Severe epilepsy in children can bring challenges many parents never imagined facing. Those initial seizures can be frightening and unpredictable, and in the aftermath, families may find themselves facing a future filled with questions about their child’s health, development, and care.
For some children, the journey extends far beyond managing seizures.
When epilepsy becomes medically complex, it can impact nearly every aspect of a child’s health and require continued around the clock level of care.
Epilepsy Looks Different For Every Child
An estimated 456,000 American children live with epilepsy, according to the Epilepsy Foundation.
Seizures can start at various ages and stages of development. No two seizures look alike in children, either.
Epilepsy is known to cause seizures, but not all seizures are caused by epilepsy, which is why early intervention and treatment are essential in kids to understand the actual condition happening.
While epilepsy is a neurological disorder characterized by recurrent seizures, the experience of living with it can vary widely.
For some kids, epilepsy may be a temporary issue that‘s controlled easily by meds. Under medical supervision, stopping treatment may eventually be possible.
But severe epilepsy in children has lifelong challenges that impact quality of life. Severe epilepsy may persist despite multiple medications, particularly when a child has an underlying genetic or neurological condition that also affects development and overall health.
The difference isn’t simply how often a child has seizures. A child’s medical fragility can also depend on:
- how long seizures last
- how well they respond to treatment
- whether other neurological or developmental conditions are present
- whether complications involving breathing, feeding, or mobility create extra risks
Some children need around-the-clock supervision, specialized equipment, or frequent hospital care to help manage these challenges. For these families, epilepsy becomes more than a seizure disorder; it’s an ongoing life challenge.
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What Makes Epilepsy Medically Fragile?
When everyday life activities have to be significantly modified to keep an epileptic child safe, their case is often considered “medically fragile.”
Severe epilepsy in children is deemed medically fragile when seizures, treatment, underlying disease, or related complications create significant ongoing medical vulnerability.
It goes beyond seizures to include everyday lifestyle changes that are necessary to help a child with neurological challenges from seizures. It’s worth mentioning that while seizures are a part of epilepsy, that’s not the only part of the condition that can be challenging for patients and their caregivers.
Severe epilepsy in children may cause:
- Frequent or prolonged seizures – Seizures that cluster together and become longer can develop into an emergency. Severe seizures can trigger high or low blood pressure, cardiac arrhythmias, blocked airways, and other complications that require immediate medical intervention.
- Status epilepticus – This is a type of seizure that lasts five minutes or longer. It may also include multiple seizures without regaining consciousness. It most commonly happens in young children.
- Cognitive and memory impairments – Often, long-term complications affect memory, learning, and executive function. It depends on which area of the brain the epileptic activity happens. Consider using this checklist to track behavioral and cognitive impacts.
- Nocturnal seizure activity – Sleep can be a complicated part of managing epilepsy. Some cases may show increased seizure activity with sleep. Sleep deprivation can worsen episodes. Parents may need to meticulously track sleep and enforce healthy sleep patterns to reduce episodes. One study found that almost two-thirds of seizures happen between 8 p.m. and 8 a.m., with 20% occurring during sleep, according to a World Journal of Clinical Pediatrics article.
- Seizures that are difficult to control with medication – Many children respond well to antiseizure medication, but others continue to have seizures despite treatment. Epilepsy that remains uncontrolled after trials of two syndrome-adapted drugs is generally considered drug-resistant epilepsy. These children may need additional evaluations that can lead to stimulation-based treatments or surgery, according to the International League Against Epilepsy. Persistent seizures can increase the risk of injury. It may also impact development and quality of life.
- Respiratory complications — Some seizures — such as tonic-clonic — can affect breathing, and a child may need close observation during and after an episode. Tonic-clonic seizures are also known as “convulsions” and are characterized by stiffening and rhythmic jerking, according to the Epilepsy Foundation. In certain cases, impaired breathing, reduced oxygen levels, or complications such as aspiration require emergency intervention. Risks depend on the child’s seizure type, underlying health, and other medical needs. A child’s neurologist should provide an individualized seizure action plan that explains what caregivers should watch for and when to call emergency services.
- Feeding and swallowing difficulties — Some children with severe epilepsy also have neurological or developmental conditions that affect their ability to chew, swallow, or eat safely. These cases may require modified food textures, feeding therapy, specialized positioning like in a wheelchair, or even a feeding tube or G-tube (gastric). Extra support during meals may also be required to ensure food, liquid, or saliva don’t enter the airway, creating a risk of aspiration. Not every child with epilepsy may experience it, but such circumstances can add substantially to the daily care a family must provide.
- Developmental regression or significant developmental impairment — Unfortunately, severe epilepsy can cause developmental delays or the loss of skills a child previously had, such as communication, movement, or self-care abilities. This may relate to the underlying condition, the effects of ongoing seizures, or other neurological factors. Due to these ongoing demands, families often coordinate therapies, specialized education, and additional medical care. Not every child with severe epilepsy experiences regression. When a child loses a previously acquired skill, share that insight with the child’s medical team immediately.
- Medical equipment dependence – Some children may need a variety of medical devices to help them with everyday living as an epileptic. From anti-suffocation pillows and protective headgear to implantable neurostimulators and wearable monitors, patients may require these as part of their treatment plan. These can be especially helpful for those who haven’t had luck with medications.
- Medication dependence – For children with severe epilepsy, daily medication is essential to managing seizures, and missed or delayed doses may increase the risk of breakthrough seizures. Parents often coordinate prescription refills, communicate with doctors and pharmacists, and work with insurance companies to address treatment delays or interruptions. Specialty “rescue meds” may be prescribed to manage prolonged seizures or seizure clusters. Understanding prescription instructions, including when a medication must be dispensed as written, can help families ensure their child receives timely, appropriate treatment. These added responsibilities can make medication management a significant part of caring for a medically fragile child.
- Additional health conditions – Research indicates children with epilepsy are at a higher risk for intellectual, developmental, and mental health comorbidities. In fact, 80% of epileptic children studied had cognitive impairment and/or at least one mental disorder. Common comorbidities include learning disabilities, ADHD, depression, autism, and anxiety, according to the American Academy of Pediatrics.
- Frequent emergency care/hospitalizations – Due to the damage prolonged and frequent seizures may cause, children may be hospitalized often to be monitored and treated.
A Note About Treatment Side Effects: Not every child with severe epilepsy will experience all of these challenges. Medical fragility can look very different from one child to another. Because epilepsy is treated with medications, it can impact quality of life as well. Some medications require monitoring because they can affect blood counts, liver function, or other health markers.
Severe Epilepsy Syndromes
An evaluation at an epilepsy center or with an epilepsy specialist confirms seizures and the type your child may be experiencing.
Below is a brief look at some of the more challenging forms of epilepsy.
For example:
- Dravet syndrome – This condition is a medication-resistant developmental and epileptic encephalopathy that develops in 1 in 15,700 babies. With the onset of symptoms, patients may present with developmental delays and features of autism spectrum disorder, according to The Children’s Hospital of Philadelphia.
- Lennox-Gastaut syndrome – This condition starts before the age of 4. The cause is undetermined in 30 to 35% of patients.
- CDKL5 deficiency disorder – One of the most common genetic epilepsy types. Most children have severe intellectual disability and often are wheelchair bound.
- Infantile epileptic spasms syndrome – Typically found between one and 24 months of age, with the peak between 3-12 months. The condition causes seizures with jerky head or body movements or what looks like “forceful crunching.” It is often mistaken for acid reflux or colic.
- Status Epilepticus – This condition includes multiple seizures without regaining consciousness. This type of seizure may also last longer than five minutes. It’s essential to call 911 due to the risk of brain damage or death. It is often caused by stroke, withdrawal from seizure meds, autoimmune disorders, or an imbalance in the body, such as blood sugar, according to Johns Hopkins Medicine. Complications of status epilepticus can include stroke or brain injury.
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The Medical Fragility of Children with Severe Epilepsy
Every case is different, but there are basic precautions epilepsy caregivers may want to consider for their child. Injuries in particular are common during a seizure, especially if a child loses consciousness and falls.
Some of the best ways to reduce the risk of additional seizures or injury from seizures may include:
- Helmet safety – Remind your child always to wear a helmet during activities like biking or skateboarding. Any chance to protect the brain from damage from a fall is essential, especially for epileptics.
- Seizure protocols – Being prepared for seizures can reduce injury risk. When a seizure begins (or you can tell one is coming), getting your child to a safe spot without sharp objects or hard surfaces is safest. If possible, placing a shirt or jacket under their head can be protective. For some families, a wheelchair may be necessary to strap a child into a reclined position for safety purposes as well.
- Good sleep hygiene – Quality sleep is particularly important for growing children with epilepsy. Unfortunately, severe epilepsy in children can hamper quality sleep, and disrupted sleep in turn can cause more seizures. Sleep disorders like sleep apnea are also more common in those with epilepsy. Working with a sleep specialist can uncover sleep conditions that may impact sleep cycles.
- Supervision during sports – Wearing appropriate protective gear, especially headgear, can help reduce trauma to the brain that can trigger seizures. Make coaches aware of seizure safety protocols.
- Teens and driving – Discuss driving restrictions with your child’s physician. Some teen drivers may be able to drive when properly medicated. Teens with uncontrolled seizures will not be allowed to obtain a license.
- Heights & falls – Keep in mind that epileptic children should sleep on bottom bunk beds or even with the mattress and box springs on the floor, so they don’t get injured if a seizure occurs overnight and they fall out of bed. Activities like tree climbing also need to be carefully monitored.
- Water safety – Keep bathroom doors unlocked for safety while still respecting a child’s privacy. Any time around bodies of water — including bathtubs — should be closely monitored. Never let an epileptic child swim alone.
A note about teenagers: For teens, helping them understand how to advocate for themselves can be a life-changer. If they socialize away from parents, a responsible adult and others around them should know the seizure protocol in the event one happens. A seizure rescue plan should be in place and given to teachers, coaches, and other relevant parties. Teach close friends seizure first aid as well, as encouraged by the Epilepsy Foundation.
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Your Child is More Than Epilepsy
A hopeful stat to note: Cleveland Clinic estimates that over 60% of epileptic children outgrow their condition before adulthood.
Some, though, may have to manage the condition forever.
And the children who become recipients of On Angels’ Wings suffer from medical fragility caused by, or which causes, seizures, requiring 24/7 medical care.
For parents, remember to reach out for support. It can be exhausting to schedule ongoing specialist appointments, manage medications, and be on alert for seizures 24/7, especially when newly diagnosed.
Some families may always feel the uncertainty of not knowing what the next seizure will bring. There may be grief associated with knowing your child lives with profound limitations. Grief may also settle in when your child loses abilities they previously had.
Amidst that uncertainty, please know you aren’t alone. Support and parent groups are available to encourage you during the challenges of caring for an epileptic child.
Hospitals in OAW Service Areas
Epilepsy care isn’t always a standalone specialty at every children’s hospital. Most major pediatric hospitals have pediatric neurology services to help diagnose and treat epilepsy. Larger children’s hospitals and academic medical centers may also have dedicated epilepsy centers, comprehensive epilepsy programs, and Level 3 or Level 4 epilepsy centers.
Here’s a look at a few:
- Children’s Minnesota
- Lurie Children’s Epilepsy Center (Illinois)
- Washington University Medicine Pediatric Epilepsy Center at St. Louis Children’s Hospital
- Riley Hospital for Children at Indiana University Health
- Children’s Hospital of Philadelphia (CHOP)
Other Resources to Consider - American Epilepsy Society
- CURE Epilepsy
- Danny Did Foundation
- Empowering People’s Independence
- Epilepsy Foundation
- International League Against Epilepsy
- The Epilepsy & Seizures Helpline
- Lurie Children’s Epilepsy Center
What do you wish others understood about severe epilepsy in children? Please share your thoughts below.
