SPECIAL NEEDS PARENTING

SPECIAL NEEDS PARENTING
Ann Trakadas of Grafton feels forever indebted to a knowledgeable

Brendan Biancucci stranger who crossed

her path at precisely the right moment, several years ago.

"Those are the little miracles," she said of the chance meeting at a local pool, which changed her life forever.

While sitting poolside during swim lessons, Trakadas, a seasoned mother of five, was unaware that her infant son Alex was having a seizure. The passing stranger, a nurse, observed what Trakadas now knows were Infantile Spasms, a serious form of epilepsy. The spasm appeared to be a typical startle reflex Trakadas had seen in her other children and "was such a subtle thing," she said. Heeding advice, she immediately consulted a doctor. Her son, then 4 months old, was diagnosed with epilepsy.

Alex, now 8, is just one of the nearly 300,000 children in the United States under age 14 who are living with this condition.

"Epilepsy is by definition a disorder of the brain; seizures are its symptoms," said Susan Welby, Community Education Coordinator for the Epilepsy Foundation of Massachusetts and Rhode Island. "A diagnosis is given when seizures reoccur spontaneously over time." There is no cure for this common disorder, which affects all ages, ethnicities, and races. Treatment, most often in the form of anticonvulsant drugs, is intended to control or reduce the number and/or intensity of seizures.

Brendan Biancucci, with his sister. Brendan underwent surgery to help curtail the frequency of his seizures. His mother said the surgery was a miracle. "Fifty percent of people diagnosed with epilepsy have their seizures completely controlled by medication," Welby said.

While for the majority of others, medications control seizures to some degree. For individuals whose seizures are resistant to medications, other treatment options may include diet and/or surgery.

The epilepsy spectrum is as varied as the families who deal with its impacts. There are a number of different types of seizures, which can and do range in intensity. For some children, epilepsy "will be a temporary problem, easily controlled with medication, outgrown after a few years," according to the Epilepsy Foundation of America.

"For others, it may be a lifelong challenge affecting many areas of life." An individual's "...limitations are based on whether there is excellent (complete), good, or no seizure control," Welby said.

After Alex's diagnosis, the Trakadas' were faced with the dilemma of choosing between possible side effects from the drugs or continued seizure activity in their son's brain. They chose to medicate, and though Alex's peripheral vision was permanently damaged, his seizures were controlled.

Trakadas recently reflected, "Without a doubt, I would make the same choice."

Over the years, doctors have adjusted Alex's medications to address his ever-changing seizures. He is currently dealing with Complex Partial Seizures that for the most part can be controlled with medication.

"He's doing well," his mother said. "His last seizure was early this past summer."

Alex attends public school in an inclusive third grade classroom where he receives special education services. Though most children with epilepsy are able to participate in organized sports, these can be difficult for Alex due to his vision limitations. He enjoys video games, playing with neighborhood friends, and will soon join the chess club at school.

The Epilepsy Foundation of America advises parents of children with epilepsy "to meet with your child's teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur." Community Education Programs, such as Helping Other People with Epilepsy (H.O.P.E.), are available upon request through the foundation (www.epilepsyfoundation.org).

"A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference...With information, reassurance, and plenty of opportunity to ask questions, other children can also learn to take seizures in stride..."

Like Trakadas, Wenham parent Gail Biancucci's life changed in an instant. Eight years ago, while reading to 18- month-old son Brendan, she noticed his arms stiffen and shake repeatedly. Her "typically developing toddler" was experiencing a cluster of seizures that were "unmistakable and very concerning," she said.

The Biancucci's pediatrician advised them to "watch, wait, and record" any additional occurrences over the next couple of weeks. Further consultation and testing were necessary and a diagnosis of epilepsy was made by neurologists.

The road to seizure control for Brendan, whose condition is severe, (high on the epilepsy spectrum), was long and arduous, including countless medication trials, a specialized diet, and ultimately, brain surgery.

Initially, Brendan's Atonic (Drop) Seizures, characterized by total loss of muscle control, numbered 180 per day and proved resistant to countless medication combinations.

A second treatment option, the ketogenic diet, was more successful, reducing his seizure activity by over half. This rigid diet, administered under the care of nutritionists and neurologists, required that food be "measured down to the 10th of a gram" and was "a sacrifice for the whole family," Biancucci said. The blessing, however, was that after 17 months, they weaned Brendan from the diet, and he maintained the reduction of seizure activity.

Because seizure frequency was still debilitating and each recurrence "a moment in time when Brendan could not learn," doctors recommended he be screened as a possible surgical candidate," Biancucci said.

Brendan, who was four years old at the time, underwent a Subtotal Hemispherectomy in July 2001. Recovery was extremely challenging, but the operation succeeded in significantly reducing seizure frequency and intensity.

"The surgery was a miracle and we are tremendously blessed," she said. "He has amazed everyone around him."

Green-eyed with an infectious smile, Brendan, who turns 10 this month, attends private school in Woburn.

"Although he has developmental delays ... and will struggle with epilepsy all his life," his mother said, "he's learning independently, has self-help skills, and is (on the cusp of) learning to read."

The future holds great promise for all children with epilepsy. Through funding and research, new medications and technologies are continuously developed. Implanted devices that send electrical signals to the brain, such as the Vagus Nerve Stimulator, may be used to decrease the need for medications which often cause adverse side effects.

Optimism and perseverance are second nature to the Trakadas' and Biancuccis. For most of their sons' lives, these families

have searched for treatments, shared knowledge with others, and championed epilepsy awareness. "If the community around us knows more about epilepsy, Brendan's life can only be better," Biancucci said.

Sue Lovejoy is a Massachusetts-based

freelance writer.

Epilepsy Facts

+ Common nervous system disorder characterized by a variety of seizure types

+ From epilambabein, Greek for to seize or to attack

+ Over 2.7 million Americans have this condition

+ Approximately 300,000 children in the U.S. are living with epilepsy

+ Onset can be at any age and affects all ages, ethnicities, and races

+ Research is ongoing (for new treatments and/or a cure)

+ November is National Epilepsy Month

Source: Epilepsy Foundation of America

www.epilepsyfoundation.org