A new diagnosis, a new treatment

Seizures have been a concern for much of Lucy’s life.

Initially, she was weaned off seizure medication before her first birthday when the seizures she had in the NICU hadn’t returned. That was until one day when then-two-year-old Lucy woke up and her parents knew something wasn’t right, later learning the seizures had returned.

In the three years since, the concern about seizures has always been present. But late last year, the need to do something became incredibly important.

 

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That’s how Adrienne Mageors went from asking for a new EEG to trialing an intensive treatment for an all new diagnosis for her five-year-old daughter Lucy.

“It has been an absolute whirlwind,” Adrienne said.

Earlier this year, Lucy was diagnosed with ESES, or Electrical Status Epilepticus during Sleep, which is a disorder in the epileptiform activity in the brain that takes place during sleep, causing "unseen" (or subclinical) seizures.

The new diagnosis led the Texas family to Cleveland Clinic, where Lucy began a rigorous treatment, including a high dose of Valium and steroids to try to get the seizures under control.

 

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In the weeks since, Adrienne has already seen significant improvements in Lucy’s speech, social skills, balance and motor skills. But they still have a long road ahead, she said.

“Other people get really excited and I have to caution them, ‘she’s not “fixed,” she still has a brain injury,’” Adrienne said.

Getting to this point has been a journey on its own. It started in December when Adrienne requested a new EEG for Lucy. She had noticed Lucy hadn’t been coming into her room in the middle of the night like she had for years. Adrienne hoped that just maybe the EEG would look better than past ones.

Instead, their doctor called them in to discuss the results, which looked worse than past EEGs. ESES was mentioned, a term Adrienne had heard before but that doctors never thought truly fit Lucy. And it still didn’t seem like it fit, since Lucy didn’t seem to have all the symptoms, including with her cognition and hearing, which usually worsen with ESES.

The doctor suggested waiting and seeing how Lucy progressed – a phrase Adrienne had become extremely familiar with in her HIE journey. But the idea of ESES kept eating at Adrienne.

Adrienne’s sister reached out to a colleague who had written a paper about ESES – coincidentally the week after Lucy was born. She recommended she contact specialists in either Cleveland or Boston.

With their family in Texas, neither option was close. They chose Cleveland, sending mountains of records as part of the intake process. The response was fast: they wanted to see Lucy in three weeks.

“I felt very empowered. This specialist thought it was necessary for us to get there,” Adrienne said.

 

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As soon as they got there, the whirlwind began. They met with a specialist, went over Lucy’s history and the records they had sent and then were shocked by her response.

“She said, ‘I can fix this.’ You don’t hear people tell you they are going to fix anything with your kid,” Adrienne said.

Their stay wasn’t easy. Lucy became ill, and at one point infectious disease specialists were called in to see if she could even begin treatment.

Then, once treatment began, Adrienne had to watch her little girl suffer the side effects of treatment, including being completely out of it but unable to sleep after a high dose of Valium.

But then came the daily EEG results, showing improvement every night she was there. Those results were hugely encouraging, especially when they struggled with the side effects of the treatments. When they left, Lucy was too groggy to even walk.

“We were actually leaving with a kid who was worse off than when we came,” Adrienne said.

 

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But since coming home, Lucy has continued to improve. A big area where she has advanced is with her social skills, her mom said.

So many of Lucy’s issues from her HIE injury don’t show up physically, and Adrienne has always worried about how other kids will treat her daughter. But now, kids are seeking Lucy out to play.

School is also a concern, since they want to plan for the future and no one can say right now what that looks like, Adrienne said.

“Black and white is not our life. We live in the gray,” she said.

“Everyone always says she is such a puzzle. I know, I need you to be able to think outside of the box.”

More changes will happen in the future too, especially as Lucy moves forward with treatments, including coming off the steroids, doctors have said. That uncertainty was hard to deal with at first. But Adrienne continues to advocate for her girl.

“Her body is going through so much; we owe that to her,” she said.

“It’s her journey, and we’re just along for the ride.”

 

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She is also hopeful of what the treatment will do for Lucy, but she is realistic, too.

“I am hesitant to buy into the doctor’s promises. But I hope we will see improvements,” Adrienne said.

The road ahead is still long, including more visits to Cleveland. That prompted the family to launch a T-shirt campaign to help pay for their continued travel experiences.

 “You take a lot of pride in taking care of your kid. But this really stretched us,” she said.

The experience was humbling, heartwarming and surreal as they exceeded their goal, Adrienne said.

 

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In addition to their friends and family back home, they also continue to lean on their HIE support system, including a fellow HIE family that lives in the Cleveland area meeting up with them while they were there for treatment.

“Our hope tribe is invaluable. They offer a listening ear from people who just get it,” Adrienne said.

 

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