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Parents of epileptic child take on daily challenges

Hernando Today Correspondent

Published:   |   Updated: June 23, 2014 at 11:46 AM

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UntilNovember, Savannah Curtis of Brooksville was a typical 9-year-old who excelled in school, enjoyed playing outdoors and kept close watch on her younger brother who has severe autism.

“She was the healthy one,” said her mother, Terri Fava.

In early November, Fava received a call from someone at her daughter’s school who said Savannah had been found huddled on the floor of the computer lab, unresponsive.

Fava rushed to the school and took Savannah to an emergency room, where a CT scan was ordered. The scan came back normal, showing no damage to Savannah’s brain.

Savannah had no known health issues, Fava said. The seizure was preceded with no visible warnings. She and her husband were left dumbfounded.

Then, on a return from Shands Hospital in Gainesville where their son, Nathaniel, had gone for dental work, the family experienced what Terri described as frightening. The family was at a Chuck E. Cheese in Ocala, Fava said. She was catering to Nathanial, who is nonverbal and requires constant supervision.

Her husband was taking Savannah around the arcade, playing games. “He came around the corner carrying Savannah in his arms,” Fava remembered. She described her feelings of shock when she saw Savannah’s head was slumped.

Savannah had an extreme seizure while playing Mario Kart, Fava said.

Savannah was rushed to an emergency room then scheduled an EEG at All Children’s Hospital in St. Petersburg. The results were “off the charts, ” Fava said. Later an MRI uncovered an overexposed area on her brain that needed to be retested in six months.

Savannah was diagnosed with epilepsy and prescribed medications to offset the seizures.

But the family’s life has changed dramatically, and Fava is trying to adjust to new obstacles she faces with another child with special needs.

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According to Johns Hopkins Medicine, epilepsy is a neurological condition involving the brain that makes people more susceptible to recurring and unprovoked seizures. It affects as many as 3 million Americans.

A seizure occurs when part(s) of the brain receives a burst of abnormal electrical signals that temporarily interrupt normal electrical brain function.

The part of the brain affected and what happens during an episode determines which type of seizure the patient is experiencing. Two types of epileptic seizures are generalized and partial. In children, they can be simple or complex.

Focal seizures occur when abnormal electrical brain function takes place in one or more areas of the brain. They include simple focal seizures, where consciousness is not lost, and complex focal seizures where the patient may lose awareness.

The most common causes of seizures include:

♦ Birth trauma

♦ Congenital problems

♦ Fever/infection

♦ Metabolic or chemical imbalances in the body

♦ Alcohol or drug use

♦ Trauma or brain injury

♦ Infection

♦ Congenital conditions

♦ Genetic factors

♦ Brain tumors

♦ Neurological problems

♦ Drug withdrawals

♦ Unknown causes

Diagnosis of a epilepsy or a seizure disorder usually involves blood tests, electroencephalogram (EEG), magnetic resonance imaging (MRI), computed tomography (CT or CAT scan) and lumbar puncture (spinal tap).

Medications that control, stop or decrease frequency of seizures without interfering with a child’s normal growth and development are the typical treatments for epilepsy. But medications must be monitored to prevent side effects.

Marissa Bloom, of Brooksville, has lived with the severity of epilepsy since her daughter’s birth. Zoe, now 8, had a severe brain injury at birth due to lack of oxygen. She was transported to All Children’s Hospital in St. Petersburg, where she was put in an induced coma to monitor her seizures.

Zoe was then diagnosed with epilepsy, or seizure disorder.

But Zoe’s symptoms can be extreme and her family is forced to remain alert for seizures that could be life threatening. “Major factors in her seizures are lack of sleep, sickness and stress,” said Bloom.

“Sending her to school scares me because I never know if the teachers and aides will catch the seizure when it happens,” Bloom said. “I’m always scared that a tonic-clonic seizure will decide to happen during the time she is away from me. We carry emergency medicine everywhere we go just in case.”

While most seizure disorders are well-monitored by medications and regular visits to neurologists, complications are always a possibility. Both Bloom and Fava have experienced problems with their children’s adjustments to medications or adverse reactions, including mood swings.

They also have become their children’s main advocates while fighting an often misunderstood medical condition that could become an emergency if not taken seriously.

Fava said she worries about a lack of urgency at her daughter’s school. And Bloom said she constantly watches her daughter to ensure she is safe.

“Our life is forever changed by the diagnosis of epilepsy and a brain injury,” Bloom said.

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