But the child fell asleep again during a play date and appeared to be lethargic. After she fell asleep while eating lunch, Henkel called the doctor and took her daughter to the hospital emergency department, where an ear infection was diagnosed.
Then, just before the family was about to head home, Ann had a seizure: Her eyes popped open, staring. Several tests later seemed to indicate that she had suffered febrile seizures, convulsions brought on by a fever in infants or small children, according to the National Institutes of Health.
The next day, though, Ann had a second seizure and then four more after her parents returned to the hospital. The Henkels, of Coal Valley, were referred to specialists and given medications to control the seizures.
Three months went by until Ann suffered four seizures in one day. It was noticed that the seizures seemed to occur especially when the baby was sick, often with an ear infection, her mother said.
Then, in one three-day span during August 2012, Ann had 30 seizures. Those, too, were tied to an infection.
Finally, in January of this year, specialists at the University of Iowa Hospitals & Clinics in Iowa City diagnosed the little girl with a rare form of epilepsy: It is called pcdh19 female epilepsy, named for the gene that causes the neurological condition.
“There’s only 150-200 people in the world with this,” Henkel said.
Epilespy more common than many think
Epilepsy is a neurological disorder characterized by recurrent seizures, described on the website epilepsyfoundation.org as a “brief disruption of electrical activity in the brain.” It is more widespread than most people think: In fact, it’s the fourth-most common seizure disorder in the United States.
Dr. Charuta Joshi from Iowa City is a specialist in epilepsy, called an epileptologist. She notes that treatment for epilepsy has evolved over the years. There are several types of medicine used now. These may be categorized as either “preventative” or “rescue” medications, the latter coming into play when a person is having a seizure.
Those who have more frequent seizures must take their medications every day. Ann Henkel gets hers twice a day, two of which help with her seizures, and she gets a daily vitamin to boost her overall health.
Almost all seizures end in less than three minutes, Joshi said. If a seizure goes five minutes or longer, witnesses need to either call 911 or, in some cases, administer the rescue medication in the cheek, the nose or as a suppository in some individuals.
“We sort through these issues on the patient’s first visit to me,” the doctor said.
Joshi offers her patients both medical and non-medical therapies. For example, the doctor has a dietary program to treat epilepsy, using basics that date to biblical times. It’s a very high-fat, low-carbohydrate diet, she explained, kind of like the modern, Atkins or South Beach diets.
Other types of therapy include having a pacemaker inserted or undergoing brain surgery. Also, there are at least three new medicines that help stabilize a person with epilepsy, she said.
Still, there are a number of individuals with epilepsy who do not respond to treatments, the doctor added.
Family will get a therapy dog
Ann Henkel is now 3 years old and attends preschool. School officials have a rescue plan in case the child has a seizure.
Leslie, a former teacher, stays home with her children, including 1-year-old John. Her husband Kurt is employed by a major Quad-City firm.
Both parents worry about their daughter, and one worry is sudden, unexplained death, called SUDEP for short, which occurs in some people with epilepsy. For reasons that are not fully understood, a person with the disorder may suddenly quit breathing.
While that has not been documented in pediatric patients such as Ann, the Henkels remain concerned. They have purchased their daughter a special pillow that lessens the chance of her suffocating in her sleep. Also, Ann has a video monitor in her room that was purchased just hours after her parents received the diagnosis.
The family is scheduled to receive a seizure response dog, a golden retriever named Carver that is eight weeks old. After he is trained, Carver will sleep in Ann’s room and alert her parents if she has a seizure.
“It’s a life-or-death thing for us,” Leslie said.
Epilepsy awareness has a purple hue
The seriousness of epilepsy is eye-opening to people, Kurt said. The Epilepsy Foundation estimates that 1 in 26 people will develop epilepsy at some point in their lives.
More than 2 million people in the United States have epilepsy, with 150,000 cases diagnosed each year. Some 65 million people in the world have the condition.
The Henkels have decided to go public with their story in an effort to spread awareness of the condition. They have also adopted the color purple, which is used by the Epilepsy Foundation and associated groups and organizations as a symbol of awareness.
“We’ll have purple lights on our house in November,” Leslie said.