarch are mixed, drizzle food dyes over your Oobleck. See what happens when the dyes are mixed or swirled. Talk about the colors and how they change to build vocabulary.

Buried Treasure: Hide 3-4 small beans, nuts, raisins or another small hard food in the Oobleck mixture. Encourage your child to help you find the "buried treasure" within the mess. This will help build texture awareness and fine-motor skills. Don't use this activity with smaller children who might put the bean or nut in their mouth. It could be a choking hazard!

While Oobleck is completely edible and non-toxic, this is not an activity to focus on eating. This activity is meant to encourage your child to explore a new food-like item through the senses of sight, touch, smell, and even sound! All of these experiences can help your child feel more comfortable about food with these same sensory properties. Have fun!

Ah, Sunday afternoons... it's the end of the weekend. One last chance to relax and have fun before the work-week or school-week starts again on Monday. This Sunday is the start of another new feature at The Feeding Family - Sunday Fun-Days! (See our other new feature on Wednesdays - Hump-Day Treats)

Our Sunday Fun-Day posts feature fun, easy, food-related activities for you and your family to enjoy. These include ways to explore new food textures or flavors outside of the pressure of a "mealtime". We hope that this "food-play" will allow a new opportunity for your little ones to learn to love food.

Grilled Cheese Puzzles
Today's Sunday Fun-Day activity is one that I'm borrowing from my own childhood. My mother is a teacher and therefore a super-creative mom! She used to make this for my sister and I, and we always had fun with it.

1. Explore ingredients: Offer 1-2 kinds of bread and cheese. Try English muffins, dark rye, or cinnamon-raisin breads for something different. If your child is easily overwhelmed by many different choices, only offer a few options that aren't too radical. You can offer new items gradually when you repeat this activity in the future. Allow each child to touch, smell, and taste the different ingredients if they want. Talk about what is the same and different about each one. This is a great way to build language skills by talking about color, size, texture, temperature, and smell.

2. Build your sandwiches: Each child (or adult!) can choose their ingredients and build their sandwich. An adult should take each sandwich to the stove or table-top sandwich maker for cooking. Talk about how the sandwich changes when you cook it (bread turns darker, gets warm, cheese melts, etc.)

3. Puzzle time! This was always my favorite part! Instead of cutting the sandwich into regular halves or triangles, an adult should cut the sandwiches into a "puzzle". Place the puzzle pieces on a plate for each child. Now have fun putting the pieces back together! 

Progress! Not a word that had been at the forefront of my therapy sessions with Sarah. But since my trip to the New Visions Clinic in Virginia, progress was our word of choice. In four weeks, Sarah went from automatic meltdown during tube feedings to an active participant. She was requesting breaks during gravity bolus feedings and allowing for gentle abdominal massage and venting of gas through her g-tube before, during, and after feeds. However, she was still showing many signs of stress and discomfort. As formula flowed into her belly, she would breathe more heavily, close her eyes, and rub her ears. Her parents and I all felt that something was still not right.

Sarah’s parents were reluctant to add another doctor or medical group to their already complicated team of professionals. They consulted with the physicians from their inpatient behavioral feeding program. The program suggested that Sarah had “dumping syndrome”, a scenario in which the body rapidly expels food or liquid through the digestive system due to a damaged GI system. Dumping syndrome is common in children who have had Nissen fundoplications, as Sarah had along with her g-tube placement. The symptoms didn’t add up though, and Sarah’s parents felt uncomfortable with such a serious diagnosis made over a phone conversation. Sarah’s pediatrician was also out of ideas and further recommended to the family to another feeding team lead by a GI doctor.

This new feeding team suggested the placement of a g/j-tube (combination gastronomy tube and jejunostomy tube), which would allow for Sarah’s formula to be dripped slowly into the jejunum, the second part of the small intestine, just past the lower sphincter of the stomach. 

No surgery would be necessary to change the g-tube to a g/j-tube, but it would need to be changed under anesthesia and with some radiation to ensure proper placement. The new team felt that Sarah’s discomfort was the result of overstimulated sensory receptors in the stomach, probably in conjunction with food intolerances or allergies. The idea was to give Sarah’s stomach, as well as her emotional system, a nice long break from food. Once Sarah’s system was given time to re-regulate itself, the team thought that therapy directed at the feeding aversions would be successful.

Sarah’s parents were initially afraid of another “medical” procedure. Especially when they had been told that the placement of the g-tube would solve many of their problems and in turn caused many more than they could have imagined. They were also concerned about what a j-tube would mean for their daughter. A j-tube meant that Sarah’s feedings would need to run for most of the day. She would have to wear the small feeding pump in a backpack during the day. Would she still be able to participate in dance class? What about playing outside with other kids at their neighborhood park? What about swimming in the lake during the summer? Fortunately, the new GI doctor walked through the entire process with both parents. Sarah would be able to participate in most activities with only a few modifications. For certain activities, the feeding could be stopped for a few hours to allow her a little more freedom. Eventually, they would try to run the feedings overnight, so that Sarah would have even more time “off the pump” during the day.

Sarah received her g/j-tube a little more than a week after her first evaluation by the new feeding team. Being fragile, it took a very long time for her body to heal after the new placement. Her family struggled with leakage around the g/j-tube site, infections, and with the new process of carrying around a feeding pump everywhere they went. After a few weeks, things had finally settled down and Sarah was back to herself, and even a little bit better than she had been before. Overall, the transition to the g/j-tube was a success. Sarah no longer retched or arched during tube feedings. She appeared comfortable almost all of the time. The one exception was during activities that were particularly stressful. Sarah still demonstrated retching and gagging in response to anxiety, even if it was unrelated to food. She even began to explore foods independently during family mealtimes. She no longer appeared “afraid” of food, even though she was not yet eating by mouth.

Lesson #6: Sometimes one finish line is the start of another journey.

Even though Sarah is now tolerating her tube feedings, gaining weight, growing, and happy; the real work is about to begin. This is the beginning of the true feeding therapy. Now that Sarah’s medical needs are met and she is comfortable, we will begin to explore ways to help her eat comfortably by mouth. 

The phrase “oral aversion” describes the avoidance or fear of eating, drinking, or accepting sensation in or around the mouth (i.e. toothbrushing or face-washing).  A typically developing child learns that eating and drinking are fun and positive experiences.  A child with an oral aversion has somehow learned that eating and/or drinking is uncomfortable, unpleasant or causes anxiety.

What causes oral aversion?

Oral aversion can result from a variety of medical issues or early childhood experiences. Sometimes we are not sure why a child develops an oral aversion, but it can usually be traced back to one or many of these issues.

Medical trauma:  When a child is in the hospital they may experience a wide range of unpleasant interventions around their face and mouth. These can include more mildly unpleasant experiences like bad-tasting medications or breathing treatments or can include more invasive experiences like intubation, feeding tube placement (oral, nasal, or gastric), or need for oxygen or ventilation support. 

Lack or absence of early feeding experiences: For many reasons a child may not be able to eat early in life. Lack of these early and formative feeding experiences may lead to aversive behaviors simply because a child does not know or understand what is expected of them and they may not have the oral-motor skills necessary to eat age-appropriate foods.

Discomfort: Children with gastrointestinal disorders (reflux, constipation, food allergies) or respiratory issues (asthma, chronic environmental allergies, oxygen dependence, sleep apnea) may develop oral aversions because eating is associated with discomfort. Children with GI discomfort, even if it is mild, can make associations between food and feeling bad. Children with respiratory issues can often find that eating is difficult because we stop breathing briefly during every swallow, which can make eating for these children very tiring.

Sensory integration/regulation disorders: Children with sensory processing, integration, or regulation disorders perceive sensation differently than typical children. This can include low awareness of sensory input (unaware of a messy face, stuffs mouth in order to “feel” food better) or high awareness of sensory input (intolerant of lumps or texture in food, dislikes strong colors or smells). Children with altered sensory input can become aversive to foods with the characteristics they find overwhelming or unappealing.

Choking episodes: This is a very special subset of children with oral aversion. Children who have experienced a choking episode may have a true “food phobia” rather than an oral aversion. Children who have become aversive to eating or drinking after a choking episode should include a psychologist or child therapist in their feeding team to help the child and family deal with the trauma of that event.

This is not a complete list of reasons a child may become orally aversive. However, in my experience, these are the most common. Often an oral aversion will develop from several of these scenarios together. If you are selecting a feeding team to treat your child’s aversion, see our suggestions for choosing the right therapist.

It was just about two years into Sarah’s feeding therapy journey and her family seemed exhausted. They had been to five different doctors in four different hospitals in two states and still they felt no closer to a “cure” for Sarah. She still cried, retched, and gagged through EVERY g-tube feeding and now just at the sight of food. If anything her aversions were getting worse, not better, and my stock of therapy resources, strategies, and bright ideas had run dry.

During this same time, our feeding clinic team was given the opportunity to attend a private workshop with Suzanne Evans Morris at the New Visions/Mealtime Partners program in Faber, Virginia. Suzanne is a well-known SLP in the areas of oral aversion, oral-motor delays, and feeding/swallowing disorders. She co-authored the pediatric feeding disorders “bible” Pre-Feeding Skills and has taught and lectured all across the country.

Her workshop for our feeding team was outstanding. During our second evening session, Suzanne showed a short video of a client she had treated. The 9-year old girl on the screen nibbled reluctantly on a donut hole and then screamed and cried in anxious anticipation as her father prepared her g-tube feeding. As the formula entered her stomach she retched and gagged, eyes watering. I was frozen in my chair. This was SARAH! I couldn’t believe that another child out there was experiencing the same feelings during tube feedings!

Suzanne’s approach was so simple it made me smack my head in frustration. Why should tube feedings be any different from oral feedings? If a child is uncomfortable during a tube feed they are very unlikely to ever put anything else in their stomach voluntarily. Suzanne’s suggestion was to allow the child to control their tube feeding. In a small child or infant, this included teaching the parent to read their child’s cues and stop and start the flow accordingly. In older children, this included asking the child to say “stop” when they needed a break and “go” when they felt ready again. This, in combination with standard relaxation techniques and positioning strategies, gave the child control over their own body and what was happening to them. Eventually the anxiety of having something done to them would reduce and the child would become more open to new experiences involving food.

Lesson #5: Always be open to the “magic” of learning something new!

When I returned home and started therapy sessions again with Sarah, I embraced my new-found knowledge and attempted to implement these child-directed tube feedings with Sarah and her family. After two sessions, Sarah was still struggling with the feeling of formula in her stomach, but was actively requesting breaks and letting us know when she was ready for the flow to begin again. No longer was she crying and screaming through the entire experience. Sarah was learning about her body! She was beginning to recognize that she had some control over the experience and that seemed to greatly decrease her fear of the tube feedings.

At several points in my career, I thought I knew “a lot” about treating feeding disorders. Even when I was just starting to treat, I thought I had most of the answers. What I’ve learned over time is that there is ALWAYS something new to learn. Whether it’s new research, new treatment approaches, new books to read, or new experts to learn from; I now take pride in the “magic” of building my knowledge and resources. It takes humility to admit that you don’t have all the answers, but the adventure of finding out is incredibly rewarding.

Stay tuned for Chapter Five: The Finish Line

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.

Sarah’s family was like many families of children with feeding disorders. They had a happy, healthy baby girl who just wasn’t eating like the other babies. She spit up more. She fought the bottle at feeding times. And, she just didn’t seem to enjoy being fed. Her brother had been a great eater and never had a problem growing and gaining weight. Her parents just couldn’t figure out what was wrong with their baby. Would she grow out of it? Were they doing something wrong?

So, Sarah’s parents did what any family would do; they asked their pediatrician.

He referred them to the state’s 0-3 early childhood program for an evaluation and also to our feeding clinic for an evaluation. The 0-3 program physical therapist (PT) found Sarah to have a moderate delay in her gross motor skills. The PT and the feeding team recommended weekly therapy. After 3 months of weekly therapy, a developmental therapist (DT) and occupational therapist (OT) completed a re-evaluation and suggested adding weekly DT and OT to the family’s services. After about 6 months of therapy services, the family was referred by their GI doctor to an out-of-state intensive inpatient feeding program. The program staff included a team of psychologists, another speech therapist, a dietician, another GI doctor, and an ENT (ear, nose, and throat doctor). So, let’s review. Sarah and her family were then seen by the following specialists:

• 1 Pediatrician
  
• 2 Pediatric GI doctors
  
• 1 ENT
  
• 1 Psychology team
  
• 2 SLPs
  
• 1 PT, 1 OT, and 1 DT
  
• 2 Dietitians

In summary, that is 12 specialists at 4 hospital systems. What started as a small
concern for this family quickly spiraled into a much larger problem with many
different systems to navigate. As with many families of children with feeding delays, Sarah’s parents were thrust into the role of telephone operator. We spent the beginning of many sessions just catching up on the multitude of recommendations and changes made by the many other members of the feeding team. Sarah’s family was often confused or uncertain when given conflicting recommendations by different team members.

Lesson #3: Build a core team, preferably with members who are willing and able to communicate frequently.

When a child is diagnosed with a feeding delay or disorder, some families respond by wanting as much information as possible. Second and third opinions are an excellent idea and trying a few therapists can be essential in finding someone who you and your child feel comfortable working with. But, eventually it’s best to build a core team of doctors and specialists who can help create a treatment plan encompassing all aspects of your child’s development. If needed, additional specialties can be added as consultants to the team, with the core team members integrating the new recommendations into the common treatment plan. The members of the team should be willing to communicate frequently with other team members, whether in a monthly staffing of your child’s case or via telephone/email communication.

Building a solid team that communicates well will lesson the pressure on families and parents to pass along recommendations. Parents are able to focus on the content of each session without furiously taking notes they can pass on to the next therapist or physician. Also, understanding what each member of the team is focusing on can help you, as a therapist, better design your treatment activities and home program to mesh within the global treatment plan.