Despite Rare Epilepsy, Ongoing Care from Pediatric Neurology Team Helps Hayden Enjoy Kid Stuff

Despite Rare Epilepsy, Ongoing Care from Pediatric Neurology Team Helps Hayden Enjoy Kid Stuff

It was the staring spells that tipped off Hayden’s speech-language pathologist. During occupational and speech therapy at Valley Children’s Therapy for delayed motor skills and attention difficulties, three-year-old Hayden would randomly go off into her own world and not respond. After a referral to Valley’s Pediatric Neurology Clinic, pediatric neurologist and epilepsy specialist Kevin Joseph, DO evaluated Hayden.

Through Valley’s video electroencephalogram, or VEEG, monitoring, the gold standard for evaluating electrical activity of the brain, Dr. Joseph could observe Hayden while an episode was occurring to determine if she had epilepsy or some other neurologic condition. 

Dr. Joseph diagnosed Hayden with a rare form of epilepsy, epileptic encephalopathy with continuous spikes and waves during sleep (CSWS), which causes especially severe seizures while she is sleeping. For the last seven years, in collaboration with Children’s Therapy, he has been regularly involved in her care. At Valley, Hayden is now trialing a medication through infusion therapy to reduce the frequency and severity of her seizures. She receives periodic VEEG monitoring to determine the medication’s ongoing effectiveness.

“Dr. Joseph is a real advocate for Hayden’s care,” says Dana, Hayden’s mother. “I like the continuity of care at Valley. Between Pediatric Neurology and Children’s Therapy, it’s been a team effort all the way. The nursing staff knows us and the doctors and nurses go out of their way to make Hayden comfortable.” Since their family lives in Renton, Dana also appreciates how convenient it is to get Hayden’s specialized neurologic care at Valley.

Through Dr. Joseph’s recommendation, Hayden also received an overnight pediatric sleep study at Valley’s Pediatric Sleep Center. He diagnosed Hayden with pediatric obstructive sleep apnea and prescribed a continuous positive airway pressure machine, or CPAP. The machines help people breathe more easily and sleep more soundly. “The response from Hayden’s teacher is that treatment is going well because things are going well in the classroom,” says Dana. “Sleeping with a CPAP has dramatically solved Hayden’s sleep apnea. Her mood, behavior and energy have all improved. She wakes up rested and in a much better mood. She’s feeling so much better that she even asks to wear her CPAP at night.”

In addition to her role as mom, Dana is a nurse at another local hospital. “Because Hayden’s epilepsy is so unusual, we’ve had some challenges with her care. But with Dr. Joseph’s help, the treatments have evolved. I feel Hayden is getting an excellent level of care at Valley.”

Most importantly, through her neurologic treatment, Hayden gets to fully immerse herself in summer—swimming, boating, and even camping with her grandparents.

Seeing Hayden simply enjoy being a ten-year-old kid is what gives Dr. Joseph so much satisfaction in his work. “I’m inspired by a child’s ability to deal with neurological problems with so much courage and resilience,” he says. “Spending time with pediatric neurologists in medical school is how I became passionate about this practice, in particular epilepsy and sleep medicine. Since then, I’ve been hooked on helping my patients and their families understand their illness, heal and persevere.”

Pediatric Neurology at Valley Medical Center Now has a New and Improved Pediatric Epilepsy Monitoring Unit!  
Valley’s pediatric epilepsy services have been enhanced with a new Pediatric Epilepsy Monitoring Unit. Equipped with new, state of the art VEEG monitoring equipment, three new, private rooms are now dedicated to evaluating, diagnosing, and treating seizures through the use of 24/7 brain monitoring and when needed, infusion therapy.

Statewide, Valley’s is one of only four Pediatric Epilepsy Monitoring Units and one of three National Association of Epilepsy Centers accredited Level 4 centers providing complex neurodiagnostic monitoring and management, including vagus nerve stimulator management. Valley’s Pediatric Neurology Clinic offers a personalized approach to pediatric epilepsy care with wait times of only one to three weeks (compared to six month+ waits at other pediatric epilepsy centers in the region). Patients and parents have direct access to Kevin Joseph, DO, a board-certified, pediatric epileptologist and sleep medicine specialist and Judy Li, DO, a board-certified pediatric neurologist. Combined, Drs. Joseph and Li have nearly 20 years of clinical experience providing quality and personalized epilepsy and other neurologic care to children and their families.

Interested in Valley’s Pediatric Neurology Clinic? Visit valleymed.org/ped-neuro or call 425.656.5566 option 1, or toll free at 1.888.686.4964 option 1 .

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