Constipation and Gastroesophageal Reflux Disease (GERD)
Constipation and gastresophageal reflux (acid coming from the stomach up into the throat, which causes heartburn) are the two most common gastrointestinal conditions seen in people living with Duchenne. Because constipation is a frequent complaint, and is often underreported, it is important to discuss bowel habits with your care team. Management of constipation can help avoid future complications that impact the bowel due to long-standing constipation.
- Laxatives and other medicines can be useful. Ask your primary care provider or neuromuscular team which laxatives are most appropriate for you and how long you should take them. All laxatives are not the same
- It is important that you are drinking enough fluid every day. Increasing fibre may make symptoms worse especially if fluids are not increased, so make sure that you review your dietary and fluid intake with a dietician at each visit, especially if you are having constipation
- Gastroesophageal reflux is typically treated with medicines that suppress gastric acids; these are commonly prescribed for people on steroid therapy or oral bisphosphonates
- Oral care is an important area for everyone, especially in those using bisphosphonates for bone loss. Expert recommendations for oral care are outlined in Box 5
- With jaw weakness, there may be fatigue with chewing, that can result in decreased caloric intake
Box 5. Oral Care Recommendations
- People living with Duchenne should, starting at a young age, see a dentist with extensive experience and detailed knowledge of the disease. The dentist’s mission should be to strive for high-quality treatment, oral health, and wellbeing and to function as a resource in your home community. This dentist should be aware of the specific differences in dental and skeletal development in people with Duchenne and collaborate with a well-informed and experienced orthodontist
- Oral and dental care are based on prophylactic measures with a view to maintaining good oral and dental hygiene
- Teaching parents and other caregivers how to brush teeth of another person is important especially in Duchenne where the large tongue and sometimes limited mouth opening makes it more difficult
- Individually adapted assistive devices and technical aids for oral hygiene are of particular importance when the muscular strength of the hands, arms, jaw, mouth, and neck begin to decrease or if contractures in the jaw are present
Box 6. Speech and Language Management - The Details
- There are well-documented patterns of speech and language deficit in Duchenne, including problems with language development, short-term verbal memory, and phonological processing, as well as a risk for impaired IQ and specific learning disorders
- These do not affect all people living with Duchenne, but should be considered and interventions implemented if they are present
- Referral to a speech and language therapist (SALT) for speech and language evaluation and treatment is necessary if problems with speech and language are suspected
- Exercises for the muscles involved in speech and articulation may be appropriate and necessary for children with speech and language difficulties, as well as for older individuals who have weakening oral muscle strength and/or impaired speech intelligibility
- Compensatory strategies, voice exercises, and speech amplifications are appropriate if it becomes difficult to understand the person living with Duchenne due to problems with respiratory support
- Voice output communication aid (VOCA) assessment may be appropriate at any age if speech output is limited
- Language problems may lead to difficulties in school, but can be helped with proper assessment and intervention
