Feeding and swallowing may become difficult for people with A- T as they get older.
Primary goals for feeding and swallowing are to have safe, adequate, and enjoyable mealtimes.
Involuntary movements may make feeding difficult or messy, and may excessively prolong mealtimes. It may be easier to self-feed with fingers than to use utensils. Drinking from a closed container with a straw may be easier than drinking from an open cup.
Caregivers may need to prepare foods into bite-sized pieces to facilitate self-feeding. They may need to assist with feeding, when self-feeding is difficult, fatigue interferes with feeding, or mealtimes become too long. In general, meals should be completed within approximately 30 minutes. Longer meals may be stressful, interfere with other daily activities, and limit the intake of necessary liquids and nutrients.
Swallowing Problems and Aspiration
- Swallowing problems (dysphagia) are common and typically become apparent after the age of 10 years. Dysphagia occurs because neurological changes of A-T interfere with the coordination of mouth and throat (pharynx) movements that are needed for safe and efficient swallowing.
- Coordination problems involving the mouth may make chewing difficult and increase the duration of meals. It takes more effort to swallow foods that require chewing (e.g., raw celery) than foods that are ready to be swallowed as soon as they enter the mouth (e.g., pudding).
- Coordination problems involving the pharynx may cause liquid, food, and saliva to be inhaled into the airway (aspiration).
- Most people cough when they aspirate, but people with dysphagia may not cough (silent aspiration). The absence of cough may make it difficult to suspect that there are difficulties swallowing.
- Aspiration, particularly silent aspiration, is common in people with A-T over the age of 10 years.
- The failure to cough may interfere with clearing aspirated substances from the airway.
Warning Signs of a Swallowing Problem
- Choking or coughing when eating or drinking
- Poor weight gain (during ages of expected growth) or unexplained weight loss at any age
- Excessive drooling (beyond the ages of teething)
- Mealtimes longer than 40 minutes on a regular basis
- Refusing or having difficulty with foods or drinks previously enjoyed
- Chewing problems
- Increases in the number of otherwise unexplained lung infections, particularly in people with other signs of swallowing problems
Oral intake may be aided by teaching persons with A-T how to drink, chew, and swallow more safely. Treatments for swallowing problems should be determined following evaluation by a speech-language pathologist. Dieticians may help treat nutrition problems by recommending dietary modifications, including high calorie foods or food supplements.
A feeding (gastrostomy) tube is recommended when any of the following occur:
- A child cannot eat or drink enough to grow OR a person of any age cannot eat enough to maintain weight
- Aspiration (a condition in which food or liquid is breathed into the airways), particularly silent aspiration, is problematic
- Mealtimes are stressful or too long, or interfere with other activities
Feeding tubes can decrease the risk of aspiration by helping persons avoid liquids or foods that are difficult to swallow. Gastrostomy tubes can also help provide needed calories and nutrition without the stress and time commitment of prolonged meals. Feeding tubes do not prevent people from eating by mouth. Once a tube is in place, the general goal should be to maintain weight at the 10-25th percentile. Re-feeding immediately after gastrostomy tube placement should be done gradually to optimize acceptance and to minimize the risk of aspiration from gastroesophageal reflux.