LOTS Swallowing Difficulties - Dysphagia
What is the swallowing process?
What are problems caused by dysphagia?
People with Late Onset Tay-Sachs, often have problems swallowing because of weakened or damaged muscles and nerves used for swallowing, making it difficult to swallow. Some affected individuals may have trouble swallowing liquids, solid foods, or saliva, or in extreme cases they may be completely unable to swallow. Often, dysphagia makes it difficult to take in enough calories and fluids to nourish the body, leading to malnutrition and dehydration. If food is not swallowed correctly, one can develop “aspiration”, pneumonia. All of these can lead to anxiety, depression and isolation.
What is the swallowing process?
Swallowing is a very complex process. People swallow an average of 580 times a day. There are about 50 pairs of muscles and many nerves that all must work properly to move food from the mouth to the stomach. This happens in three stages.
First, the tongue moves the food around in the mouth for chewing. Chewing grinds the food the right size to swallow and helps mix the food with saliva.
The second stage begins when the tongue pushes the food or liquid to the back of the mouth, which triggers a swallowing reflex that passes the food through the pharynx (the canal that connects the mouth with the esophagus). During this stage, the larynx (voice box) closes tightly and breathing stops to prevent food or liquid from entering the lungs. Problems in this stage can lead to aspiration and respiratory infection.
The third stage begins when food or liquid enters the esophagus, the canal that carries food and liquid to the stomach.
Dysphagia occurs when there is a problem with any part of the swallowing process. Weak tongue or cheek muscles may make it hard to move food around in the mouth for chewing. Food pieces that are too large for swallowing may enter the throat and block the passage of air. Other problems include not being able to start the swallowing reflex (a stimulus that allows food and liquids to move safely through the pharynx) because of problems in the central nervous system. Another difficulty can occur when weak throat muscles cannot move all of the food toward the stomach. Aspiration occurs when bits of food fall into the windpipe (trachea), which may result in a lung infection (aspiration pneumonia).
What are problems caused by dysphagia?
Someone who cannot swallow well may not be able to eat enough of the right foods to stay healthy or maintain an ideal weight.
If foods or liquids enter the windpipe of a person who has dysphagia, and stay there, they may enter the lungs, resulting in a serious infection (aspiration pneumonia)
Swallowing disorders may also include the development of a pocket outside the esophagus caused by weakness in the esophageal wall. This abnormal pocket traps some food being swallowed. While lying down or sleeping, a person may draw undigested food into the pharynx. The esophagus may be too narrow, causing food to stick. This food may prevent other food or even liquids from entering the stomach.
The following signs at mealtime may indicate swallowing problems:
- Coughing
- Choking
- Gurgly voice quality
- Wet sounding breathing
- Spillage of food or liquid from the mouth
- Frequent throat clearing
- Progressively slower rate of food intake
- Regurgitation of food through the mouth or nose after it has been swallowed*
- Food or liquid left in the mouth after a swallow
- Difficulty manipulating food or liquid in the mouth
- Frequent congestion*
- Frequent temperatures*
- Consistent or significant weight loss*
Signs marked * could be indicative of a serious and possibly unrelated medical condition and should be monitored by a physician.
Before the meal
- It may be helpful if the person with LOTS rests for one or two hours before mealtime.
- Create a calm and relaxed eating environment. Turn off the television and radio.
- Remember that anxiety makes choking worse, so try to keep the mood light and cheerful.
- The person with LOTS should sit in an accessible spot at the table, just in case choking occurs and a person has to quickly come to their aid.
- To conserve energy try eating several (4-6) smaller meals throughout a day rather than three large ones.
During the meal
- The person with LOTS should be sitting upright while eating, never in a reclining position.
- Avoid talking while eating/swallowing
- To reduce the risk of choking, the person with LOTS should angle their head down towards the plate.
- Use non-slip table mats.
- Use weighted utensils, such as plastic knives and forks. Resource to make heavier?
- Utensils with thick handles are easier to hold. Regular cutlery can be converted by slipping the handles into appropriate lengths of foam rubber tubing.
- Use eating aids, such as plate guards, to prevent food being spilled onto the table.
- A double-handled drinking cup with spout can make drinking more manageable. Alternatively, use a drinking straw secured into a plastic cup.
- A person with LOTS can take a long time to eat. It may help to reheat their meal at regular intervals.
- A plastic apron can protect clothes from food spillage.
- The person with LOTS should never try to drink while they have a mouthful of food - the contrasting texture can be confusing and prompt choking.
- The person with LOTS should never be rushed. Allow up to one hour per mealtime.
- The person with LOTS should remain sitting upright for about half an hour following a meal. Lying down too soon after eating increases the risk of reflux and possible choking.
- Eat slowly, pausing between bites and sips (for some people tapping the table with the spoon between bites helps them remember to go slower)
Size of bite/sip
- Small bites (1/2 tsp. or less) are usually easier.
- a small spoon may help you remember this
- cut all solid foods into small pieces
Some people find drinking from a straw easier than sipping from a cup (if a straw is easier, consider using a flexible one-way straw; if a cup is easier, consider using a "nosey" cup that is double handled and made of durable plastic).
Foods and liquids
- Soft, blended or pureed foods are generally easier to swallow. Avoid dry, tough and stringy foods.
- Thickened liquids (honey to milk-shake consistency) are generally easier to swallow. A commercial thickener can be purchased which allows you to thicken, any liquid to any consistency desired.
- Avoid acidic and spicy foods. If aspirated, these types of food are more likely to cause pneumonia.
- Start a food diary to keep track of what you ate I what strategies you tried and how easy/difficult it was to swallow.
(Note: the above are general suggestions; actual recommendations may vary from person-to-person. Check with a speech pathologist to help in devising the best "swallowing plan" for you or the one you are caring for.
There are different treatments for various types of dysphagia. First, doctors and speech-language pathologists who test for and treat swallowing disorders use a variety of tests that allow them to look at the parts of the swallowing mechanism. One test, called a fiber optic laryngoscopy, allows the doctor to look down the throat with a lighted tube. Other tests, including video fluoroscopy, which takes videotapes of a patient swallowing, and ultrasound, which produces images of internal body organs, can painlessly take pictures of various stages of swallowing.
Once the cause of the dysphagia is found, surgery or medication may help. If treating the cause of the dysphagia does not help, the doctor may have the patient see a speech-language pathologist who is trained in testing and treating swallowing disorders. The speech-language pathologist will test the person's ability to eat and drink and may teach the person new ways to swallow.
Treatment may involve muscle exercises to strengthen weak facial muscles or to improve coordination. For others, treatment may involve learning to eat in a special way. For example, some people may have to eat with their head turned to one side or looking straight ahead. Preparing food in a certain way or avoiding certain foods may help other people. For instance, those who cannot swallow liquids may need to add special thickeners to their drinks. Other people may have to avoid hot or cold foods or drinks.
For some, however, consuming foods and liquids by mouth may no longer be possible. These individuals must use other methods to nourish their bodies. Usually this involves a feeding system, such as a feeding tube, that bypasses the part of the swallowing mechanism that is not working normally.
If you have a swallowing problem, you may need to consult with an otolaryngologist (physician with special training in disorders of the ear, nose, and throat) or a speech-language pathologist trained in dysphagia.
For more information on dysphagia visit: http://www.nidcd.nih.gov/health/voice/dysph.asp