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'Scariest moment of my life': Parents share experiences with febrile seizures

A febrile seizure can be a scary experience for the entire family. Experts share what parents need to know.
Febrile seizures are more common in 1- and 2-year-olds, though they can happen any time between 6 months and 5 years of age.
Febrile seizures are more common in 1- and 2-year-olds, though they can happen any time between 6 months and 5 years of age.ljubaphoto / Getty Images

On an otherwise unordinary night in June 2021, Lindsay Moll heard a strange gurgling sound from her 17-month-old son's bedroom.

“I opened the door to hear the gurgling noise even louder. ... I looked into his bed and saw him face down, so I picked him up and he was shaking with slobber coming out the sides of his mouth,” she remembered.

Moll’s son Henry was experiencing a febrile seizure, which can occur when a baby or toddler runs a fever, defined as a temperature greater than 100.4 degrees.

Lindsay Moll has four boys. Her youngest, Henry, experienced his first febrile seizure this summer.
Lindsay Moll has four boys. Her youngest, Henry, experienced his first febrile seizure this summer.Courtesy Lindsay Moll

“Febrile seizures are common,” explained Dr. Sara Molisani, a physician in the division of neurology at Children's Hospital of Philadelphia. “Among children in the United States, about 2%-4% of children will have a febrile seizure. The peak age for febrile seizures to occur is 1 to 2 years; however, children can have febrile seizures any time between 6 months and 5 years of age.”

Moll, a mother of four boys and second grade teacher in Missouri, rushed into the living room and instructed her husband to hold the baby while she called 911. “The seizure lasted a few more minutes, and finally my son stopped seizing, but was very tired and confused looking. We put him on the couch to examine him while we waited for the ambulance. I picked him up when the ambulance came, and that is when he threw up everything he had that evening. He was also very warm to the touch.”

When paramedics arrived, Henry’s temperature was slightly above 103 degrees. “I was shocked because an hour before when I put him to bed, he was not warm to the touch and seemed fine,” Moll said. “I had never experienced anything like that before, and my husband and I were absolutely hysterical that night."

Signs of a febrile seizure

Seizures happen when the brain’s electrical signals fire excessively and synchronously, Molisani said. “Febrile seizures look like other types of seizures except they occur when a child has a fever. (They) can occur with any degree of fever, but do tend to be more common with higher fevers," she explained.

The seizure itself may present in various ways. According to the National Institute of Neurological Disorders and Stroke symptoms include:

  • Child losing consciousness.
  • Arms and/or legs shaking uncontrollably.
  • Eyes rolling.
  • Rigid body or limbs.

The majority of febrile seizures will end on their own in a few minutes, followed by a period called the postictal phase. “The child may be sleepy or confused for some time, often minutes to hours. This occurs as the brain recovers from the seizure,” she added. Vomiting and irritability may also occur.

Dr. Carl E. Stafstrom, director of pediatric neurology and director of the John M. Freeman Pediatric Epilepsy Center at Johns Hopkins Children’s Center in Baltimore, emphasized that most febrile seizures are not preventable. “They are a natural reaction of the developing brain to fever. … It is always common sense to keep a child comfortable and, for that, acetaminophen or ibuprofen are reasonable. But those meds will not prevent febrile seizure occurrence.”

What causes a febrile seizure?

The most common cause of a febrile seizure is a viral infection, according Dr. Kiarash Sadrieh, a pediatric neurologist at Children’s Hospital Los Angeles. “HHV6 (human herpes virus 6) is the most associated virus in the U.S., due to its high fever potential. But any virus or bacteria causing a fever can provoke a febrile seizure. The risk of febrile seizures is also increased after certain vaccinations (DTaP, MMR, MMRV), but the absolute risk is small. The benefit of vaccination outweighs the minor risk for febrile seizure.”

What to do if your child has a febrile seizure:

While febrile seizures can be terrifying for parents and caregivers to witness, they do not cause brain injury or damage.

“As with any seizure, the most important thing is not to panic — easier said than done,” Sadrieh continued. “Place the child on their side in case they vomit. Do not place anything in their mouth. There is no need to restrain the child or try to stop the shaking; the seizure will run its course regardless.”

Caregivers should remain with the child in a safe place and time the seizure. Calling 911 is recommended for a child’s first febrile seizure or if subsequent ones exceed five minutes, as medication may be needed to stop the seizure. “While brief seizures don’t require emergency services, parents should have the child evaluated that day, mainly to check for the cause of the fever,” noted Sadrieh.

Molisani advised also calling 911 if the child experiences “clusters of seizures, if there is any concern about breathing, or if a child is not returning to their normal self after a seizure. There may be other reasons to call 911 and this should be done if there is any concern.” While waiting for an ambulance to arrive, unlock your front door and take pets to a separate room. If possible, gather personal items, such as keys, phones, chargers and insurance cards.

Risk of reoccurrence

After a child experiences a febrile seizure, there is a 33% chance of a second seizure occurring. After two febrile seizures, the chance of a third happening increases to 67%, said Stafstrom. “The more you have, the more you may get.”

There is also a family predisposition for febrile seizures, he added. “Many genes can predispose one to febrile seizures. That being said, siblings of a child who had a febrile seizure may or may not be susceptible to febrile seizures.”

Kellyann Gormley's son, Shawn, at his first birthday party
Kellyann Gormley's son, Shawn, at his first birthday party. His first seizure happened at 1:30 a.m. early the next morning.Courtesy Kellyann Gormley

Kellyann Gormley, 37, lives in New Jersey with her husband and two young children. While she was aware that her husband suffered seizures as a child, his family never knew the cause. Then, two days before their son Shawn turned 1 in 2018, he experienced his first febrile seizure. Over the next two years, Shawn would have four additional febrile seizures.

Like many parents, both Moll and Gormley were unfamiliar with febrile seizures until their son experienced one. “I didn’t even know he had a fever,” said Gormley. “He was perfectly fine.”

Then, around 1:30 a.m., Gormley felt Shawn shaking in bed. “I rolled over in the dark and I’m looking at him, thinking, ‘Why is he straight like a board?’ I grabbed my cell phone, put the light on him, and that’s when I realized — scariest moment of my life — that he was stiff as a board, not convulsing out of control yet, but his eyes had rolled into the back of his head. I freaked out … My husband saw Shawn and lost all the color in his face and screamed to call 911. Shawn’s arms were above his head and just straight … We didn’t know what was happening. We didn’t know it was a seizure. It just looked like neurologically he was leaving. I hate that day.”

Shawn’s first seizure was his worst and considered a prolonged febrile seizure because it lasted approximately 20 minutes. He was still seizing when he arrived at the hospital.

“Two paramedics and one police officer came to my house,” Gormley recalled. “I just remember screaming, ‘Help him!’”

Kellyann Gormley's son, Shawn
Now that Shawn is almost 5 years old, Gormley hopes he will no longer experience febrile seizures.Courtesy Kellyann Gormley

Paramedics cut off Shawn’s pajamas and drove him in the ambulance to an emergency room. “I kept asking during the drive, ‘Is he going to be OK?’ They looked at me and said they didn’t know because they didn’t understand why it had been 20 minutes and he was still not out of it.”

Shawn made a full recovery in time to celebrate his birthday, but just one week later, a second seizure struck. His cheeks appeared rosy before bedtime and he felt slightly warm, so Gormley gave her son Tylenol. “I had that mom sense and thought to myself, ‘He’s not feeling well. I’m just going to (watch him sleep) and wait.’” Around midnight, he started convulsing. He wasn’t stiff like before and this time, he stared instead of his eyes rolling into his head. “Then, and every time after that he seized, he would choke on vomit. I would place him on his side but you could hear him gurgling.”

After the second seizure, Shawn was tested for epilepsy and cleared. It’s been more than a year since Shawn’s last seizure. Now that he's almost 5, Gormley hopes he has outgrown them. “It’s crazy how a slight fever can cause such a dramatic incident … You’ll never get used it. Never.”