Caregiving Corner

Released February 22, 2022

The MWSF Community Advisory Board would like to share some age-based advice with our community:


  • It is important to enroll in Early Intervention Services as soon as possible
  • Connect with all the different types of Medical Professionals as soon as possible to develop a responsive Care Team: Primary Care Physician, Developmental Pediatrician, Physiatrist or Pediatrician, Cardiologist, Neurologist, Occupational Therapist and/or Physical Therapist, and Gastroenterologist. Some families may want to add a Naturopathic doctor if they are interested in natural and CDB options. See
  • Learn about the different types of formulas – some have extra calories for underweight infants
  • Many MWS infants are underweight and small, be sure to have a copy of the MWS Growth Chart
  • Don’t be afraid to find a new doctor if your current doctor is not making needed referrals (for example, handicap placards and wheelchairs, etc.). Usually this is the pediatrician, some families sign up for Complex Care services
  • The ARC provides many resources, including information on local birth-to-3 services. Click on “find a local chapter” to learn about services in your state.
  • Some families prefer to use specialists that all work with the same hospital, but other families find the specialists that they like the best and often receive care at multiple hospitals.
  • Often, children with MWS will see their specialists more often than their pediatricians.
  • Ask your physicians if you can use the back door so your child is not exposed to sick children in the waiting room.

First 2 years

  • Many children with MWS are in and out of the hospital many times during the first 2 years for various procedures and surgeries. For many MWS families, these greatly reduce after the first 2 years.
  • Seizures are a main concern for MWS families. For information see the MWSF Youtube channel for a recording of a seminar: Epilepsy and Seizures in Mowat-Wilson Syndrome

Starting School

  • Many MWS parents experience a lot of anxiety when preparing to send their children to school
  • The very first IEP meeting is crucial. Ask for a family advocate to help you during the meeting. Some school districts only provide support if you ask for it – learn to advocate for your child.
  • Families can call the Board of Developmental Delays to receive help. In some areas, this is called “Healthy Grow”.
  • Some families benefit greatly from having therapy services provided in school, on consult, and out-patient.
  • Ask for a one-on-one aide in school if needed. Many parents have learned that it is crucial to ask for these services at the first IEP meeting. Once a child has been in school for a while, it may be difficult to get new services approved.