What you need to know
Medical Needs
The severity of any one of the possible medical conditions varies widely between individuals. Therefore it is important to ask the parents about their child’s medical issues. Children often have problems with breathing swallowing, eating, drinking, and temperature control.
School age children with CHARGE will have multiple doctors and specialist visits to monitor medical conditions.
Regular neurodevelopmental and developmental/behavioral evaluations may be helpful.
Dietary Needs
- Feeding and swallowing difficulties
- The causes and severity vary greatly
- Swallowing mechanism may be affected
- May be due to abnormalities of the cranial nerve
- May be secondary to weakness and motor planning disorders
- Sensory difficulties can contribute to feeding and swallowing challenges
- Tactile defensiveness
- Oral hyposensitivity
What you can do
- 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.
- Work with parents to ensure the child is fed in a way that is best for the child.
- If there are seizures, make sure you have a seizure care plan.