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Oral Motor Problem: Information and Helping Tips
Choking
Choking, or dysphagia, is an expected complication of HD. While there are no medications that can prevent dysphagia or improve swallowing, a speech pathologists can help a parent or child to understand what causes this swallowing problem and can often provide simple practical tips to help minimize choking. A chin-tuck maneuver, for instance, can help to direct food into the esophagus (extending the head backwards, as actors are often seen doing in soda or beer commercials opens up the airway and makes choking more likely!). Alternating solids and liquids can help to clear the mouth and throat of food particles that were not completely slow look first time. Using a straw or a cover cop can help to avoid spills and limit the amount of liquid taking with each swallow, thereby reducing the risk of choking. Minimizing distractions when the child is eating can also be helpful.
"She can still feed herself certain foods, but prefers that a family member feed her. She is totally dependent on family for any and all activities. All of her friends have deserted her. Her parents have no social life outside the nursing home."
The speech pathologist can also suggest ways to change the texture of the diet to adapt to a particular childs dysphagia. For instance, commercially available powders can be added in liquids that often cause choking, to make them thicker and easier for the tongue to push to the back of the throat. Family members can feel more comfortable around a person who has choking problems if they will learn the Heimlich maneuver, a method for expelling particles that are blocking the airway. Local hospitals, the Red Cross, or emergency service providers may sponsor training courses for this and other first aid procedures
Tips to minimize choking
- Chin-tuck maneuver
- Alternate solids and liquids
- Use a straw or covered cup
- Minimize distractions
Feeding Tubes
Some children with HD develop such severe dysphagia that they are unable to maintain their weight or nutritional needs, or developed real-time pneumonia from food or saliva that end up in the lungs. When this happens, the family should consider the use of a feeding gastrostomy tube.
Many people have very strong feelings about the use of a feeding tube. While some say it only prolongs the later stages of a degenerative disease and that they cannot imagine using such "artificial" means of providing food, others say that their child should be able to live comfortably without the discomfort or indignity of hunger and choking and that a simple, though artificial means, by providing nutrition is desirable.
The decision about a feeding tube should be a thoughtful and careful one. What works best for one person or family may not be the right decision for another person or family. The physician or dietitian can provide more information about the types of feeding tubes that can be used, how they are inserted, what the risks and potential complications are, and how nutritional supplements are given through such a tube.
It is helpful to consider and discuss issues early, before crisis situation arises. Parents or other caregivers do not need to wait for the physician to bring up the topic at a clinical visits, but can include it on their list of questions or concerns to discuss at any time.
Nutrition
Most people who have HD experience significant weight loss as the disease progresses. Early attention to nutrition is an important part of the management all of HD, as it can help to slow down or minimize weight loss. Access to high quality foods with extra calories and protein and adequate supplies of calcium and vitamins are important.
For a child who has difficulty maintaining weight, supplementation with high calorie snacks is often appropriate. If prepared supplements are too expensive, it is recommended that affected individuals substitute cream for milk (for instance, on cereal), use proteins/calorie additives such as Carnation Instant Breakfast , use milkshakes or ice cream for snacks and eat high carbohydrate foods such as pastas. As chewing or swallowing difficulties lead to changes in food types or textures, consultation with a dietitian may be helpful to ensure that the diet still includes enough calories, protein, and vitamins.
Many adults with HD develop strong preferences, or even obsessions, for non-nutritious items such as soda, candy, coffee or cigarettes. The parents can try to control this problem in a child with HD before it begins by making only nutritious food available for snacks. Giving a preferred or special food to a child in later stages of HD may offer a real source of pleasure or social reward for a child who may no longer be able to express his desire or needs.
Oral Hygiene
Oral hygiene is particularly important for people who have HD. Eating and speaking are two of the few pleasures left when one looses the ability to walk, go to school or work, interact with peers. Loosing teeth or developing painful abscesses may make a person less able to speak and more likely to choke and may even lead to our refusal to eat.
Early and aggressive attention to oral hygiene is necessary. Some caregivers have found that brushing with mouthwash is easier and better tolerated then using toothpaste; others have found that electric toothbrush, introduced early, is helpful. If the child cannot cooperate for routine dental visits, it is appropriate to seek out a dentist who specializes in or has been willing to treat children with disabilities.
Communication
Children who have difficulty swallowing properly are very likely to have speech impairments as well, as the same lip, tongue and throat muscles are involved in both processes. The speech pathologist should evaluate communication as well as swallowing, even if there are no apparent problems.
Because dementia will impair the childs ability to learn how to use assistive devices, such as a computer or a communication board later in the disease, introducing devices or communication strategies, before they are absolutely necessary, is key to maintaining good communication for as long as possible. A variety of assistive devices and strategies are available. Each child must be assessed individually to find a device that works best for him, based on age, cognitive skills, motor skills, and the situation in which communication is needed.
Because the disease is progressive, a device that works well for them years ago may not be as useful today. The family and the speech therapist must be willing to reevaluate the child needs annually.
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