Back to Blog
    Epilepsy

    Childhood Epilepsy: A Plain Map of the Syndromes

    |6 min read
    D

    Dovy Paukstys

    Founder, Komori Care

    Abstract photograph for the Childhood Epilepsy: A Plain Map of the Syndromes explainer
    Photo by Lorem Picsum on Unsplash

    By Dovy Paukstys, Founder, Komori Care

    This article is educational and is not medical advice. It does not diagnose, treat, prevent, or cure any condition. Komori is not a medical device, is not FDA-cleared, does not detect seizures, and is not intended for people with epilepsy. Talk with a neurologist or epileptologist about personal medical decisions. Households living with epilepsy should use clinically validated seizure-detection devices as directed by their care team.

    Childhood epilepsy is a pile of different diseases that share a word.

    CDC's 2022 estimate: about 456,000 U.S. children age 17 or younger had active epilepsy. That is not 456,000 copies of the same condition. Some kids have a few seizures and grow out of it. Some have a named syndrome that follows them into adulthood. Some never get a syndrome name at all.

    I am not a pediatric neurologist. I do not have a child with epilepsy. This page is an index. The diagnosis still happens in a clinic.

    A syndrome is a pattern, not a personality

    ILAE's 2017 classification has three levels: seizure type, epilepsy type, then syndrome. The 2022 nosology papers finally defined the syndromes in public, with separate documents for neonates and infants, for childhood, and for variable-age onset.

    ILAE's childhood paper is honest about the limits. A syndrome cannot be determined in every child. When one can be named, it changes the workup, the counseling, and often the medicine choices. That is why the name is worth fighting for, and why guessing from Google is a bad substitute.

    NINDS still talks about "the epilepsies" for the same reason. Causes, seizure types, and outlook vary so widely that the plural is more accurate than the singular.

    What NINDS puts on the childhood list

    I opened the NINDS epilepsy page. The childhood section is a tour, not a complete atlas.

    Infantile spasms usually start before 6 months. A spasm can look like a head drop, a jackknife at the waist, arms flinging up. The EEG pattern clinicians look for is hypsarrhythmia. When spasms, developmental trouble, and that EEG travel together, the old name was West syndrome. ILAE now uses infantile epileptic spasms syndrome (IESS). Many of those infants later develop other seizure types. See infantile spasms / West syndrome.

    Childhood absence epilepsy is the staring-spell syndrome. It often stops around puberty. Some children keep having absences, or pick up other seizure types. See absence seizures.

    Lennox-Gastaut syndrome is the multiple-seizure-type, hard-to-treat syndrome that usually starts before age four, with drop attacks in the mix. NINDS calls it severe and difficult to treat. See Lennox-Gastaut syndrome.

    Dravet syndrome typically starts with seizures before age one, often with fever, in a child who had been developing typically. See Dravet syndrome.

    Ohtahara syndrome is an early developmental and epileptic encephalopathy. Seizures and developmental delays usually begin in the first three months. Tonic seizures are the usual type. See Ohtahara syndrome.

    Juvenile myoclonic epilepsy shows up later, often around adolescence, with myoclonic jerks especially after waking. NINDS says JME and LGS are usually present for life. See juvenile myoclonic epilepsy.

    NINDS also names DEE as a group: severe epilepsies with drug-resistant seizures plus encephalopathy (developmental delay or loss of skills). See developmental and epileptic encephalopathy.

    Two more named pages on this site belong in the same folder:

    The long tail of rarer genetic epilepsies (CDKL5, SCN8A, STXBP1, and neighbors) is the existing post Beyond Dravet and LGS. That post stays at its live slug. This page is the childhood hub.

    ILAE's three childhood buckets

    The 2022 childhood position paper splits childhood-onset syndromes into:

    1. Self-limited focal epilepsies (including the old centrotemporal / "rolandic" group, and a few occipital syndromes).
    2. Generalized epilepsies (childhood absence, epilepsy with myoclonic absence, epilepsy with eyelid myoclonia).
    3. Developmental and/or epileptic encephalopathies (including EMAtS / Doose, LGS, DEE-SWAS, HHE, FIRES).

    Neonatal and infantile syndromes, including Dravet, IESS, and Ohtahara / EIDEE, live in the companion infant paper. JME lives with the idiopathic generalized epilepsies that can start in adolescence.

    You do not need to memorize the org chart. You need to know that "childhood epilepsy" is a filing cabinet.

    First seizures in kids are not automatically epilepsy

    NINDS: having a seizure does not by itself mean a child has epilepsy. Febrile seizures happen with fever, most often in young children, and most of those children are not then put on daily antiseizure medicine. First provoked seizures have a similar logic.

    CDC first aid still applies. Time it. Protect the head. Do not put anything in the mouth. Call 911 if it lasts more than 5 minutes, repeats, happens in water, or the child is injured, or it is a first-known seizure. Infants under 6 months sit on some first-aid emergency lists as an automatic call. When in doubt, call.

    See seizure first aid and status epilepticus.

    School, sleep, and the rest of life

    NINDS notes that children with epilepsy have a higher risk of depression and ADHD than peers. Behavioral trouble can show up before the first recognized seizure. Teachers need a seizure action plan. Extra time on work is a reasonable accommodation, not a favor.

    Sleep loss is a trigger. Night events are easy to miss in a kid who cannot describe them. See sleep and epilepsy and nocturnal seizures.

    Consumer wellness monitors are not for this. Komori does not detect seizures and is not intended for people with epilepsy. Households use clinically validated seizure-detection devices as the care team directs.

    Related reading

    FAQ

    How common is epilepsy in children?

    CDC estimates 456,000 U.S. children age 17 or younger had active epilepsy in 2022. That figure is from the National Survey of Children's Health, cited on CDC's epilepsy basics page.

    Does every child with epilepsy get a syndrome name?

    No. ILAE's childhood paper says a syndrome cannot be determined in all children. When one can, it guides management and prognosis.

    Do kids grow out of epilepsy?

    Some do. NINDS says some childhood syndromes go into remission in adolescence. Childhood absence often stops at puberty. JME and LGS are usually lifelong. "Resolved" in the ILAE 2014 definition is a clinician label, not a promise.

    Who diagnoses a childhood epilepsy syndrome?

    A physician, often a pediatric neurologist or epileptologist. History, witness accounts, EEG, and imaging are the tools. No website and no consumer device can do this.

    Sources

    Keep reading

    Share this post:XLinkedInFacebook