What you need to know
The list of possible medical problems in TSC is quite extensive. However, each individual usually has only some of these problems. Also, the severity of any one of these medical problems varies widely in individuals. Therefore, it is important to ask the parents about the medical issues in their child.
School age children with TSC should have annual doctor and specialist visits to monitor medical conditions. A TS clinic can offer many specialists under one roof.
Recommended:
- Annual physical
- Annual eye exam
- Regular developmental assessment of children
- Watch for and treat seizures
- Early control of seizures can reduce behavioral consequences
- Seizures can be very subtle or unnoticeable
- For example, a student may stare for just seconds
No special diet is required for TSC, although a well-balanced diet is important. Some children may be on a ketogenic diet to help with seizure control.
Be aware, or ask a parent, if the child has a medical alert bracelet.
What you can do
- A yearly checkup and studies as needed should occur in the child’s Medical Home – their primary care office where care can be coordinated.
- Notify the parents of changes in child’s energy level or if there is pain.
- Be aware of changes in behavior or mood that aren't typical. Notify the parents.
- Be aware of academic, social, behavioral changes. Contact parents when changes are noticed. Be an advocate in obtaining sufficient speech and language support during school to communicate effectively throughout the day. This may include augmentative communication devices.
- Monitor child for possible seizures.
- Seizures can be very subtle or unnoticeable.
- For example, a student may stare for just seconds.