When should I ask to have my child referred for an epilepsy surgery evaluation?
You should ask to have your child referred to an epilepsy center for a surgical evaluation as soon as your child has met at least one of the four of the following criteria:
- failed two appropriate anti-epileptic drugs; OR
- has been diagnosed with a type of epilepsy that is known to be drug resistant; OR
- has a “catastrophic” epilepsy such as infantile spasms; OR
- the side effects of medications outweigh the risks of surgery.
Where should my child have an epilepsy surgery evaluation?
A surgical evaluation should be done at a facility that is a level 4 pediatric epilepsy center and with a team with substantial epilepsy surgery experience, especially if you have a baby or infant who may need surgery.
When are seizures considered medication resistant?
A child’s seizures are considered medication resistant if they have failed two appropriate anti-epileptic drugs. The chances of a third medication stopping a child’s seizures falls to approximately 4% and a fourth medication to almost 0%. The test for drug resistance is discussed at length here.
Do I have to wait until my child is drug resistant?
Not in all cases. Some epilepsies, such as Rasmussen’s encephalitis, are drug resistant by their very nature; in other words, no known anti-epilepsy drug or treatment will stop the seizures. Once you have received the diagnosis that your child has a drug-resistant epilepsy, you should ask for a referral to an experienced pediatric epilepsy surgeon for a surgical evaluation.
Other conditions have a very small chance of drug control. This will be obvious early on in the progression of the epilepsy. These conditions include hemimegalencephaly, cortical dysplasia, Sturge-Weber syndrome, and some epilepsies cased by in utero or pediatric stroke.
Is any child a candidate for epilepsy surgery?
Whether a child is a candidate for epilepsy surgery depends on many factors. Children with metabolic or degenerative conditions may not be candidates for resective surgeries, but may be candidates for palliative procedures such as vagus nerve stimulation. Similarly, children with brain malformations or lesions on both sides of the brain are usually not candidates for resection surgery; however, if one side of the brain has only minor malformations, resection can sometimes be performed as a palliative procedure.
What questions should I ask the neurosurgeon?
Remember that the surgeon cannot predict how surgery will affect your child in the long run. They may be able to give you outcomes information based on either their personal experience or published research, but cannot look into a crystal ball.
Epilepsy surgery gives your child the best chance at a seizure-free life, with but it does not guarantee normal development.
Questions to Ask the Neurosurgeon
I’m not ready to go the surgical route for my child and want to try another medication. Should I wait to meet with a surgeon?
A referral to an experienced pediatric epilepsy surgeon does not mean that you have decided to have epilepsy surgery. It means that you have decided to determine whether your child is a candidate for epilepsy surgery and to understand which epilepsy surgery is recommended. This will allow you to weigh the risks and benefits of surgery v. the risks of continued drug resistant seizures.
Should I get a second opinion?
The decision to get a second opinion, and sometimes even a third, is common; however, this must be balanced against the risks of continued seizures while you seek a second (or more) opinions. Seizures, especially in early infancy, can be catastrophic to development and must be stopped as soon as possible.
“No longer should surgery be considered a last resort in the management of children with focal epilepsy resistant to medication. Drug resistance should be apparent early in the natural history of the epilepsy and, therefore, children should be referred early. Much can be gained from early referral and assessment, even if surgery is not an option. Much can be lost by waiting.”
Helen Cross, MD
The Prince of Wales’s Chair of Childhood Epilepsy
Secretary General of the International League Against Epilepsy, 2013-2017
from Epilepsy surgery in children – no longer a last resort
Bergen DC. Do Seizures Harm the Brain? Epilepsy Currents. 2006;6(4):117-118.
Cross, JH. Epilepsy surgery in children – no longer a last resort. (2010) Developmental Medicine & Child Neurology, 52: 111–112.
Cross JH, Jayakar P, Nordli D, et al. Proposed Criteria for Referral and Evaluation of Children for Epilepsy Surgery: Recommendations of the Subcommission for Pediatric Epilepsy Surgery. Epilepsia. 2006;47(6):952-959.
Ibrahim GM, Rutka JT, Snead OC. Epilepsy surgery in childhood: no longer the treatment of last resort. CMAJ : Canadian Medical Association Journal. 2014;186(13):973-974.
Kwan P, Arzimanoglou A, Berg AT. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010 Jun;51(6):1068-77.