What are the International Standard of Care Committee recommendations for dysphagia screening and assessment in patients with congenital muscular dystrophy?

Updated: Aug 17, 2020
  • Author: Twee T Do, MD; Chief Editor: Jeffrey D Thomson, MD  more...
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The International Standard of Care Committee consensus recommends feeding and swallowing problems be regularly screened during routine clinic visits. Key screening issues are the following [76] :

  • Length of mealtimes - More than 30 minutes per meal is considered to be prolonged
  • Frequency of meals - Increased meal frequency may be needed and clinicians need to ensure that families can carry this out without difficulties
  • Frequency of pulmonary infections
  • Difficulties chewing; choking and coughing
  • Food texture modification
  • Family stress or enjoyment of mealtimes for the child and parents
  • The ability to feed independently
  • Position for feeding

Identification of difficulties in the above areas warrants assessment by a specialist qualified in feeding and swallowing evaluation. Assessment should include the following:

  • Orofacial examination
  • Observation and evaluation of feeding and swallowing skills
  • Observation and evaluation of seating and positioning.

The use of a videofluoroscopic swallow assessment to objectively assess the swallow should be done by speech and language specialists. Endoscopic evaluation of swallow is an underused assessment in pediatrics, specifically in this population.

Additional consensus recommendations include the following [76] :

  • Patients with muscle weakness are prone to gastroesophageal reflux and delayed gastric emptying; treatment with an H2-antagonist/proton pump inhibitor with or without a prokinetic agent can be indicated
  • Speech and swallow evaluation should be considered for patients with symptoms of aspiration such as cough, choking, difficulty swallowing, poor feeding, or failure to thrive; thickened feeds or an alternate method of feeding are needed
  • If symptomatic management is insufficient, the use of tube feeding has to be considered
  • Nasogastric tube feeding should be reserved for short-term use such as before and after surgery or during acute illness
  • Gastrostomy or jejunostomy is the treatment of choice for long-term enteral feeding

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