First Seizure: Understanding Next Steps for Patients and Families

Around 1 in 10 people will have a seizure in their lifetime. Not every person who has a seizure goes on to develop a seizure disorder; sometimes it’s an isolated event. But even if a child only has a single seizure in their lifetime, it can be extraordinarily alarming for them and their family. “I have had families describe the experience as frightening, confusing, or even traumatizing,” says Dr. Priya Monrad, pediatric epileptologist and director of Inpatient Neurosciences at Seattle Children’s Hospital.

Prompt evaluation is important. “Seeing children as early as possible helps us determine the best treatment,” says Dr. Monrad.  “However, studies have shown that approximately one in four children referred with a first seizure have had a nonepileptic event instead, and in another study, 39% of children who were admitted to a tertiary epilepsy center for a seizure-like event were found to not have epilepsy. Thoughtful evaluation helps us avoid overtreating or undertreating a child who has had a first seizure.”

Next Steps After a First Seizure

Kids do best when seen in a specialty program like Seattle Children’s which is accredited Level 4 by the National Association of Epilepsy Centers and offers the most advanced diagnosis and treatments available from a very experienced team. While it may take a few days longer to be seen here initially, urgent cases are always scheduled quickly into the First Seizure Clinic, and other cases are safe to wait for the next available Neurology appointment. Counseling families when referring them to a specialist will help them feel more comfortable as they wait for their appointment.

Specialist care is worth waiting a few extra days for — it reduces the risk of overdiagnosis or underdiagnosis of seizures, and kids have many seizure mimics.

Triage and Scheduling

Here are the guidelines we use at Seattle Children’s to triage patients into either the First Seizure Clinic or general Neurology. Submitting a complete and detailed referral is very helpful. Our RNs and APPs review all referrals to determine where best to schedule them.

* Most simple febrile seizures can be addressed in the primary care setting. See AAP ad AAFP guidelines.

What to Tell Families After a First Seizure

When talking with families after their child’s first unprovoked seizure, here are some things you may like to share:

1. Not every child who has a first seizure will go on to develop a seizure disorder/epilepsy (those terms are interchangeable). Testing will help us figure out who is at high risk of future seizures and who is not.
2. Some seizure disorders only last for a set period of time (e.g., for two to three years or until puberty), and others last for the rest of the person’s life. If a child is diagnosed with a seizure disorder and prescribed medicine to prevent seizures and protect normal neurological development, that doesn’t guarantee that they will be taking it for the rest of their life. Many patients can taper off or even stop their medication over time. We aim to achieve seizure freedom for at least two years before attempting to wean a medication.
3. Some parts of a seizure can be unexpected and frightening for an observer to witness but do not necessarily mean the child’s life is in danger.
   1. Many seizures can cause a color change in their face — they rapidly turn red, pale, grayish or show perioral cyanosis, depending on their regular skin color. Their hands and feet may turn cold and clammy, and pulse oximeters may not pick up a reliable tracing. This is primarily due to the release of adrenaline during a seizure and not a heart attack or lack of oxygen to the brain.
   2. Children may “foam at the mouth” during a convulsive seizure. This is simply saliva bubbles caused by tensed mouth muscles that they are not swallowing until they become more awake. If they accidentally bite their tongue or cheek during a seizure, there may be a pink tinge to the saliva.
   3. Children may not look like they are breathing because their chests aren’t visibly rising or falling, which is frightening when combined with perioral cyanosis as described above. In most healthy children, this is just due to stiffening of all muscles, including the muscles of the torso, without interfering with breathing.
   4. After a seizure, it is normal for many children to be tired and to want to sleep from a few minutes to several hours. As long as the child is responsive (they are groggy but resist being disturbed), it is all right to let them sleep.
4. Even previously healthy children can develop seizures. We do not yet know every cause of seizures, but some common causes are:
   1. Genetic (caused by a genetic change, whether it runs in the family or not)
   2. Structural brain injury (prematurity, injuries, strokes, infections)
   3. Toxic/metabolic causes (ingestions, organ dysfunction, inborn errors of metabolism)
5. Since this is a common occurrence in children, we know from experience in seeing so many children with first seizures that the vast majority of babies and children are safe and healthy even if they wait to be seen in a first seizure clinic or in neurology clinic. However, providers please call the Provider-to-Provider line (206-987-7777) to discuss expediting the visit if:
   1. Recurrent/escalating events
   2. New neurological symptoms that have not returned to baseline within a few days after the seizure-like event

Referring to the First Seizure Clinic at Seattle Children’s:

• The First Seizure Clinic is for patients who recently experienced their first seizure. If they had seizures previously but only recently sought care, please refer them to Neurology instead.
• Follow our regular referral process and write “First Seizure Clinic” on the referral. Please include all relevant information about the patient.
• It is not necessary to call the Provider-to-Provider Line, 206-987-7777, to refer a patient to the First Seizure Clinic.

For more information:

• For more information about our epilepsy program: flyer
• Our epilepsy care coordinators: flyer
• Seattle Children’s Epilepsy Program
• Patient Handout: Febrile Seizure
• You may email questions to Dr. Monrad directly at Priya.Monrad@seattlechildrens.org (providers only)