Special tricycle was returned to young owner suffering from seizures and Cerebral Palsy

The front wheel was damaged and the seat was torn.

But it didn’t matter to Allison Babiarz. When Crystal Lake police officers wheeled her missing red $2,000 trike back to her family’s home Monday evening, the 13-year-old’s broken heart mended in seconds.

Allison Babiarz, 13, and her mother Kim are happy to have Allison's Versa trike back. The trike was taken Sunday from the family's garage and Crystal Lake police found it Monday. “It’s great that it’s back. It’s kind of a relief. I’m very grateful,” said Allison, who can only ride a special-needs bike due to her cerebral palsy and seizures.

Kim Babiarz noticed that her only child’s Versa trike, designed for children with disabilities, was swiped from the family’s unlocked garage Saturday afternoon. Sgt. Dan Hulata did not know who took the trike but said officers found the sporty contraption in their inventory of recovered property.
Kim Babiarz, 44 -- who quit her job at a credit union recently so she could care for Allison full time -- was so distraught when the bike went missing, she hadn’t slept since the burglary. Allison was sick to her stomach and cried.

“I was like, 'Why did this happen to me?' It really hurts,” Allison said.

Now that the trike is back, Allison is looking forward to pedaling around with her parents. Allison cannot balance a two-wheeler because of her cerebral palsy.

The roughed-up bike looks like “someone took a joyride,” but it can be repaired, said Allison’s father Michael.

To Allison, the low trike with a high seat isn’t just about fun. The three-wheeler gives her the autonomy her peers enjoy.

“Maybe they [the culprits] thought they were just being cool or they thought it’d be a joke,” Allison lamented before the trike was found. “I need it back because that bike was allowing me to have the freedom that I wanted.”

Seizures in newborns

Compact, bedside brain-activity monitors detected most seizures in at-risk infants, researchers at Washington University School of Medicine in St. Louis showed.

That means the compact units could assist clinicians in monitoring for electrical seizures until confirmation with conventional EEG (electroencephalography), the researchers assert in an article published in the June issue of Pediatrics.

The smaller, more portable units are called amplitude-integrated EEG or aEEG monitors. They use only two or four scalp electrodes to detect the brain's electrical activity, instead of the 12 or 20 used with conventional EEG devices. They also filter and compress the raw signals from the electrodes to provide simpler, shorter readouts than conventional EEG monitors. aEEG machines are easier for staff to manage, and the monitors can more practically be run for longer periods. In addition, more medical facilities can afford aEEG devices because they have lower upfront and operating costs.

But until recently no one had studied whether aEEG was as accurate as conventional EEG for detecting brain seizures in babies. Seizures are episodes of abnormal brain activity that may or may not include involuntary muscle movements. So even if clinical staff members watch a newborn continuously, a seizure might be missed without the use of an EEG device.

In newborns, seizures can be an indication that something is wrong in the brain, which might result from a metabolic disorder or a compromised blood supply to the brain before or during birth, for example.

The Washington University researchers conducted a side-by-side comparison of aEEG with conventional EEG. They used both technologies simultaneously for an average of 18 hours per patient to monitor the brain activity of 21 newborns who had experienced seizures. They also compared three different aEEG setups: one that produced a tracing from only one channel, one that produced tracings from two channels, and a third that produced tracings from two channels but also included raw, uncompressed brain-wave tracings.

"We found that we could pick up seizure activity in most of the patients using aEEG monitors that included the raw signals," says lead author Divyen Shah, M.D., a clinical fellow in the Division of Newborn Medicine. "In most medical centers worldwide, conventional EEG isn't available because it's expensive and resource intensive. We've shown that when staff members have training in interpreting aEEG, it can be effective for monitoring electrical seizure activity in newborns."

With conventional EEG, the researchers detected multiple seizures in seven of the infants, and with aEEG plus the raw signals they detected most of those seizures (76 percent) in six of those babies. The seventh baby had only one brief seizure, which was missed by aEEG monitoring.
Although aEEG has the advantage of lower cost and ease of use, the study also showed that its compression of raw brain wave data can make certain types of seizures harder to detect. But, the research also demonstrated that this disadvantage can be largely overcome with the use of aEEG monitors that also output an uncompressed and unfiltered tracing.

That raw tracing provides a backup reading to check against any ambiguous reading from the compressed data.

The researchers found that aEEG plus the raw signals yielded better results than unsupplemented aEEG, which missed all of five seizures experienced by one of the babies. The research team emphasizes that although aEEG monitors can complement conventional EEG, they can't completely replace it for electrical seizure detection.

Next, the research team, headed by senior author Terrie E. Inder, M.D., associate professor of pediatrics and a Washington University pediatrician at St. Louis Children's Hospital, will use aEEG as a tool in a trial of medications for seizures in newborns. They will use different treatment options to determine the optimal therapy for these patients. -Washington University in St. Louis

Driving and seizures!

Research shows that people with epilepsy continue to drive despite medical restrictions. In a study from the Ohio State University Medical Center, 26 percent of patients with epilepsy reported having an accident due to a seizure and 19 percent said they were dishonest about seizures in order to drive. The study, published in the journal Epilepsy and Behavior, found that prior attitudes and behavior are difficult to change and participants’ main reason for driving was due to their occupation.

“Instead of focusing on the dangers of driving for patients, it is important to discuss with patients how to overcome perceived and actual barriers to transportation,” says Lucretia Long, author of the study and assistant professor of neurology at The Ohio State University Medical Center.

“Addressing health behaviors while counseling persons with epilepsy is also crucial.” The study also suggests that persons with epilepsy would benefit from employers’ assistance with workplace programs and legislation supporting transportation resources. Allowing people with epilepsy to work from home and providing adequate public assistance are a few options. The study found that 35 percent of patients said they were not confident to use public transportation.

Some feared the possibility of having a seizure, which increases the risk for injury while walking to public bus stations. In addition, a large percentage felt that family and friends were not available to assist with transportation needs.John Elliot is the co-author and clinical research data manager in the Department of Neurology at The Ohio State University Medical Center.

The study included a total of 213 participants who were asked to complete a 46-item questionnaire with all responses submitted anonymously. Epilepsy can result from head injuries, lack of oxygen during birth, brain tumors and strokes. However, according to The Epilepsy Foundation, the cause of epilepsy is unknown in 7 out of 10 people.

Furthermore, epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. This disorder affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated.

Camp welcomes children with seizure disorders

Brianna Sosa was halfway up the rock wall when the feeling hit. She knew what was coming. The seizures she experiences daily are familiar enough that she stopped her climb and made it down to the ground on time.

Within minutes, though, the 17-year-old was planning her next trip up the wall.

Sosa has epilepsy, just like almost everybody else at Camp Wee Kan Tu, which celebrated its 10th year this week at the grounds of Camp Wing in Duxbury.

The camp is run by the Epilepsy Foundation of Massachusetts, and it is the only camp in New England for kids with seizure disorders.

“Everyone here has seizures,” said Sosa, a counselor-in-training this year after four summers as a camper. “Nobody thinks it’s weird, so we don’t have to worry.”

Of all the challenges of epilepsy – strict medication schedules, attendant developmental problems, and the seizures themselves – the social stigma can be the most painful, especially for teenagers.
“Other diseases you can hide; seizures are right there for everyone to see,” said Eileen Salmanson, the camp’s co-founder. “It can be a very isolating disease.”

Not at Camp Wee Kan Tu. Seizures are an hourly occurrence here, and nobody points and stares.
“It’s like, ‘oh, well’ and back to playing kickball,” said Deb Mayo, a counselor who has lived with epilepsy for 45 years.

On its face, Wee Kan Tu looks like any other summer camp. A soccer game was under way on the field. In the dining hall, a cabin of 11-year-old boys were in the arts and crafts corner making scrapbooks. A banner for the camp talent show hangs over the stage.

A few things set the camp apart, though. “Epilepsy 101” is a scheduled activity, just like pool time or kayaking. The camp infirmary, stocked with gauze and calamine lotion at most camps, is staffed around the clock by two neurologists and three nurses. And four times a day, the head nurse makes the rounds, handing out dozens of pill cups to campers.

But all that is “just background noise,” said Geoff Fudge, a nine-year veteran of the staff.

“These kids have epilepsy the rest of the year; this week, they just go to camp,” he said.

Steven Shorrock, 10, climbed the rock wall and he has the picture to prove it.

“I’m just here to show that it doesn’t matter if you have epilepsy,” he said as he glued the photo into his scrapbook. “I can do the same things as other kids.”

The campers are not the only ones for whom the week at Camp Wing is a breath of fresh air. At least half of the counselors have epilepsy, and for many of them, camp is a learning experience.
Lisa Volkening, 31, was diagnosed when she was in fourth grade. But it wasn’t until she joined the staff at Camp Wee Kan Tu six years ago that she really came face to face with other people like her.

“I wish they’d had something like this when I was younger,” she said. “I spent so much time feeling awkward and not being a kid.”

Parents also benefit from the week-long camp, taking a break from the constant supervision and anxiety that are part of raising a child with special needs.

“It’s a gift to my husband and me,” said Gail Biancucci, whose son Brendan, 11, was at camp for the first time.

Brendan’s epilepsy is controlled, but at the cost of brain surgery that left him developmentally delayed and needing constant supervision. This week, says Biancucci, that job belongs to someone else.

“We can go to a movie or have dinner or finish a sentence or any of the other things that take a backseat with Brendan,” she said. “It’s a vacation for us, too.”
Liz Hoffman may be reached at lhoffman@ledger.com.

Air Canada's rules may cost little girl's life!

A window of opportunity appears to have closed for a five-year-old girl, who is suffering from a rare genetic disorder after Air Canada failed to allow her to board a flight to China, where she hoped to recieve an experimental stem cell treatment that may extend her life.

Seeking treatment for Batten disease, which is only available in China, Hailey and her mother Miranda Goranflo were headed to Beijing after making the trip from Louisville, Ky.

Batten disease is a rare and fatal genetic disorder for which there is as yet no cure. It begins in childhood, and people who suffer from it generally do not live past the age of 12. Patients commonly experience vision problems, seizures, clumsiness or slowed growth, among other problems.

Still, Hailey's family managed to raise nearly $100,000 for the trip to China, where the little girl was scheduled to receive the experimental stem cell treatment.

But when they went to board their Air China flight at Vancouver Airport on Monday, the airline wanted medical clearance.

That arrived the next day. But the next available flight was on Air Canada. But even with her doctor's assurances they refused to allow Hailey on board. Instead the airline demanded time to assess her situation.

But before that could happen, her condition deteriorated and she was rushed to Children's Hospital in Vancouver after suffering a seizure. On Friday the news got even worse for Hailey because no doctor in Vancouver would clear her to fly to China.

So on Friday night, she was scheduled to return to Kentucky via Medivac.

After this horrific ordeal, Miranda's mom can't help but think that if only Air Canada had bent its rules a bit, her daughter could be in Beijing now getting better, instead of going home, possibly to die.

"This was her chance to get better. This was her chance and she's missed it."

But Air Canada spokesperson Angela Mah defended the airline's decision not to allow Hailey on board the flight to China.

"Our first priority is always to ensure the safety of all of our customers and the crew onboard our flight,'' she said.

When informed that Batten disease is not contagious, she said the Airline will always err on the side of safety and caution.

Hailey's three-year-old brother Carter also suffers from the illness, as Goranflo describes on the family's website at http://haileyandcarter.wordpress.com/.

Young heroes saved their young cousin's life!

As the temperature climbed on a sunny afternoon, Parker Rice and Josh and Alex Hershberger splashed around in the pool at their grandparents' rural home between Greeley and Kersey, keeping one eye on their youngest cousin.

Five-year-old DJ Bohn had a history of seizures, but his cousins had never seen one firsthand and they wouldn't know how to deal with it if one came on.

But as the boys played, something went wrong.

"Sometimes he would dip his head in and then come back up just to get wet," Parker, age 8, said. "Then he dipped his head in and he didn't come back up."

While swimming on June 16, DJ had a seizure in the middle of the pool. His head sank under the water.

"(Our first thought) was to swim after him," said Alex, 7. "Then we got him out of the pool."
Together his three cousins struggled to pull DJ up the little ladder and out of the water.
Nearby, Bob Hershberger was working in the family garage as he saw the kids pulling his grandson from the pool. He ran as fast as his newly replaced knee would allow and helped get DJ out of the water and to a grassy spot.

His wife, Pat, called DJ's mom, Marie Riggins. DJ's grandparents were familiar with his history of seizures, and they got DJ to emergency care.

He spent the night in the hospital to ensure that none of the water had gotten into his lungs. He was released the next day with a clean bill of health.

A sigh of relief was shared by everyone, but even more so for his young rescuers.

"We were thinking about him," Alex said. "We wanted to know how he was doing."

Reflecting on the day, the three cousins called it a scary event. They described the scene as they watched DJ's head go under water and began to shake. But there was no time to panic. Instead they calmly got their cousin out of harm's way, Bob said.

"They just did it," Bob said. "There was probably more panic from us. Here I am, an old guy, and I was huffing it up that hill pretty good."

"They are very protective of him knowing his history."

Just more than a week after the incident, the four were already back into the water again Monday. Of them all, DJ seemed the most excited. Undeterred by his history, the 5-year-old described his situation very bluntly.

"I like the water, and I like swimming."