Caregiving Corner

Released November 1, 2021

The MWSF Community Advisory Board would like to share some information about what MWS families can expect after a diagnosis

  • The decision to test children with MWS for COVID-19 is a difficult decision, and there are many factors to take into consideration. It is always best to ask one of your trusted physicians for their advice.
  • Many tests need to be conducted and many different types of healthcare providers need to be involved. Developing a comprehensive care team is vital
    • Metabolism Testing can help determine how medicines and nutrients are being metabolized – most often recommended by a Neurologist
    • A swallowing study might be helpful to identify swallowing issues
  • Many types of therapy may be helpful. These may be recommended or provided by an Occupational Therapist or Physical Therapist
    • Oral aversion therapy
    • Speech therapy
    • Feeding therapy
  • Many children with MWS require extensive bowel and gut management. A Gastroenterologist is a vital member of the care team. Children have varying levels of Hirschsprung’s disease.
  • Augmented communication supports can be extremely helpful. A Speech Therapist usually can help with this
  • Some children with MWS suffer from anxiety and difficulty sleeping
  • It is vital to be working with a Primary Care Physician, Developmental Pediatrician (most often associated with a Children’s hospital), Physiatrist or Pediatrician that is an active part of the care team and that you can trust. This will help in getting the necessary referrals for tests and therapies
  • Many types of durable medical equipment are helpful
    • Wheelchairs
    • Modified Strollers (generally must be referred to as a wheelchair for insurance to pay for it)
    • Augmentative Communication Devices – here is an interesting website about this: