Swallowing Skills, Dysphagia, and Treatment

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While reading this, you will swallow multiple times without even realizing it. Thousands or more swallows occur each day while eating, drinking, swallowing saliva, and even while sleeping.  For something that seems so simple for most to do, it is incredibly challenging for those who lack the skills to do so safely. Swallowing is actually very complex and requires multiple systems to work together in harmony including the brain, respiratory system, and the muscular system. When one part of a system is not functioning appropriately, the entire process of chewing and swallowing is affected and the swallow can actually become dangerous.

Both of my children were born with dysphagia. Dysphagia means difficulty with swallowing. Many reasons can cause dysphagia including severe acid reflux and muscular weaknesses amongst others. Although a cause is not definitely determined for my children’s dysphagia, it is strongly suggested that acid reflux played a major part in affecting their ability to swallow. Acid reflux can cause damage to the esophagus by narrowing it, making swallowing more difficult.  Sometimes my daughter describes this as food feeling “stuck in her throat”. Acid reflux can also damage nerves inside of the throat and mouth, making it easier to choke, due to the lack of awareness of the location of the food. This was the case for my youngest daughter. Although there were obvious signs including, choking, gagging, and teary eyes, breathing quickly, and sweating during bottles, both of my girls were diagnosed officially from a swallow study.

The swallow study is done in a controlled environment, usually inside of a hospital. The child swallows a barium product with different textures of liquid, and food if age appropriate. Pending on the age of the child, different sizes of nipples may be used for the bottle. Several consistencies will also be used to see which your child can swallow safely and this is seen through an x-ray. Although it is very important to know this result, it is equally important to realize that this one time test can be inaccurate in that a child may safely swallow during the swallow study and still choke at home. A swallow study only reveals what is occurring at that very moment in time. A specific example I can share is that my oldest daughter “failed” her first swallow study in that she was choking and it revealed penetration. The second swallow study done a year later showed that she “passed”, however; she was still having multiple choking incidences at home. It is important to address what is occurring at home as well.

The stress of the test itself, can also reflect on the results. It is very difficult to replicate a safe environment when there are strange machines and people. When at all possible, it is a great idea to have your current therapist present at the swallow study to have someone familiar to your child.

There are so many options available to help a child who is choking on liquids and food.  Occupational and Speech Therapists can become an incredible asset. I was fortunate to find someone who did a home visit every so often to see the entire environment and seating position during mealtimes. Sometimes something as simple as altering a seating position, or buying a chair which adapts to your child’s needs, can improvement eating skills. A therapist would not know this valuable information without a video from home or a home visit.

While working with a speech therapist, I actually had to teach my daughter the skills required to chew. She was unable to feel the bolus of food within her mouth. I taught her where to put the food and how to chew it. I mostly lead by example and I would put the same food in my mouth, while completely exaggerating the concept of chewing. I made up songs about chewing and chewed to the beat of that song. I would tell her pending on the type of food, just how many times she should chew it before swallowing it safely.

There was a time when she would choke on every single bite and every single texture and thickness of food. Trying to get her to attempt a bite of food was challenging in and of itself. She needed a completely safe environment with the love and support from those around her, while feeling zero pressure to try. Pressure can be seen by giving rewards or even by using positive praise. Any type of pressure, even if it was the airplane sound everyone makes with pureed food on a spoon, would backfire for her. Behavioral based therapy would have been detrimental to her. We utilized S.O.S. therapy and it worked wonders for her with eating. She can now eat without choking with many textures of food. We are still currently working intensely on drinking skills.

I believe early intervention is absolutely necessary in addressing drinking and eating skills. I saw the differences in my two children as my youngest daughter’s early diagnosis made a tremendous difference in outcomes. Of course I cannot predict the future, so I do not know for certain that my oldest would not have needed a feeding tube if treated early, but I do know that she would have felt safer trying to drink if I would have known then what I know now. I am also very passionate about feeding therapy and I would never recommend behavioral or “forced” feeding therapy for any child who has a diagnosis of a swallowing disorder or other medical issues leading to food refusal. I sadly saw firsthand what a negative and monumental disaster this was for my eldest daughter. Swallowing skills need to be addressed in a safe environment with trust between the child, caregiver, and therapist. I will advocate this forever.

Never feel afraid to call your child’s doctor or make multiple visits if you truly feel something is wrong. I was brushed off as being a new mom and my concerns were not heard loudly enough. I started to believe that things must not be as bad as they seemed since I was not taken serious. Ironically enough, the things I was told to try to do for my daughter to get her to drink, were actually the exact opposite of what she needed. I was told to cut bigger holes in bottle nipples and that only made her choke and aspirate worse, because she indeed had dysphagia. I remember frantically driving to stores at all hours of the night to try to find new bottles and nipples. This is not normal. Always listen to your gut and never be afraid to advocate. The sooner you get answers, the quicker your child can receive the help needed to improve his/her drinking and eating skills.