Dysphagia, or difficulty swallowing, effects many people with Duchenne. Complaints of “something stuck in my throat” are not uncommon and symptoms may progress. Until now, there has been little guidance available for clinicians to manage dysphagia and improve feeding for people with Duchenne.
Signs there may be problems swallowing include:
- Taking longer than 30 minutes to eat a meal
- Being extremely tired during or after meals
- Drooling and dropping food from the mouth
- Keeping food in the side of the mouth instead of swallowing it
- Coughing, choking, or gagging often
- Making a gurgling sounds while eating or drinking, or after eating or drinking
- More trouble than usual breathing
- Has had aspiration pneumonia or an unexplained fever
Dysphagia in Duchenne
Dysphagia present in Duchenne is a result of progressive muscle weakness and accompanies solid rather than liquid intake. Dysphagia usually increases during young adulthood and may be due to fatigue (sleepiness) or aspiration (drawing breath) with eating.
Swallowing problems (dysphagia) can cause dehydration, weight loss, and malnutrition. They can also cause breathing difficulty when food or water goes down the breathing tube (trachea) and into the lungs, which can lead to a lung infection (aspiration pneumonia).
Management of Dysphagia
A speech language pathologist (SLP) should do a clinical swallowing exam when there are signs of swallowing problems. Sometimes, moving X-rays or swallow studies are needed to watch food or liquid move from the mouth to the stomach. These studies allow your doctor to evaluate whether you are aspirating while eating.
When should you have a swallowing evaluation?
- In the late non-ambulatory stage or earlier if symptomatic
- If you have an episode of chest infection along with symptoms of dysphagia
Speech therapy interventions:
- Change position of head/neck
- Change consistency of the food (avoid: thin liquids, dry/crumbly foods, raw food)
- Eat multiple small meals, rather than three larger meals
- Consider: straws, cups, smaller spoons, etc.
- If speech therapy interventions are not successful, it may be time to discuss a gastrostomy tube (feeding tube) with your doctor.
Algorithm (plan of care) for diagnosing and managing dysphagia in Duchenne
The management of dysphagia in Duchenne (caused by weakened oropharyngeal muscles in the mouth) is different from the management of other causes of dysphagia. For this reason, it is important to be evaluated by a speech and language pathologist (SLP) who has experience with Duchenne. While other forms of dysphagia may be managed by thickening liquids, Duchenne is actually managed by either thinning the consistency of foods (or eating less solid food) or by following food that is eaten with at least three swallows of water. This article presents a clear algorithm (step by step plan of care) to diagnose and manage dysphagia in patients with Duchenne. Although this article is quite technical, it may be helpful to read and share with your neuromuscular care team.