When Zane Guillaume had his first spasm at about 4 months of age, it came and went very quickly. “His eyes locked up, and he extended his right arm rigidly,” says his mother, Holly Guillaume. “It was very brief, but I knew it wasn’t normal.”
The following day, as Zane was falling asleep, it happened again. “The second episode lasted much longer,” Guillaume says. “It wasn’t a typical convulsion like you see portrayed on television, so we weren’t sure it was a seizure. Our on-call pediatrician recommended getting a video and told us to take him to the medical center.”
In the emergency center of a local children’s hospital, Zane appeared to be normal. While Guillaume filled out paperwork, Zane started dozing off and experienced another episode, which she captured on her phone. After viewing the video, the attending neurologist admitted Zane to the hospital. A week later, he was discharged with a diagnosis of epilepsy and prescriptions for several medications.
But Zane’s spasms continued. “They were coming six hours apart, then four hours apart and by morning, they were only an hour apart and we couldn’t reach the on-call neurologist,” Guillaume says. “It was rush hour, and we went to the emergency center closest to us, not knowing then that each hospital is very different.”
The Guillaumes endured multiple physician office visits, hospitalizations and unsuccessful treatments before finding pediatric epileptologist Gretchen Von Allmen, M.D., medical director of the pediatric epilepsy monitoring unit at Children’s Memorial Hermann Hospital and director of the Pediatric Epilepsy Program and assistant professor of pediatrics in the division of Child and Adolescent Neurology at UTHealth Medical School. Guillaume considers the encounter a stroke of luck.
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