TRUMBULL — It’s a class of brain disorders that more than 5 percent of the population will experience at some point in their lives, but few seem to know about it.
The condition is epilepsy, and 12-year-old Madeline “Maddy” Rondon is on a mission to spread the word that there are thousands of people in Connecticut who, like her, suffer from it.
A week ago, she journeyed to the state Capitol to tell legislators that she’s not alone. And on Saturday, she’ll be with about 500 other people in West Haven marching for the cause.
“My team is called Maddy’s Marchers, and we’re hoping to raise $3,000 this year,” she said. Sharon’s Walk, as it’s called, will raise money for the Epilepsy Foundation of Connecticut.
Madeline was first diagnosed when she was 9 years old.
“The episodes were usually in the evening, and at first we thought that she was just having a bad dream,” said Mandi Rondon, her mom. “But then she she has a grand mal seizure and we had to call 911.”
Bridgeport Hospital’s ER immediately put the parents in touch with Yale-New Haven Hospital, where Madeline had to spend a night wired up to a brain monitor.
“The next morning the diagnosis was confirmed — she had six episodes that night, even though she wasn’t aware of any of them,” her mom said.
“I knew there was something wrong a long time before that — I was hallucinating and I woke up screaming, but my parents told me that it was a bad dream,” Madeline said.
A visit to her pediatrician the day after that early episode was inconclusive. Seizures, after they pass, leave few clues.
As with many who suffer from the disorder, Madeline’s epilepsy is idiopathic, meaning that there’s no known cause. Epilepsy is a “spectrum condition” involving a range or related disorders. Some cases can be traced to heredity, some are caused by head injuries.
But most, like Madeline’s, have no obvious cause; she has no known relatives who have had it, for example.
Still, treatment strategies are similar for most with epilepsy. On the front lines are more than 20 anti-seizure drugs that physicians prescribe — the trick is finding the right drug or a combination of drugs for a particular patient.
In December, Madeline’s doctors switched her to a different medication, a tricky process, she said, because she had to be gradually weened off one while the next treatment began.
“The switch was hard,” her mom said. “We’ve been stable since December. She has to take a pill every 12 hours.”
It’s also important for epileptics to maintain a predicable schedule.
“I start getting ready for bed at about 8 o’clock, and it’s lights out by nine,” Madeline said.
There are a host of other triggers such as stress, minor illnesses like a head cold, alcohol, and, for women, menstrual cycles. Doctors recommend that epileptics keep a journal to track the things that seem to precipitate an episode. Sometimes exercise, yoga and meditation seem to help.
Madeline’s seizures aren’t completely out of the blue. When they happen, she has a few seconds’ warning to get on the floor, so she won’t fall and hit her head on furniture.
“Most of the injuries associated with the disease occur with falls,” she said. “There’s also some misinformation out there — a lot of people think that you have to stick something in the patient’s mouth to keep him from biting his tongue, but that usually causes even more problems.”
There are other misconceptions that people have about epilepsy — that you can swallow your tongue (impossible), that it’s contagious, that only kids can get it, and that people with epilepsy shouldn’t have significant responsibilities on the job.
The Epilepsy Foundation not only contributes to research, but also offers a raft of support services. One of these is Camp Courage, a deep-woods adventure for children in Connecticut with various disorders. For one week in the summer, children with epilepsy are there.
“It was a really eye-opening experience, because I got to see other kids with it — and a lot of them were a lot worse off than me,” Madeline said. “Some had seizures two or three times a day, and I also got to see what a person with a seizure looks like for the first time. It was great meeting other kids with epilepsy, too — I knew I wasn’t alone with this.”
Other than the strict bedtime schedule, Madeline, who’s naturally upbeat and cheerful, can lead a fairly normal life. Her teachers and coaches at Madison Middle School are aware of her situation, and the school has a dose of a drug, delivered by injection, in the event of a seizure. She plays sports and her friends, she said, have been very supportive.
She has one older brother and two sisters, one in high school, the other a pre-schooler.
“Some kids do grow out of it, so that’s what we’re hoping for,” Madeline said.