Epilepsy: Leah’s Story

In July 2019, everything changed for seven-year-old Leah Ehrenstrom. The Ehrenstrom family was on a flight from Rome to London. The plan was to get to London and board a plane flying back to the United States the following day. However, Leah experienced a sudden seizure during the flight. She had no prior diagnosis of epilepsy or anything seizure-like, so the seizure was both terrifying and surprising.

Leah’s mom, Katie Ehrenstrom, explains that she was “freaking out” during Leah’s seizure because she was worried for her daughter’s safety. Thankfully, the plane was already on descent and an ambulance was called right away. “They called for a doctor and nurse because she was pretty much unconscious,” Ehrenstrom recalled.

Leah couldn’t speak at first, but once in the ambulance, her speech returned. She couldn’t answer simple questions such as where she was or what had happened. She was in a state of confusion after the traumatic event and she ended up not remembering much of what had occurred later on. 

The medics thought Leah had had a febrile seizure (caused by fever). But Leah hadn’t had a fever and she wasn’t sick. They later found out it was a tonic-clonic seizure (also known as a grand mal).

Leah’s pediatrician was called and the family received permission to fly home the next day. Right after they landed in the United States, they brought Leah to the hospital to get treated and she was brought to a neurologist. 

Her first electroencephalogram (EEG) resulted in sizable seizure activity. She was put on medication that caused bad side effects before being switched to another. This second one wasn’t any better so they switched Leah to valproic acid. “They had to up the dose a few times,” Ehrenstrom explained. Leah is still on valproic acid and going strong amid the increase in doses. The only side effect found was that it changed her straight hair into curls.

Ehrenstrom said that Leah’s most recent EEG “was in May and that was the first time we got a normal EEG. And then she gets to wait a year before she has another one.” This is exciting news for Leah who has undergone six EEGs. For more information about EEGs and seizures, check out last week’s epilepsy article.

Over time, grand mal seizures became less of an issue for Leah, and absence seizures became more noticeable. Absence seizures can be small and barely noticeable. The person experiencing them zones out for a few seconds or stares into space. “She got to the point where she could start to feel those … They were quick, but she did start to say … ‘I think I just had one.’ Like she was realizing that she was missing a bit of time,” said Ehrenstrom.

Leah’s teacher was also quick to catch the absence seizures. “Her teacher would message [us] every week and tell us the days she noticed seizure activity or not,” Ehrenstrom added. 

When Leah was diagnosed with epilepsy, she had to miss out on so much. She had to take a break from swimming, riding her bike, playing at the playground and so much more. “For a long time, she wasn’t allowed to swim or bike or any of those things,” Ehrenstrom said. Even a simple thing like showering was scary to think about. “Sometimes I worry … I think, ‘oh my gosh, what if something happened?’”

When Leah was finally able to swim again, Ehrenstrom said, “It was kinda hard to think about [and] to watch … But now I feel better because it seems like it’s more controlled than it ever was.”

Ehrenstrom proudly explained how Leah faces her epilepsy. “She’s definitely not scared to talk about it or she’ll tell people. Like she’s not afraid … to talk about it or she doesn’t seem embarrassed about it which I think is good. She likes to teach people if somebody is having a seizure what you’re supposed to do.”

The only thing Leah is worried about is “having another big seizure.” Going through a grand mal is a scary thing that Leah had to face when she was only seven years old. However, Leah doesn’t let fear of a seizure keep her from doing things. This outgoing and determined nine-year-old (almost 10) throws fundraisers to donate to the Epilepsy Foundation to support epilepsy research. She walks with family and friends during the Walk to End Epilepsy and even has a lemonade stand from time to time in front of her house.