From the time Jaxon Lail was a baby, his mom noticed little movements that concerned her. When he was 2½, a visit with our neurology team confirmed her hunch.
Jaxon experienced five tonic-clonic seizures in one day, prompting Jennifer to call EMS. After the visit at their nearby emergency room, they went to the pediatrician who then referred them to CHoR. Jaxon had already received excellent care from Dr. Kelley Dodson and our ENT team, so his parents were more than comfortable coming back. Dr. Arun Kalra, who has since retired, made the official diagnosis of intractable generalized epilepsy with myoclonic seizures.
Epilepsy is a neurological condition where abnormal surges of electrical activity in the brain cause seizures. The good news? Jaxon was in the right place. As a Level 4 Epilepsy Center, we offer the most sophisticated monitoring, treatment and surgical options for kids with seizure conditions.
“It was hard to hear the diagnosis, but my mom gut was right,” said Jennifer. “I educated myself and Dr. Kalra took me seriously. She wanted to help Jaxon.”
Jaxon, who will turn 10 next month, has seen many members of our neurology team over the years through rounds of testing, treatments and follow-ups. In June 2023, he was the first patient admitted to our Children’s Tower’s new epilepsy monitoring unit where he underwent continuous electroencephalography (EEG) monitoring for insight into the connections between his brain activity and seizure symptoms. During this stay, Jaxon worked closely with nurse practitioner Ashley Perry.
“We loved Ashley. She’s incredible. We went in a nervous wreck and we couldn’t have asked for better care and support from the whole team,” added Jennifer.
“My goal is to listen to the family's concerns and then be able to explain what we have learned during their stay in a way that is appropriate for both the caregiver and the patient. Caring for patients with epilepsy becomes a partnership with the parents and it is important to build both trust and respect during their stay as we are often on a long journey,” said Ashley.
It’s been a bumpy road for Jaxon and his family to say the least. Things start to look up when he goes several weeks – or even months – without a seizure, then it starts all over again. He’s had seizures at home and at school. Each time, Jennifer puts a note in his MyChart patient portal account.
“When I put it in the portal, nurse Jessica Yates always takes the time to talk to me on the phone about it,” said Jennifer gratefully.
“Epilepsy can be scary, especially in the beginning or while trying to get seizures under control. We want to help get rid of some of that fear by providing patients and families the education and resources they need to feel more confident in managing their disease,” said Jessica. “We love to be our patients' biggest supporters and see them thrive.”
Dr. Ewa Way let Jaxon see the inside of his brain during a recent visit, which he thought was the coolest thing ever! He’s hoping she can give him a copy of the picture so he can show his classmates.
While Jaxon can’t go to sleepovers or take off on his bike without a worry, he stays active and has plenty of fun playing football and basketball, hanging out with friends, playing video games and cheering on his favorite teams – the Tampa Bay Buccaneers and Phoenix Suns. He’s also been learning to surf the last couple summers with Paul’s Purple Warriors, an epilepsy education and advocacy group.
“We used to try to keep him in a bubble, but we’ve learned from other parents in support groups you can’t let epilepsy control your life,” said Jennifer.
As Jaxon gets older, he wants to share his story and make sure other kids with epilepsy don’t feel alone. His mom is passionate about building a community of support too, serving as vice president of the Epilepsy Foundation of Virginia Central Virginia chapter and starting a support group for families navigating epilepsy.
“He’s the strongest kid I’ve ever met. He’s a fighter and he stays positive and strong. He’s not going to give up. He’s going to go to school like everyone else, even if he has to be late. He wants to conquer epilepsy and not let it conquer him,” added Mom.
November is National Epilepsy Awareness Month. The Epilepsy Foundation is a great resource for information about the condition, seizure first aid and more.
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