What you need to know about school after epilepsy surgery

  • Most children after epilepsy surgery require special education.

  • It’s important to understand the IEP process after epilepsy surgery.
  • Our free school training can help the school team understand the educational impact of your child’s epilepsy surgery.

  • It can take many years to see cognitive improvements after epilepsy surgery. Have patience!

How to help your child learn after epilepsy surgery

What the research says about IQ and epilepsy surgery

Intellectual quotient, or IQ, measures general intellectual abilities. A person’s IQ is a numerical score that you get after taking standardized tests designed to assess cognitive abilities.

These tests evaluate problem-solving skills, logical reasoning, and the ability to grasp complex concepts. Though the IQ test offers a general indication of intellectual capabilities, it is not a comprehensive measure of a child’s overall intelligence or potential.

Typically, average IQ scores range from 85 to 115.

IQ and epilepsy

Studies show that children with epilepsy display a wide range of IQ scores.

  • 40% of these children present with significant cognitive problems, including possible intellectual disability.
  • Three out of four children have academic issues and 42% show underachievement based on their IQ.

IQ after pediatric epilepsy surgery

There are several potential cognitive outcomes after epilepsy surgery:

  1. No change: The child continues to develop as before, but due to normal age-related progress in the general population, the gap between the child and typical development may increase.
  2. Deficit loss: A decline in IQ and academic skills is observed post-surgery.
  3. Cognitive slowing halts: Post-surgery, the child’s development pace aligns more with typical children, maintaining their IQ scores.
  4. Accelerated development: The child develops faster than peers, narrowing the gap.

Various studies show little change in IQ or academic skills 1-2 years after surgery. That’s why it’s important to be patient with the child’s progress in school. It can take time to see improvements the first few years after surgery.

More recent studies indicate improvements in IQ in 30-40% of children. Children after hemispheric surgery, for example, have better cognitive outcomes if:

  • Their seizures are under control
  • The other side of their brain looks normal
  • They had a higher IQ before the surgery
  • They had epilepsy for a shorter time before surgery
  • They were older when they had the surgery

Studies focused on hemispherectomies indicate that the majority achieve seizure control, and 29% showed improvements in IQ.

Current research is inconsistent. Follow-up periods vary and different tests are used from study to study. This means that we still cannot predict a child’s IQ after surgery, especially after big surgeries like hemispheric surgery, posterior quadrant resection, and lobectomies.

Although there’s limited high-quality data available, the majority of the children seem to have stable or improved IQs post-surgery, and seizure control is often associated with better outcomes.

It’s important that we do more research, especially concerning academic skills, as existing studies only suggest what is possible post-surgery but don’t necessarily demonstrate the surgery’s impact.

Academic Achievement and IQ

Klajdi Puka, PhD, is a researcher with special interest in academics and cognition after pediatric epilepsy surgery. Here, he gives a presentation summarizing what the current research shows us abut academic achievement and IQ after epilepsy surgery, especially large surgeries like hemispherectomy.

Memory After Resective Surgery In Children

Mary Lou Smith, PhD, Professor of Psychology at the University of Toronto, clinical neuropsychologist at Sick Kids Hospital in Toronto, Canada, and member of the neuropsychology task force of the International League Against Epilepsy, discusses the state of research on memory after large resective/disconnective pediatric epilepsy surgery.

Cognitive Outcomes After Resective/Disconnective Epilepsy Surgery

Dr. Ahsan Valappil, clinical neurologist at the Cleveland Clinic, discusses the state of research on cognitive outcomes after large disconnective/resective pediatric epilepsy surgeries.

Resources by surgery

Hemispheric Surgery

Vision

Gross and Fine Motor

Hearing and Listening

Medical

TPO Disconnections/Resection

Vision

Hearing and Listening

Occipital Lobectomy

Vision

Other Resources

The following guides, products, or information will help you understand the various challenges a child may have after epilepsy surgery.

Vision

Homonymous Hemianopsia Simulators – from Vision Rehabilitative Services, LLC. These inexpensive simulators will help the educational team generally understand the visual field cut after hemispherectomy, hemispherotomy, hemidecortication, occipital lobectomy, temporo-parietal-occipital disconnection, and any multi-lobar resection or disconnection which includes the occipital lobe.

PLEASE NOTE: These glasses do NOT follow the movement of the eyeballs and are helpful only for a broad understanding of orientation and mobility challenges. They should NOT be used to understand the visual field deficit as it relates to reading.

Rummel Hemianopsia Buttons™ – These simple buttons remind others that your student is unable to see in their blind field. An inexpensive reminder for anyone working with a child after hemispherectomy, hemispherotomy, hemidecortication, occipital lobectomy, temporo-parietal-occipital disconnection, and any multi-lobar resection or disconnection which includes the occipital lobe.

Rummel Hemianopsia Guides™ – Reading guides that remind your student to read to the end of the line (for right hemianopsia) and where to begin at the next line (for left hemianopsia).

Seizures

Seizure Action PlanFrom the Epilepsy Foundation. It is important that educators understand that epilepsy surgery does not have a 100% success rate. Children may have a seizure at any time after epilepsy surgery. A good seizure action plan is critical for the team to know and understand.

Legal Rights of Children With Epilepsy In School and Child Care – An excellent overview of the legal rights of children with epilepsy in school and child care, including an in-depth discussion of the Individuals with Disabilities in Education Act and Individual Education Plans, the Rehabilitation Act and 504 Plans, and administration of rescue medication in various educational and child care settings.