Toddler Diagnosed with Rare Form of Epilepsy

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EEG wires are connected to Madison’s head to view brain waves to determine her epilepsy. (Photo courtesy of Danielle Viens)

Starting at 15-months old, young Madison has been poked and prodded due to a seizure that nearly took her life caused by a high fever. Today, she is a happy and healthy 4 ½ year old with big ambitions and a sparkling personality but she is also an epileptic. Madison has lived a different life than most kids. She spikes random high fevers which can then cause febrile seizures. Madison unfortunately has undergone a series of tests in her short life only to come up short for a proper diagnosis.

Febrile seizures occur in children starting at the age of 3 months to roughly 6 years and occurs from 2%-5% of children. They are sudden onset seizures that occur with a particularly spike in body temperature. They can also bring on an additional issue in children known as absence epilepsy which is diagnosed through an electroencephalogram or EEG. Absence seizures cause the person to stare blankly into trance-like states. It can often be confused for daydreaming.

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25 wire wait to be connected to Madison’s scalp to watch her brain waves. (Photo courtesy of Danielle Viens)

Madison began with febrile seizures and it eventually transformed into absence epilepsy. She was diagnosed fairly recent by an EEG. The possibility of her growing out of them will be high after the age of 14. She will go into these trance-like states and be unresponsive for up to 20 seconds. During her EEG, Dr. Ed Smith, a pediatric EEG specialist said, “It is uncommon for kids her age to be diagnosed with this kind of epilepsy and although it can be a tricky thing to diagnose, it is still there.” He went on to study her brain waves and show when a seizure would occur. “She does not move during them which means no one truly knows she is having a seizure,” said Smith.

Children her age can be difficult during an EEG; a child life specialist is always on call with a device to help distract the child from the test. It does not affect the test in any way, it helps keep the child calm and focused so they are stress free during the test.

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Madison laying perfectly still watching videos her child life specialist brought in as a distraction to help her stay calm. (Photo courtesy of Danielle Viens)

Though Madison has developed epilepsy, she does not remember her seizures and continues to thrive and be a kid. Doctors are hopeful that she outgrows this but only time will tell.

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