Zeno and his father came to our office for a custom cranial protective orthosis for Zeno, a 4 year old boy who has a form of childhood epilepsy called Lennox-Gastaut Syndrome. Lennox-Gastaut syndrome is a form of severe epilepsy that begins in childhood, and is characterized by multiple types of seizures, including drop attacks. On a typical day, Zeno has between 300 and 500 seizures. Lennox-Gastaut Syndrome is treatment resistant, and Zeno has tried many medications in the past to reduce his seizures, which provide a temporary reduction in seizures followed by reverting to 300-500 seizures per day. Zeno cannot walk independently due to the frequency of his drop attacks, but recently started using a body weight supported gait trainer to move around.
Zeno has never worn a custom cranial protective orthosis before, but wears a taekwondo helmet or a hockey helmet to provide some protection. Zeno has a history of injuries from his drop attacks, including most recently a broken nose and black eye from hitting his face in a drop attack. One of the major priorities of the cranial protective orthosis is to prevent future injuries to Zeno’s skull and face.
Zeno’s father had previously purchased an Empatica E4 wristband that provides real-time physiological data, including markers for seizures, but Zeno refused to wear the wristband. At Zeno’s father’s request, the wristband was integrated into Zeno’s helmet and was able to read the physiological data off of the skin on his forehead and his temple. We also integrated a GPS tracker and a GoPro mount into Zeno’s custom cranial protective orthosis at his father’s request, and look forward to seeing the video that Zeno takes of his day-to-day life! Zeno loved his new helmet, and scooted around our office in his gait trainer with a smile on his face.
Zeno and his father worked with Melanie & Carol to design this helmet with all the features requested. Zeno’s father would like more people to be aware of LGS and treatment options. Thanks to Zeno and his father for making us part of this.