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Medical and Dietary Needs

What you need to know

The severity of any one of the possible medical conditions varies widely between individuals. Therefore it is important to ask the parents about any specific medical issues that their child may have.

School-aged children with RSS may have multiple doctors and specialist visits to monitor medical conditions.

Regular neurodevelopmental and developmental/behavioral evaluations are important.

Individuals with RSS are at increased risk of hypoglycemia
  • Signs of hypoglycemia
    • Excessive sweating
    • Extreme crankiness
    • Lethargy
    • Paleness and shakiness
    • Poor coordination or odd speech
A child may also have gastrointestinal findings
  • Reflux
  • Food aversions
  • Constipation
  • The may have food aversions

What you can do

  • Treatment for hypoglycemia
    • Dietary supplementation
    • Frequent feedings
    • Complex carbohydrates
    • Snacking during the day
      • Allow child access to snacks at all times
    • May require a gastrostomy tube if child cannot maintain blood sugars consistently
  • Gastrointestinal issues
    •  Keep acid blocking medications in nurse’s office
    • Talk with the parents about particular foods that might be triggers for the reflux and avoid those foods if the child has more vomiting or reflux than normal.
    • If reflux is a current problem, avoid positions where the child’s head is below their stomach, such as reading while lying down.
    • They may possibly have pain from constipation.
  • Food Aversions
    • Individuals with RSS may require feeding therapy for food aversions
      • Speech Therapy
      • Occupational Therapy
  • A yearly check-up and studies as needed should occur in the child’s Medical Home. 
  • Be aware of any changes in behavior or mood that seem out of line with the situation and notify the parents.
  • It is important to be aware of any academic changes.  Contact parents when any differences are noticed.