“I thought we had lost him”
Ed and Penny Emma of Sandwich are grateful they no longer have to worry when or if their son, Alex, is going to have a seizure. The episodes that plagued Alex, 28, who has Down Syndrome, over the past couple of years are behind him since his diagnosis of epilepsy and the start of medication to control his seizures.
Epilepsy is a chronic disease with surges in electrical activity caused by chemical changes in the brain that can produce seizures, according to the Epilepsy Foundation.
Alex’s diagnosis, which marked the end of the family’s search for answers, came about with the help of a new, comprehensive diagnostic tool, ambulatory EEG (electroencephalography) with video which Cape Cod Hospital neurologist Mathew Pulicken, MD, MHS, began using last year.
“Ambulatory EEG with video is more specialized than a routine EEG in that we get a significant amount of brainwave data, which can be missed during routine EEG testing, and it captures brain wave activity during sleep,” he said.
Ambulatory EEG with video is a monitor worn by patients for 48 to 72 hours. It records internal brain wave activity, as well as external activity during a seizure, with the aid of a video camera.
“The electrodes are placed on the patient’s scalp and covered with a cap,” said Dr. Pulicken. “The patient is given a video camera that they can set up to record when they are home and during sleep to capture episodes of seizure activity.”
Starts In Wisconsin
Alex had his first seizure in a hotel room in 2015 when he and his parents made a trip from Wisconsin, where they lived at the time, to Boston for a visit with his sister.
“We didn’t know that when someone is having a seizure, they hold their breath,” said Penny. “I thought we had lost him.”
Alex was checked at a Boston hospital and, after that episode, he was seizure-free for a couple of years.
Then he had some episodes at work.
“They mimicked a seizure, but when we brought him to the hospital to be evaluated and had an EEG, the doctors told us the episodes were psychogenic in nature (having a psychological rather than a physical basis) and didn’t warrant medication,” said Penny.
“Psychogenic seizures are non-epileptic and often considered a behavioral issue,” said Dr. Pulicken. “They are not associated with any abnormalities in brain wave testing.”
About six months before the family moved to Sandwich in March 2018, the seizures started occurring at night and more frequently. Over a period of four to five months, Alex’s parents called EMS three times.
“It was a very difficult time for us, in addition to the move,” said Penny. “We would be sound asleep at night and we would hear a piercing cry. We would run into his room and wait the seizure out with him.”
As for Alex, “I felt very tired, I felt like something was wrong in my head, it hurt and I was dizzy,” he said.
Dr. Pulicken Steps In
As the family connected with Cape Cod Healthcare providers, Alex began seeing Munir Ahmed, MD, FACP, an Emerald Physicians medical internist who then referred him to Dr. Pulicken.
Testing began with a routine EEG that takes about 20 minutes. It did not show any abnormalities and Dr. Pulicken decided a 72-hour ambulatory EEG with video was the next step.
Alex was diagnosed based on the one episode captured by the monitoring system, explained Dr. Pulicken.
“I only saw one true seizure, I started him on medication and he isn’t having any more episodes.”
Alex and his parents are now free from worrying about the next episode. They are thankful to Dr. Ahmed, Dr. Pulicken and his medical assistant, Gordona Lambert, CMA, for getting them through the diagnosis and treatment.
“They always got back to me when I called, especially Gordona,” said Penny. “If I didn’t have that, it would have been even more difficult. I am very grateful.”
“It’s a new lease on life,” added her husband, Ed.
Alex is back to feeling well and he can be found working as a greeter at Café Chew in Sandwich.