In many ways, Paxton Toves is a typical 4-year-boy \u2014 he has boundless energy, an inquisitive mind and a gregarious spirit. However, unlike most children, Paxton wears a monitor on his wrist that tracks the dozens of seizures he has endured every month since infancy \u2014 sometimes one a day.<\/p>\n
Paxton lives with Dravet syndrome, a rare form of severe epilepsy<\/a> associated with frequent, difficult-to-control seizures. With few effective treatments available for this condition, Paxton\u2019s family worked with his neurology team at Mary Bridge Children\u2019s<\/a> to enroll Paxton in a clinical trial at the MultiCare Institute for Research & Innovation.*<\/p>\n \u201cDravet syndrome is the most severe seizure disorder a child can have, and it comes with an increased risk of early death,\u201d says Steven Phillips, MD, a pediatric neurologist at Mary Bridge Children\u2019s and principal investigator of the trial. \u201cThere\u2019s a big push to develop treatments that help these kids do well and live longer.\u201d<\/p>\n At a month old, many babies are trying out different facial expressions, learning to hold their heads up and honing their eyesight. As Paxton worked toward these milestones, he experienced his first seizure.<\/p>\n Over time, the episodes increased in quantity and intensity, resulting in frequent visits to the emergency department and overnight hospital stays. The unpredictability of the seizures has been a particularly challenging aspect of this experience for Paxton and his family.<\/p>\n \u201cWe couldn\u2019t take him to the park or the grocery store, or really anywhere outside our home because we didn\u2019t know if he would have a seizure,\u201d says Eric Toves, Paxton\u2019s dad. \u201cSafely managing them in a public place is difficult.\u201d<\/p>\n Paxton\u2019s seizure disorder meant that his parents couldn\u2019t place him in day care or travel to visit relatives. As he grew from an infant into a toddler, he experienced developmental delays that affected his speech and behavior. And his family still didn\u2019t know why the seizures were happening.<\/p>\n Paxton\u2019s neurology team at Mary Bridge Children\u2019s helped the Toves family access a program to cover the cost of genetic testing. Those results helped point his doctors toward a diagnosis of Dravet syndrome.<\/p>\n \u201cDravet syndrome is caused by a mutation to the gene that controls a sodium channel, or pathway, in the brain,\u201d Dr. Phillips says. \u201cThe mutation causes cells in the membrane of this channel to malfunction, so sodium can\u2019t flow in and out properly. Sodium affects electrical activity in the brain, and if not regulated, can cause seizures.\u201d<\/p>\n While Paxton finally had a diagnosis, it didn\u2019t make managing his seizures any easier. At one point, the data on Paxton\u2019s wrist monitor indicated he had 35 grand mal seizures in a month. Grand mal seizures, also known as generalized tonic-clonic seizures<\/a>, typically cause a loss of consciousness and are accompanied by severe muscle spasms.<\/p>\n After trying several medications that failed to control the seizures, Paxton\u2019s neurology team recommended a phase 3 pediatric clinical trial for an experimental anti-seizure medication through MultiCare’s Research Institute.<\/p>\n \u201cWhen families choose to participate in studies like this, it may not only benefit their individual child. If the data we collect can help us pinpoint a medication that\u2019s effective in controlling seizures, then that\u2019s helpful for all children with Dravet syndrome.\u201d<\/p><\/blockquote>\n \u201cA lot of these clinical trials are only offered at a few sites around the country,\u201d says Dr. Phillips, who has been conducting anti-seizure medication research for over 30 years. \u201cOne of the goals of our pediatric epilepsy research program is to bring these experimental treatments to our community so families don\u2019t have to travel long distances to participate.\u201d<\/p>\n Clinical trials have different phases, and each has their own purpose. By phase 3, a new treatment has already demonstrated effectiveness in people through previous rounds of testing.<\/p>\n At this phase, investigators want to know how the new treatment compares to the current standard: Is it just as safe, or safer, and is it more effective? If yes, then the treatment will be approved by the U.S. Food and Drug Administration<\/a> for use.<\/p>\n The phase 3 trial Paxton joined is double-blind<\/a> and randomized<\/a>, which means he was assigned by chance to one of two groups: one received the standard treatment and another received the standard treatment plus the experimental treatment.<\/p>\n In this type of study, neither the trial participants nor the investigators know who is assigned to which group. This study design allows investigators to accurately compare treatments and helps eliminate potential bias.<\/p>\n \u201cWhen families choose to participate in studies like this, it may not only benefit their individual child,\u201d Dr. Philips says. \u201cIf the data we collect can help us pinpoint a medication that\u2019s effective in controlling seizures, then that\u2019s helpful for all children with Dravet syndrome.\u201d<\/p>\n The clinical trial is ongoing, and Paxton has transitioned into the long-term open-label extension phase of the study. During this phase, patients are guaranteed to receive the experimental treatment after first completing the double-blind portion.<\/p>\n While Paxton\u2019s family may not know whether he started out with the experimental therapy, they are grateful for the care they continue to receive at Mary Bridge Children\u2019s and the Research Institute.<\/p>\n \u201cPaxton\u2019s journey has been medically complicated, and there can be a lot of red tape that\u2019s associated with that,\u201d Eric says. \u201cBut Paxton\u2019s care team has helped us through all those hurdles and kept them from becoming additional stressors in our lives. They\u2019ve all just done an outstanding job of taking care of us.\u201d<\/p>\n To learn more about leading-edge research in epilepsy and other areas, visit the MultiCare Institute for Research & Innovation. Visit the Dravet Syndrome Foundation<\/a> to find out more about this condition and the progress toward effective treatments.<\/p>\n *The MultiCare Institute for Research & Innovation closed in November 2025. However, MultiCare continues to conduct research at <\/em>Pulse Heart Institute<\/a><\/em>,\u00a0<\/em>MultiCare Cancer Institute<\/a><\/em>\u00a0and\u00a0<\/em>MultiCare Mary Bridge Children\u2019s<\/a><\/em>, among other areas within our organization. To learn more about clinical trial opportunities, talk to your provider or visit\u00a0<\/em>ClinicalTrials.gov<\/a><\/em>.<\/em><\/p>\n","protected":false,"gt_translate_keys":[{"key":"rendered","format":"html"}]},"excerpt":{"rendered":" In many ways, Paxton Toves is a typical 4-year-boy \u2014 he has boundless energy, an inquisitive mind and a gregarious spirit. However, unlike most children, Paxton wears a monitor on his wrist that tracks the dozens of seizures he has endured every month since infancy \u2014 sometimes one a day. Paxton lives with Dravet syndrome, […]<\/p>\n","protected":false,"gt_translate_keys":[{"key":"rendered","format":"html"}]},"author":367,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[79,103],"tags":[],"class_list":["post-26063","post","type-post","status-publish","format-standard","hentry","category-profiles-stories","category-research"],"acf":[],"yoast_head":"\nA life-changing condition<\/strong><\/h2>\n
Finding hope through research<\/strong><\/h2>\n