Medical / Dietary Needs

What you need to know

The list of possible medical problems in Rett/Rett variant or MECP2 related disorders can be quite extensive. However, each individual usually has only some of these problems. Also, the severity of any one of these medical problems varies widely.  Therefore, it is important to ask the parents about the medical issues for their child.

Treatment is mainly symptomatic and multidisciplinary, and should include psychosocial support for the family.

A dietician may be involved.

  • Increased fluid intake and a high fiber diet can help prevent acute intestinal obstruction. Miralax and stool softeners may be used.
  • Anti-reflux agents, smaller amounts, thickened feedings, and positioning can help with decreasing gastrointestinal reflux.
  • Bone loss may occur so careful attention to nutrition and calcium intake is important.
  • Some children may use a ketogenic diet (a high-fat, adequate-protien, low carbohydrate diet) or L-carnitine supplements.
  • Be aware, or ask a parent, if the child has a medical alert bracelet.

What you can do

  • Report any change in seizure activity to the parents. Follow school protocols when seizures do occur.
  • Ensure a yearly check-up in the child’s Medical Home. 
  • Ensure immunization records are up to date. Most children with Rett/Rett variant or MECP2 related disorders can receive live virus vaccinations. Record types of vaccinations the child receives.
  • Support good hand washing to reduce the spread of viruses.
  • Notify parents of changes in energy level.
  • Be aware of any changes in behavior or mood. Notify the parents.
  • Be aware of any changes in academic performance.  Contact parents.
  • Be an advocate if the child uses communication supports so that the child can communicate effectively throughout the day. This may include alternative and augmentative communication systems or devices.
  • Ensure child is having periodic cardiac evaluations to monitor for changes in heart rhythms.
  • Dietary: GERD (gastroesophageal reflux disease) may occur. Talk with the parents about particular foods that might be triggers and avoid those foods.  If the child has more vomiting or reflux than normal, contact the parents so that the cause can be determined.