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The Marathon of Dysphagia

The Marathon of Pediatric Dysphagia

Holiday gatherings, hanging out with friends, going on almost any outing usually involves eating and drinking. It is rare that food/drink is not associated with social gatherings. Eating and drinking is not only vital to the health of our bodies, but also the health of our minds. If you have food allergies, dysphagia, or any number of GI conditions, you know how challenging social situations can be when they involve food. While most people have heard of allergies and GI conditions like Celiac disease, most have never heard of dysphagia (difficulty managing and swallowing foods or liquids). Nearly 1 out of 100 children aged 3-17 have dysphagia and 1 in 75 people will have dysphagia at some point in their lives.

My son is a preemie and has had dysphagia his entire life, although we weren’t aware of it until he turned 3. Many symptoms can be similar to pediatric dysphagia symptoms, or they exist together—such as GERD. For adults, one of the primary symptoms of dysphagia is coughing after eating or drinking. I’m an Occupational Therapist, and worked with adults for almost 9 years. If one of my patient’s coughed after eating or drinking, we referred immediately to our Speech Language Pathologist for assessment of dysphagia. Dysphagia is pretty common in nursing homes. But, coughing after eating and drinking is not a given in pediatrics. Many of them are silent aspirators, especially as infants. That was the case with our son. Common symptoms in pediatrics include:

  • back arching,

  • breathing difficulties around feedings (increased respiratory rate, change in color around lips, heart rate changes, apnea, frequent stopping during feedings),

  • coughing or choking,

  • crying during mealtimes,

  • decreased responsiveness during mealtimes/bottles,

  • difficulty chewing and managing foods and drinks,

  • refusing foods or drinks (turning away, grimacing, finger splaying, facial flushing),

  • congestion after meals,

  • gagging,

  • frequent respiratory illnesses,

  • noisy or wet vocal quality,

  • taking longer to finish meals or bottles than expected for age,

  • vomiting,

  • over stuffing, taking tiny bites, delayed swallowing of foods,

  • foods/liquid loss from lips

(ASHA pediatric dysphagia).

My son had most of those symptoms. He had projectile vomiting, growth failure (slow growth,

falling off the curve), fussing/refusing bottles, unable to latch, had a feeding tube in the NICU, and refused most solid foods. He continues to have difficulties with harder to chew foods, mixed texture foods (particularly juicy foods) and thin liquids. He now coughs when things “go down the wrong way”. He is now 5 and gets all of his liquids (including medications) thickened. He can’t have regular ice cream, popsicles, slushies—many of the foods we all have fond memories of in childhood. He knows that he needs his “special water” and ice cream thickened. But when children with dysphagia are toddlers, it is often very challenging to ensure they are only given what is safe for them to manage. Daycares, schools, babysitters, and family members need to all be aware of the limitations and trained on dysphagia and the child’s care plan. The consequences of not following include pneumonia, more permanent damage to already inflamed lungs, or even death.

Many children, including my son, have Chronic Lung Disease as a result of aspiration or micro aspirations as well as other medical complexities. Inhalers, steroids, antibiotics, nebulizers, and even oxygen are common parts of their lives. They usually have a team of experts following them including ENT, pulmonology, GI, and SLPs. Respiratory symptoms and fevers are common (my son’s normal temperature is in the 99s). Every cold has the potential for quickly turning into pneumonia. These children are experts at having their vital signs taken, getting labs drawn, and taking medications. They are used to not being able to keep up with their peers and/or not being able to participate in all physical activities that peers do—their lungs have a hard time keeping up due to the chronic inflammation.

There are many causes to pediatric dysphagia including neurological causes, structural causes, and genetic causes, but many people never find out the cause. Kids can have surgeries to improve the structural causes, or they many need to get all or part of their nutrition through feeding tubes. Some kids need thickened liquids or foods pureed. Some kids just need to learn strategies to help swallow, and are able to eat a regular diet. Some kids “outgrow” dysphagia, and others learn to adapt.

As I look back on my son’s journey, I have some guilt. I wonder how his life would be

different if we had caught it sooner? Would he handle colds better? Would he be on less medications? Would his quality of life be better because he could run, ride a bike, and play without getting tired so quickly? If only I knew then what I know now…Which is part of the reason I share our story. But, I look at my son, and he truly takes it all in stride. He still laughs, and plays, and loves, and grows. He enjoys many foods and drinks, just with modifications that have lessened in time as he has learned to adapt. My son lives an exceptional life, despite his challenges. This has not been an easy journey for him, or for us as parents, and we continue to navigate many challenges. But, with time, we’ve learned how to navigate it with fewer disasters and much more grace—grace for ourselves and others. The quest for answers continues, but we have hit our stride in the marathon. It doesn’t mean we don’t still have challenges, but we have learned strategies that work for us, for the moment. Those strategies will continue to change. I think that is how life is for all of us—constantly changing, constantly learning, and constantly adapting. We get better with time, practice, and mistakes. So, for the families who are just starting on this journey, I remember how difficult and overwhelming it all felt (and still does some days). But, it does get better. Just put one foot in the front of the other and don’t give up.


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