Pediatric Dysphagia: More Than Just “Picky”

By Alex Strauss

Food aversions and obsessions, strange mealtime habits and behaviors, delays in developing the mechanics or the skills to self-feed, aspiration of liquids, difficulty swallowing, and flat-out refusal to eat.

These are daily realities and a source of anxiety for as many as 25 to 50 percent of babies or young  children and their families. For these children, mealtimes are often fraught with emotion and marred by coughing, choking, gagging, retching and crying. Whether the problem is physical or behavioral in nature, parental stress tends to be high and child nutritional status low. In the most severe cases of feeding and swallowing problems - also known as pediatric dysphagia - a child may receive 100% of her nutrition and hydration from a feeding tube.

“Feeding is a complex activity,” says Megan Johnke, Director of Therapy at LifeScape in Sioux Falls. “It is physical, social, and emotional. One child’s feeding problem may be just as complex or more so than another’s.”

Just the mechanics of eating require the engagement of a staggering 26 muscles and 6 cranial nerves, making eating more physically complex than either walking or talking. And yet, pediatric dysphagia, especially in its less severe forms, is often dismissed as “picky” eating by both parents and medical professionals, many of whom believe that a child will grow out of it.

While this can happen, research suggests that the longer a child’s dysphagia persists without intervention, the greater the chance for long-lasting consequences which can range from malnutrition to damaged family relationships, emotional challenges and even delayed development.

“I think it’s very important for physicians to be aware of feeding and swallowing problems as these can lead to long-term issues such as severe oral aversion and refusing to eat which can, in its most severe form, end up requiring patients to receive a gastrostomy tube,” says Sioux Falls pediatric gastroenterologist Brock Doubledee, DO. “Other problems such as aspiration must not be overlooked because they can lead to problems as severe as aspiration pneumonia.” 

Recognizing Dysphagia

The first step in helping families sidestep those potential long-term consequences is recognizing pediatric dysphagia early and making an appropriate referral for therapeutic intervention.

But how do you recognize true dysphagia from a normal childhood “phase”? While there can be a fine line between “picky” eating and dysphagia, research conducted at Children’s Hospital of Chicago and published in the Journal of Parenteral & Enteral Nutrition in 2014 suggests that even picky eaters manage to maintain satisfactory nutrition even with a limited diet, while those with dysphagia often do not.

“We start to get concerned if a child is eliminating an entire food group, such as no fruits or no vegetables,” says LifeScape Speech and Language Pathologist Heather Hewitt, who works closely with kids across the dysphagia spectrum. “Or they may be eliminating a particular texture such as any food that is crunchy or wet. Sometimes the problem is that they are not really able to manipulate it around in their mouth.”

A child transitioning off of a G-tube may need help learning to eat again, while an infant graduating from the NICU may never have experienced the sensations, or used the muscles, needed for swallowing. Kids with sensory problems may need help getting more comfortable with certain foods, while those with behavioral problems may need to learn more appropriate mealtime habits. Even children who are simply late starting on solid foods may have difficulty adapting if the switch from liquids to solids occurs after the ideal 6-month mark.

“I had one child that we thought was just a picky eater,” says Hewitt’s colleague, Therapy Manager Melissa Carrier-Damon, also a Speech and Language Pathologist. “We noticed that she was wincing when she was swallowing and it turned out that she just had such large tonsils that she just didn’t feel safe with anything other than pureed food. It took a referral to identify the problem.”

As common as feeding problems are in typically-developing children, they are even more common among those with special needs. It is estimated that as many as 80 percent of these children suffer from some level of dysphagia.

Patient-Centered Therapy

Because feeding challenges are unique to each child, there is no one-size-fits-all therapeutic solution. In recognition of this, the feeding and swallowing program at Sioux Falls-based LifeScape, is multidisciplinary, involving the skills and expertise of speech and language pathologists, occupational therapists, and child psychologists to address individual problems from every angle. In some cases, a dietician may even be called in to help.

 “Our staff are trained in a variety of approaches and are typically pulling pieces from several approaches to customize therapy for each patient,” explains Johnke.

Hewitt and Carrier-Damon are among seven speech therapists at LifeScape who concentrate much of their time on feeding and swallowing issues. Although most of these issues occurs in babies and toddlers, the team also works with older children and even young adults using a range of cutting edge techniques such as VitalStim, Beckman Oral Motor, and Sensory Oral Sequential (SOS).

“I think people can get stuck in doing things one way and, when things don’t get better, they just keep doing it,” says Carrier-Damon. “No one approach is the right way to manage feeding and swallowing issues. I think we do a good job of finding what works.”

Specialized Approaches to Dysphagia

One approach that has proven helpful for many children with dysphagia is VitalStim, a specialized form of neuromuscular electrical stimulation designed to help strengthen weak swallowing muscles. Carrier-Damon, Hewitt and three other LifeScape therapists are trained in the technique, which involves the use of a hand-held device with lead wires connected to muscles on the child’s neck, head and/or cheeks.

Like a number of feeding and swallowing therapies, the process typically starts with a parent questionnaire and often includes a video swallow study to pinpoint the source of the problem. Then, while the child eats, the therapist gradually increases the intensity of the electrical impulse while listening for an audible swallow to indicate maximum intensity.

Inpatients going through VitalStim therapy at LifeScape may see marked improvement in their swallowing problems within 3 weeks to 3 months of once or twice daily sessions. For outpatients, who may only be able to attend therapy sessions a few times a week, it can take up to 4 months to see results.

Sequential Oral Sensory is another highly-specialized approach to managing pediatric dysphagia by gradually increasing a food-averse child’s comfort level with certain foods. Currently, only LifeScape has therapists certified to offer the technique in South Dakota. Hewitt is one of them.

“This is a very structured form of therapy,” explains Hewitt. “I start by evaluating how the child is sitting at the table. Is he positioned correctly? Then we would bring out foods one at a time. I’m looking at things like, can the child visually handle having the food at the table? Can they pick it up and play with it? Can they tolerate it on their hands?”

If I child can tolerate a “hated” food at the table or even on her hands, the next step would be to try it on the tongue. Hewitt evaluates the child’s oral-motor skills to determine if appropriate chewing is occurring and whether or not the child can manipulate food in the mouth.

Beckman Oral Motor therapy, another approach to pediatric dysphagia used at LifeScape, is an oral motor technique that involves a series of manipulations of the lips, face, cheeks and neck. The goal is to increase functional response to pressure and movement, and to allow for greater strength and control of the muscles that move the lips, cheeks, jaw and tongue. 

Often, therapists use a combination of these approaches and others, along with plenty of positive reinforcement and parental support, to encourage children to try new things, push themselves, and learn to embrace and even enjoy their mealtimes.

Meeting Patients Where They Are

Beyond the specific therapies used to address pediatric dysphagia, Johnke says the most important factor in success is a willingness to work with patients and families to develop a therapeutic plan that both meets their needs and considers their lives.

“For instance, if someone lives far away and can only come once every other week, we will put as much into developing a home program as possible so that they can continue to progress,” says Johnke. “On the other hand, if we need to see them intensively over just a few weeks, we can do that, too. We use the tools that are most appropriate for each patient, recognizing that no two patients are identical.”

Feeding research suggests - and LifeScape’s experience shows - that almost all children with feeding problems will benefit from some type of therapy and Carrier-Damon says the medical community is becoming more willing to address the problem. “The bulk of my patients are referrals from physicians, but I think patients have had something to do with that,” she says. “Now with social media, people are seeing the successes that their friends have had with feeding therapy are are asking their doctors to refer them.”

For many children and their families, therapy means that mealtimes are no longer frustrating and tear-filled. Picky eaters have broadened their diets and become physically healthier and parents have learned how to more effectively reinforce better eating habits. Even children who were never expected to eat orally are eating and drinking regular diets after spending time in therapy for their dysphagia at LifeScape.

“It is so important for the child emotionally, socially, and nutritionally and it’s really important for the family,” says Hewitt. “This is important for development in general. We want eating to be a happy and fun time.”

When to Refer? 

Consider recommending an evaluation in cases such as

-        A baby who is not eating at least soft solid food by 12 months

-        The “picky” eater who consumes only a few specific foods

-        A toddler or child who refuses to eat from certain food groups

-        Any child with chewing problems

-        A child with difficulty swallowing liquids