City sued for suspension of firefighter with seizure disorder

Rich Lord covers city government and politics. In addition to covering the mayor and City Council, Rich has primary responsibility for covering the Pittsburgh Housing Authority, Pittsburgh Water and Sewer Authority, and Pittsburgh Parking Authority. Rich has been writing about Pittsburgh's civic issues since the mid-1990s, working for a variety of publications before joining the Post-Gazette in 2005. He also authored a book on the subprime lending industry, American Nightmare: Predatory lending and the foreclosure of the American Dream.

Firefighter with epilepsy sues city after being suspended

Thursday, February 21, 2008

By Rich Lord, Pittsburgh Post-Gazette

A 27-year veteran of the Pittsburgh Fire Bureau filed suit in federal court Tuesday alleging that he was illegally suspended from his job following a diagnosis of epilepsy.

Fire Capt. David J. Cerminara, 51, of Banksville, said yesterday that he is running out of the sick time and vacation he has relied on since being placed on involuntary leave in April.

In his lawsuit, filed by attorney Samuel J. Cordes, he alleges that the city violated the Americans With Disabilities Act by not returning him to work, and demands that he be allowed to go back on the job, with back pay and compensation for distress.

"To just throw somebody out after 27 years because they've had a seizure, it's unheard of," Mr. Cordes said. "The city has an obligation to accommodate any disability."

He said Capt. Cerminara had a seizure in March, but was put on medication and released to return to work by his neurologist. The complaint alleges that a doctor paid by the city then wrote to Capt. Cerminara's neurologist, indicating that the city requires that a firefighter be off seizure medications and seizure-free for one year before he can work.

Mr. Cordes said that standard is no longer espoused for veteran firefighters by the National Fire Protection Association and violates federal law. The Epilepsy Foundation has criticized governments that bar people with seizure disorders from police and fire jobs.

"It excludes people with epilepsy or seizures from serving as firefighters when they're perfectly capable of doing the job," Mr. Cordes said.

"There have been gentlemen before who had seizures who went right back to work," Capt. Cerminara said. "They put me on medication, and I haven't had any problem since."

Administration officials said they hadn't seen the complaint and could not comment.

"This is a 27-year veteran who has been put through quite a lot of hell over nothing," Mr. Cordes said. "He's within eight days of having no money whatsoever, and he's done nothing wrong."
Rich Lord can be reached at rlord@post-gazette.com or 412-263-1542.

Information on Febrile Seizures

No one should ever have to witness their baby stop breathing and turn blue - ever. I think there should be a law against it, strictly enforced by God (regardless of which god or gods your may subscribe to). My world changed, and a small part of me died last week, when at roughly 4:15pm on February 12, I had joined the ranks of the parents whose children are the 1 in 25 that experience febrile seizures.

We were at the pharmacy picking up a prescription for my almost two-year old son's ear infection when the convulsions started. One second he's laughing, next second his arms and legs are jerking about, his eyes are rolling back into his head, and the colour started to drain from his face.
Andrew then stopped breathing, and went a horrific shade of blue. I felt my world shatter, like broken tempered glass reduced into a thousand pieces: I thought my son was dying or already dead. I felt horribly empty and useless.

My mind wandered to walking into our house, seeing his little shoes by the door, without him in my arms. I heard myself saying, "No. No. No." I knew it wasn't time for that now, I had to do everything I could to keep him with us. Once the 911 call was placed, I kept kissing his head, saying, "you're going to be OK, stay with mommy ... mommy loves you."

I had to then place another call I thought I'd never have to make, this time to my husband, "Andrew is having convulsions and has stopped breathing, please get here..." I tried desperately to make myself understood through hysterical tears.

Every second was like molasses in February. Crying and screaming didn't help, nor did looking around frantically for the ambulance, so I focused on doing 'something'. I tried scooping his airway, to make sure he wasn't choking (not a good idea, because he unconsciously bit down on my finger harder than I care to remember). Then I tried talking to him soothingly, telling him that I loved him, kissing his forehead and pleading with him not to leave us.

A small stream of blood and saliva rolled out the side of his mouth and he pushed out a series of pitiful, agonizing moans. He was breathing again! In the ambulance I watched my son's chest intently, worried that if I looked away, he would stop breathing again.

Thank goodness we had called the ambulance, because there was a van overturned en route to the hospital and we wouldn't have gotten through. Thank goodness our ER was open - we as a community cannot let our ER close - it is simply not an option for an acceptable quality of life for any of us.

In the ER, Andrew was still not back with us. He was dazed. When his eyes were open he was looking off somewhere, but not focusing. He looked scared when we would talk to him. "I don't think he can see," I whispered to my husband. He was admitted to the pediatric unit for the night.
While I went home to pack up a blanket, stuffed toy, and pyjamas to make the hospital more like home for the night, my husband read up on febrile seizures.

According to emedicinehealth.com: "Febrile seizures, also known as convulsions, body spasms, or shaking, occur mainly in children and are caused by fever... the onset is dramatic, with little or no warning."

Dramatic indeed, that may be the understatement of the year. Other highlights from the website included the following facts:

Roughly 2-5 per cent of children will experience a febrile seizure.

Most of these episodes last 1-5 minutes.

Of those who have one, 30-40 per cent will experience more seizures. Febrile seizures start as early as three months and children outgrow them by age six.

The seizure itself is almost always harmless.

About 25 per cent have a first-degree relative with a history of febrile seizure.

My son was released from hospital the next day. With him back in our care, I busied myself learning what to do if it happened again. I now diligently stock drugs for fever management, and will be quick to remove his clothing and apply cool cloths to his head and sponge down his body.

If a seizure starts, here's what I'll do. Put him on his side on a soft carpet, or on a bed where he can't roll off.

Call 911 if he has serious difficulty or stops breathing, starts turning blue (cyanosis), or if the seizure lasts more than five minutes.

Remove food or pacifiers from the mouth. Don't try to put anything in their mouths, or restrain their movements.

Time the seizure (length of seizure is important). Watch to see if all four limbs are convulsing or whether it is 'localized' to the face or one side of the body. Watch their eyes (not sure why, but the doctor asked me if they fixed on one spot, went to the side or rolled back).

After the seizure, take the child to see a medical professional.

Now, I am almost counting the days until Andrew's sixth birthday, to close the painful chapter on my boy convulsing, not breathing, turning blue and becoming non-responsive in front of my eyes. I'm having a hard time getting past what I had to witness, and have even found myself avoiding being in the room with him, because I don't want to see it happen again. Anytime I have a flashback, I try to remember that we are celebrating life, and his second birthday in less than two weeks.

I have nothing but thanks for everyone that helped us through the event, including everyone around me now allowing me to be human and a little more fragile than I care to admit. When Andrew blows out his candles on March second, you can probably guess what I'll be wishing for.

Nadine Robinson is a freelance writer and a marketing and communications consultant. Her column appears every other Wednesday.

Contact her the.ink.writer@gmail.com

Nadine Robinson

Article ID# 909445

Hypnosis vs. seizures

It was no way for an 11-year-old to live. For a month the boy had endured daily episodes of uncontrollable jerking and foaming at the mouth, and his physicians at Lucile Packard Children’s Hospital were concerned that the boy had epilepsy. Before starting the boy on a lifetime of anti-seizure medications, though, they turned to an unconventional diagnostic tool: hypnosis.
“Children are highly suggestible and they have great imaginations,” said Packard Children’s child psychiatrist Richard Shaw, MD. “We’ve found that if we suggest that they are going to have one of their events while they are in a hypnotic trance, they will usually have one.”

But wait. Aren’t physicians supposed to try to STOP seizures rather than searching for new ways to cause them? In a word, yes. But in order to treat seizures effectively, doctors must learn which parts of the brain are causing the trouble. Many children who seem to be having epileptic seizures are actually having an involuntary physical reaction to psychological stress in their lives. These events require a vastly different treatment than do true epileptic seizures.

The only way to pinpoint the true cause is to monitor the child’s brain activity during an event. Connecting a panel of electrodes to a child’s scalp is relatively easy and painless. Conducting a “seizure watch” of indefinite length is another matter.

“It’s very difficult for parents to spend three or four days in the hospital hoping their child has a seizure,” said Packard Children’s chief of pediatric neurology, Donald Olson, MD. “It puts them in a very uncomfortable place emotionally.” Furthermore, some hospitalized children, removed from the very stressors that may be causing the events, never have a seizure-like event.

Hypnosis can speed the process considerably, say Shaw and Olson. Together with former medical student Neva Howard, they tested the procedure on nine children between the ages of 8 to 16 whose seizure-like events included twitching, loss of consciousness, shaking, jerking and falling. Their results were published online in January in Epilepsy & Behavior. The physicians needed to know whether these were true epileptic events, which are best treated by medication, or non-epileptic events caused by psychological stress or other neurological problems.

“We can’t always distinguish epileptic from non-epileptic events visually, or through descriptions by family or friends,” said Olson, an associate professor of neurology, of neurosurgery and of pediatrics at the Stanford University School of Medicine. “But regardless of the cause, these are disabling, life-altering events that need to be treated.”

The authors believe that, although hypnosis may not work for every child, the technique is an important tool that can speed proper diagnosis and treatment for children suffering from seizurelike events.

To hypnotize the subjects, Shaw, an associate professor of psychiatry and behavioral sciences and of pediatrics at the School of Medicine, first used a combination of deep breathing and progressive muscle relaxation to induce a state of relaxation and deep focused attention in the subjects. He then used a combination of imagery and suggestion to induce one of their typical seizure-like events.

Children typically visualize being at one of their favorite places—for one teen, it was on a beach in the Bahamas. After a hypnotic trance was established, Shaw would then direct the child to recall the feelings or events that usually precede a typical seizure. Electrodes on the child’s scalp recorded their brain activity during the session.

In eight out of nine cases, Shaw could successfully trigger a seizure-like event with this procedure. After an appropriate monitoring interval, Shaw then directed the hypnotized child to “return” to his or her favorite place and the episode would stop. Using this technique, the physicians found that all eight of the subjects were experiencing non-epileptic events.

“We had a number of clues that these particular children might not have epilepsy,” said Olson, “but hypnosis helped us confirm our suspicions.” Physicians begin to suspect causes other than epilepsy if an individual has a variety of episodes, if the person’s cognition is unaffected despite frequent seizures or if the person has a pre-existing psychiatric diagnosis.

Were the kids in the study relieved to find they didn’t have epilepsy? “Yes and no,” said Shaw. “It’s important to explain very clearly that although these events are psychologically based, they are completely out of a child’s control.” He and Olson compare the events, which are a type of condition called conversion disorder, to other well-known ways that stress and emotions affect other bodily functions, such as migraines, ulcers and blushing.

Stanford is part of an ongoing multi-center study of these non-epileptic events to better understand their causes and possible treatments. For now, Shaw often couples psychotherapy with self-hypnosis lessons to teach children how to avoid the events.

“When they’re feeling out of control, this is a tool they can use. They know that they were able to ‘turn off’ an event during the initial hypnosis, and that gives them confidence to try it themselves,” said Shaw.

In general, people are growing more comfortable with the idea of hypnosis in a medical setting, said Olson. “The first reaction of many people may be to equate hypnosis with some sort of black magic. But once we explain the reasons and benefits, they’re very accepting.”
Adapted from materials provided by Stanford University Medical Center.

Truck driver charged with manslaughter for not taking medication for seizures

A New Jersey garbage truck driver was charged with manslaughter on Wednesday after a truck he was driving in Manhattan on Tuesday veered out of control, jumped a curb and killed two tourists from England, the police said.

Investigators said that the driver, Auvryn Scarlett, 52, of Irvington, N.J., had suffered a seizure, and was either unconscious or losing consciousness when he lost control of the garbage truck. They said that he was charged because he had not taken prescribed medication that he needed to prevent such seizures.

The crash took place at 10:28 p.m. on Tuesday on West 35th Street, between Fifth Avenue and Avenue of Americas; it was a frigid, snowy night with slick driving conditions across the city. The police said that Mr. Scarlett’s truck, owned by Action Carting Environmental Services of Newark, was traveling west, and struck lamp posts and storefronts before striking three people.

The police identified the two who died as Andrew Hardie and Jacklyn Timmons, both 47, from Yeovil in southern England. They were hit on the sidewalk near the entrance to the hotel where they were staying, the Comfort Inn Manhattan at 42 West 35th Street. They were scheduled to check out of the hotel on Wednesday.

The other person who was hit, Abayomi Henderson, 23, of Queens, was also on the sidewalk nearby. He was taken to Bellevue Hospital Center, where he was in serious condition, the police said on Wednesday.

Paul J. Browne, a police spokesman, said another man was in the cab of the truck driven by Mr. Scarlett when it lost control. Mr. Browne said the passenger, whose identity was not disclosed, became alarmed when Mr. Scarlett behaved erratically and began to foam at the mouth. The passenger tried to wrest the steering wheel away and take control of the truck, but was unable to prevent it from leaving the street, Mr. Browne said.

The passenger was not injured. Mr. Scarlett did not sustain serious injuries in the crash, but was taken to St. Vincent’s Midtown Hospital for treatment of his seizure and medical ailment. The police said they were uncertain of the type of ailment from which he suffered. Mr. Scarlett remained at St. Vincent’s on Wednesday night.

Phone messages left at a number listed under Mr. Scarlett’s name were not returned Wednesday. Officials of Action Carting did not return a phone call.

The police said that Mr. Scarlett told investigators that he had voluntarily stopped taking his medication.

Mr. Scarlett holds a commercial driver’s license in New Jersey that is in good standing, and his records do not indicate any past issues involving seizures or other medical problems, said Kevin Cranston, a spokesman for the New Jersey Motor Vehicle Commission.

He said that anyone applying for a commercial driver’s license in New Jersey must provide a “fitness statement” from a doctor, and that it must be renewed every two years. Any commercial driver who is the subject of complaints about impaired driving because of a medical condition must undergo a medical review, he said.

“Obviously, this is a major incident involving fatalities and is something we would look into,” Mr. Cranston said. But he said that if Mr. Scarlett was “someone found to have recurrent seizures, there would have been automatic disqualification” of his commercial license.

Federal rules apply to commercial truckers who cross state lines. Those drivers are required under federal law to obtain a certificate indicating that they do not have a debilitating medical condition, and the certificate would have to be renewed every year, said Duane DeBruyne, a spokesman for the Federal Motor Carrier Safety Administration.

On their way to cure seizure disorders?

When Lauren Axelrod was just 7 months old, her mother, Susan, found her one morning limp and blue in her crib. She had suffered a night of uncontrollable epileptic seizures that had no known cause and would forever change their lives.Now 26, Lauren Axelrod has over the years received 20 drugs that did not work. She also endured countless hospitalizations and medical procedures, special diets -- even a neurological procedure in which electrodes were implanted in her brain.

As they negotiated this difficult path, Susan Axelrod and her husband, David, of Chicago and other parents of children with the disease, decided to take action. They founded Citizens United for Research in Epilepsy, an group dedicated to spearheading a search for a cure.
Since its inception in 1998, CURE has raised more than $8 million to fund research and other initiatives to find a cure. Susan Axelrod said the group also wants to dispel common misconceptions about the disease.

"In general, the public believes that epilepsy is a benign and very treatable condition," she said. "Very few people know that almost half of all epilepsy patients do not experience seizure control, and that often, when they do have their seizures under control, it is at great cost in terms of debilitating side effects from anti-seizure medications."Susan Axelrod said every seizure can cause damage to the brain and is potentially life-threatening.Lauren Axelrod is cognitively and developmentally delayed.

However, at age 18, she was put on a new medication that has stopped her seizures. Although Lauren's disabilities still are profound, and she is not able to live independently, Susan Axelrod said her daughter's freedom from seizures has had a positive impact on her life."She has made great strides cognitively. We have been able to reduce her total amount of medication, and she doesn't live in the seizure- and medication-induced fog that she did for so many of her formative years."

CURE is marking its 10th anniversary with a fundraising dinner that will start at 5:30 p.m. Feb. 29 at the Field Museum, 1400 S. Lake Shore Drive, Chicago.The event will include a reception, commemorative program and dinner. Guests will be invited to view museum exhibits. Tickets are $325 per person. Visit http://www.CUREepilepsy.org or call 312-255-1801.

VOLUNTEERS*

The DuPage Senior Citizens Council needs volunteers to serve sandwiches and soup to seniors. The Community Dining Program provides seniors over age 60 with sandwiches, hot soup, sides, beverages and the opportunity to socialize. It serve more than 300 meals daily at its 20 nutrition sites.

Earlier this year, the council incorporated the sandwich program to offer more variety to seniors. Call 630-620-0804 to make a reservation for lunch or to volunteer.*Free tax preparation will be offered from 8 to 11 a.m. Saturday in the Dunham Hall lobby at Aurora University, 1400 Marseillaise Pl.

Thirty-five business students and professors will help prepare federal and state tax returns for people earning up to $50,000 through the Internal Revenue Service's Volunteer Income Tax Assistance program. A Social Security identification number is required. Other sessions will be held from 8 a.m. to 11 a.m. Feb. 23, Mar. 1, 15 and 29; and April 5. Bilingual students will provide translation for people who speak Spanish, Russian, Italian and Albanian.

Before preparing returns for the public, college students complete 24 hours of classroom training, which includes preparing more than 50 sample federal and state returns.

Call 630-844-6895.

FUNDRAISERS*

The 10th annual Big City Night Gala to benefit Aspire Children's Services will be held Feb. 23 in the Hyatt Regency, 151 E. Wacker Drive, Chicago. The group provides an array of therapies, educational programs and other support to children with developmental disabilities and delays and their families in the western suburbs. The event will be held from 6 p.m. to midnight and will include dinner, dancing, live and silent auctions and a raffle. Tickets are $150 per person. Call 708-547-3575.*

The Downers Grove Junior Woman's Club will hold the ninth annual Taste of the Town at 6:30 p.m. Feb. 29 at Bobak's Signature Events & Conference Center at Seven Bridges, 6440 Double Eagle Drive, Woodridge. This fundraiser includes samplings from local restaurants and catering businesses.

The event will include a live and silent auction and raffles. The money raised will go to fund scholarships and support organizations such as Court Appointed Special Advocates, food pantries and shelters. Tickets are $70 per person.

Call 630-632-5345 or visit http://www.dgjwc.org .

*Hesed House will hold an open house to celebrate 25 years of providing shelter to the homeless through its Public Action to Deliver Shelter. The event will be held from 1 to 4 p.m. Feb. 24 at 659 S. River St., Aurora. Tours will occur every 30 minutes. The ministries of Hesed House exist through volunteers from more than 70 faith communities, numerous groups and individuals.

The open house also will provide an introduction to new volunteers, companies and church groups.

Call 630-897-2156 or visit http://www.HesedHouse.org .

THOSE MAKING A DIFFERENCE*

Employees of Kraft Foods recently volunteered at the Peoples Resource Center in Wheaton. They were among 1,200 workers who took part in a day of volunteering to help 50 non-profit organizations in the Chicago area.

At the resource center, volunteers worked in the clothes closet and literacy center and stocked canned goods and other items in the food pantry. The resource center is a non-profit group that helps people living in need throughout DuPage county. Last year, the center helped more than 20,000 DuPage residents meet their basic needs.

Center services include emergency rent and mortgage assistance and empowerment programs to help people break the cycle of poverty. These programs include computer training and access, literacy sessions, job-search assistance and art classes.*

The DuPage County Forest Preserve District benefited from the efforts of 692 full-time volunteers and 2,448 one-time volunteers in fiscal year 2006-07. They donated a total of 68,231 hours to the district's eight volunteer programs and saved $1.28 million.

Rare seizure disorder affects athlete's life

It’s not hard to miss Max Freer at a Champion basketball game. He dresses like a coach, yells like a fan and cheers on the Golden Flashes like a teammate. But unlike other seniors on the team, he performs the role of all but one — player.

In 2002, after suffering chronic seizures for a year-and-a-half, Freer was diagnosed with Rasmussen’s Encephalitis, a rare disorder of the central nervous system that inflames one side of the brain. For Freer it was his left side. The severity of the disorder leaves only one suggested treatment: a hemispherectomy. In laymen’s terms, the 11-year-old had to have the entire left side of his brain removed.

Until 2000, Freer was a normal, fully functioning fifth-grade student. He was involved in soccer, baseball, basketball and played percussion in the school band. In November of that year, he suffered his first seizure. By August of 2001, the seizures and the medication increased. Freer was now suffering a seizure a day and was pulled out of Champion Middle School to be home schooled.

By April of 2002, he was having as many as 20 seizures per day. At this point, his parents, Scott and Debbie, took him to the Cleveland Clinic where he was diagnosed. In May, the Freers flew to Johns Hopkins Hospital in Baltimore, where the disease was confirmed. Neurologist Holly D. Maggiano M.D., said once the seizures reached this level, surgery is the only course of treatment.

“When the seizures begin, we try meds first, but with Rasmussen’s, they continue and the inflammation of the brain will infect the motor strip of whichever side of the brain is infected,” Maggiano said. “The patient will develop weakness if the seizures keep occurring and the patient will essentially have stroke-like symptoms, if the seizures continue. The surgery is a last resort. It’s not a common surgery.”At the time of Max’s surgery, he was only the 112th patient in the history of Johns Hopkins to have the procedure done.

With the removal of the left side, Max lost the ability to do many day-to-day things. The left side of the brain controls the right side of the body as far as strength sensation, the right side of the visual field and many analytical skills. Because of this motor-skill loss, Max can’t use his right hand and drags his right leg when walking. But the biggest loss for Max was language. His mother said during rehabilitation he had to start from scratch.

“He had to learn how to walk, how to sit, how to hold a fork, pretty much everything,” Debbie Freer said. “And he had to relearn how to speak. He had to relearn his ABC’s. The language was the biggest thing. He now talks in phrases, not full complete sentences.” Max’s speech will probably be impaired for the rest of his life. Sentences containing 10 words, Max will say in four or five.

LOOKING OUT FOR A FRIEND

Only four months after his surgery, Max headed back to school for two days a week. By his eighth-grade year, he was back full time. For Sean Sumner, a lifelong friend and classmate of Freer’s, the hardest part was seeing his friend and not being able to do more. “I knew him when he was ‘normal’ and I knew how hard it was going to be,” Sumner said.

“When he first got sick, the teachers pulled me aside and told me about everything and asked me to watch over him. I wasn’t scared when he was having the seizures. But I watched over him. I felt it was my responsibility as a friend to take care of him. At first, after he had the surgery, he couldn’t even pick up a fork. It hurt my feelings that I couldn’t help him.”Once back at school, Max was placed in a special education program.

Because they had home-schooled their son for two years, they decided to allow him to advance with his class. And letting their son stay with his classmates was good advice.“One of the benefits of living in a small town is that we knew a lot of people and people knew Max so putting him back in school was not as hard,” Debbie Freer said.

“The support system said it wouldn’t be advantageous to keep him back with a new group of kids. They said ‘let him go, let him stay with his group.’ And probably that was the best piece of advice we got was letting him move up with everybody else.”BACK ON THE FLOORBesides re-learning day-to-day functions Max also returned to athletics, though not in the form he would have before his surgery.

In his eighth grade year, Max was given a jersey on the basketball team, but because of the limited motor skills, he didn’t see much playing time. But that didn’t hinder former coach Todd Gibson. “My dad (Champion football coach John Gibson) had coached his dad and I knew through the kids about Max,’’ Gibson said. “At some point, I talked to his dad and he asked if he could be around the guys. I had to make cuts for the team, but Max was just such a fun kid to have around, so we kept him around.”

Though Max only got in one game that year, the very last, that didn’t stop him from coming to every team practice and showing off his skills, with only the use of his left hand. “I think he got in the game one time, and unfortunately we were getting beat by a lot,” Gibson said. “In practice, he would shoot around while we were practicing.

Everyday he and I would have a 3-point shooting contest. He usually beat me, and he was only using his left hand. I don’t know what that says about my skills, but it does say something about his!”Even today, Champion varsity basketball coach Dan Bubon and teammates said Max is probably the best shooter on the team. He showed those shooting skills his freshman year when he scored his first, and only, basket in high school.

Teammate Markel Vaughn remembers it like it was yesterday, because he said Max talks about it on a daily basis. “Ninth grade, he actually played. We would put him in at the end because we won a lot of our freshman games,” Vaughn recounted. “I remember, we threw it to him and he shot it in. It was about an 18-footer and it was at the buzzer against Hubbard. That was pretty exciting.”Max said it wasn’t as easy as Vaughn made it sound. “I first dribbled, then I cut, and around. Then shot and whoosh!,” he said.

His mother is quick to point out the vivid memory wasn’t as easy as the now 18-year old made it sound. “One time I air balled,” Max admitted with a smile. So what started as getting a jersey in eighth grade has grown into him being a permanent fixture on the sideline. Being against more physical athletes at the varsity level, it was impossible for coaches to give him a spot on the roster. But, he still had a place on the football and basketball teams as a manager. But as John Gibson said, Max is much more than a manager.

“Because he has such athletic ability, we never really wanted to put that ‘tag’ of a manager on him,” John Gibson said. “He was an associate coach and he was our spirit guy. He is so intimately related to the seniors. The biggest thing was because we went through a lot of struggles in the past few years, and in some of our darkest hours, Max would come in and pick up our spirits. He was the spirit coordinator.” Being a multiple letterman on the football and basketball teams, Kris Wildman remembers those tough times.

But he said what kept his spirits up was simply looking at Max on the sideline, always with a smile on his face, always cheering them on. “It means a lot seeing him there,” Wildman said. “Because if you were in his position, would you still care that much and be that happy and supportive? You can’t get down on yourself when he’s there keeping your moral up.”Keeping the moral up is just one of the many things Bubon said Max brings to the team.

“He’s got tremendous energy,” Bubon said. “He’s real close with the seniors, especially Kris, Markel, Joe and Sean. Those four would go nuts if he weren’t around. And obviously, the younger kids get accustomed to his energy. Sometimes it’s a bit too much, but it wouldn’t be the same without him.”Thinking about football or basketball season without Max is absurd to Vaughn. “He’s so out of control and pumping everybody up,” Vaughn said.

“The thing is with Max, he is a member of the team. During the Lakeview football game, he’s out there crying with us after we lost. He cares about all of us. The last game of the football season, he was crying with us because it was his last game too. He means so much to all of us. I couldn’t see football or basketball without him.”And Max couldn’t imagine it either. He likes being a part of the team and on the bench cheering on his teammates. He’s at every practice, every game and every team function. Before each game, he’s out on the court with them, pumping up his team because, as he said, “They’re my boys.”

But one game this season, his love of Champion basketball was challenged with his other love, the Duke Blue Devils. “Max said he wasn’t coming to one of our games because the Duke game was on,” teammate Joe Cvengros said. “I told him he would have to tape it because he couldn’t miss our game. He’s a Duke fanatic. He can’t go a day without saying something about Duke.”Max taped the game because as he said, “Champion is forever.”

Max is prepared to graduate in May with the rest of his classmates. Following graduation, he and his parents said he will attend the Trumbull Career and Technical Center to study an undecided trade. He’ll miss being on the bench and sidelines during Champion games, but is excited to sit in the stands as a fan and cheer on the Flashes. But if he ever wants to sit in his old chair on the bench, Bubon said he’ll save it for him. “We’ll miss him next year,” Bubon said. “He has an open invitation to be our assistant coach whenever he wants to be.”

Nightmarish seizures affect six years old boy's life

SIX year-old Ben Holmes doesn't like bedtime. But unlike other kids who just want to stay up to watch telly, Ben has good reason to fret - he knows that going to bed often means he'll suffer life-threatening fits.

Because of a severe form of epilepsy, rarely a day goes by when he doesn't suffer a seizure.
Sometimes he can have as many as 150 a day, with the worst usually happening at night.
Mum Jane said: "Ben associates his bed with feeling rubbish, which means we can have a real hard time getting him to go to bed at night.

"There are nights when he won't go to bed at all or when he does, he will not lie down because he knows something might happen.

"Thankfully though, when Ben does have a seizure he is unconscious throughout, he just knows he wakes up feeling terrible.

"Knowing that has kept me going because seeing your child having a seizure is devastating to watch. At least I know he is not in pain."

Ben, from Edinburgh, was just a week short of his third birthday when he suffered his first seizure.
After a normal pregnancy, he had seemed like a perfectly healthy boy.

Then Jane, 39, who has older sons Jack, 10, and eight-year-old Michael, began to worry he was slow to develop.

She said: "He slept a lot and he didn't crawl for quite a while. He was also 27 months before he walked.

"But my other two boys were not the speediest developers and, as my mum kept reminding me, it took me along time to walk, too.

"So I just thought I must have passed on my own late-developing gene.

"Ben had glue ear so I also thought that might be affecting his balance .

"But then he started doing odd things, such as holding my hand and banging his forehead off it.
"I started to worry and took him to aneurologist who said it was probably a behaviour mannerism because of his developmental delay.

"He was put on a waiting list for an MRI scan, but it was while waiting for the scan that he had his first fit."

It was the summer of 2004 and Jane and her solicitor husband Malcolm had taken Ben and his brothers to a cottage in the Highlands for a holiday.

Ben was sick on the first morning but Jane didn't think there was much to worry about because he was able to eat his breakfast afterwards. However, during his nap that morning he had his first seizure.

Jane said: "It couldn't have been much worse. The cottage was in quite a remote area about 50 minutes north of Inverness.

"He had been sick but, like children do, he bounced back, had breakfast and then went back to bed.

"I was on the phone to my sister when I heard a noise. I went into the room and Ben was having a seizure.

"He was jerking and blue. Never having seen anything like it before, I did the whole hysterical mother bit.

"It was petrifying - and I am not generally a hysterical person. The fact we were in the middle of nowhere didn't help.

"My sister, who is a doctor, told me to put the phone down and call an ambulance.

"We could hear the sirens coming for miles and in that situation it was the most comforting of sounds."

Doctors said it was probably just a convulsion and told the family to go back to the cottage and enjoy the rest of their holiday. But Jane's sister suggested that, with Ben's history of late development, they should take the seizure more seriously and return to Edinburgh.

AT home a few nights later, the tot had his second seizure. Jane, said:"We knew something was seriously wrong.

"We had him sleeping next to us in case it happened again and when it did we rushed him to hospital.

"But doctors said that as we had an appointment for the scan the following week, there was nothing to do but wait.

"We knew there was something going on in his brain, we even thought it could be a tumour."

Doctors diagnosed epilepsy and have spent the last three years trying to control Ben's seizures.
But as his type of epilepsy is always evolving, finding the right medication is difficult.

Already, seven different drugs have been tried without success.

And Ben's seizures seem to become worse with age.

Jane said: "Ben can now have as many as seven big Tonic-Clonic seizures a night, when he goes stiff, falls to the ground and jerks. During the day he has absences when he just zones out and can fall to the floor, knocking his head off the ground.

"He also suddenly loses the power of his neck, so his head falls forward and back up again.
"Doctors now think he may have Lennox Gaustaut Syndrome, a severe type of epilepsy which is difficult to control."

When he was first diagnosed with epilepsy Ben would often go for two weeks without any seizures.
Now he has at least one a day and has phases where they are so bad he needs hospitalised.
Jane said: "He is dreadful at the moment. It's such a shame. He loves company and wants to chat but all he can say is mama, dada and hi.

"He is such a remarkable child that despite having seven Tonic-Clonic seizures in a night, he can still get up and go to school. I don't know how he endures it, he is the most resilient little boy.

"He tries hard to enjoy life, he is amazing. We all feel humbled by him. He gets up, get on with it and tries to get as much out of life as he can."

Having a child with severe epilepsy also takes a huge toll on the family.

Parents have to deal with endless sleepless nights and siblings are also traumatised.

Jane said: "It has been difficult and, to be honest, we have been surrviving rather than living.

You try to do your best as you don't want your other kids to suffer.

We try hard to keep life normal for them but sometimes I wake up and think, 'I've never felt so tired'.
But somehow you always make It through - you just have to because there is no choice."

Jane will raise money for chilenwith epilepsy when she runs this summer's Edinburgh Marathon as part of the Muir Maxwell Trust team.

With her Gallery Girls pals, she will raise her entry mooney for the race holding a sale of kby local artists on June 6-8 Bonham Hotel, Ediinburgh.

TO learn about Muir Maxwell Trust, see www.muirmaxwelltrus.com To enter the marathon in their name, call Jo at Event Consultants Scotland on 0131 557 5756 or email Joanna@eventconsultants.com

'He is remarkable. After having seven fits in a night, he'll go to school'

Seizure-alert dog is a life saver!

You've heard about guide dogs for the deaf and the blind, but what about a seizure-alert dog?
The springer-spaniel is a life-saver for a six year old Kingston girl.

Volunteer TV's Kim Bedford shows us how.

Six year old Gracey Estes was born with Cerebral Palsey and epilepsy.

Lori Estes says, "her seizures are not a pleasant thing and each time she has one, she has a risk of having another one that's worse than the one before."

Gracey's mother Lori had to be by her side 24-7.

Estes continues, "for five years, this child was in my bedroom with me and my husband cause we has to keep a watch on her."

But not anymore, Lori found Cha Cha from a rescue group in Kentucky a year ago.

Not only is he Gracey's best friend, he's a trained seizure-alert dog.

"Cha Cha lays at the foot of her bed and he'll alert us by barking or coming and getting us if she's having a seizure, so we can go and take care of her."

Cha Cha can also detect Gracey's seizures before they start.

Estes says, "we can't tell like a dog. They sense it in their smell. They think that it's their smell or their body change in the child."

Cha Cha never leaves Gracey's side, and because of him, she's able to attend Kindergarten here at Kingston Elementary every day.

"For her to be with regular children in a regular classroom and just experience it all just like any other kid, it's just a wonderful thing."

Gracey's attendant, Charlotte Wilson, says having Cha Cha has cut down on her seizures tremendously, she's only had one in school this year, and Cha Cha brought it to her attention.
Wilson says, "we were sitting and he got up and he came to me and went to her and I was able to take her out of the gym, pick her up, comfort her."

Besides catching her seizures, Cha Cha has helped Gracey come out of her shell.

Estes says, "she's more comfortable. She's more social. I think it's a sense of, it calms her down."
Gracey's teacher, Miss Beth, tells us Cha Cha is never a distraction in class.

She says the students know he's there to work when he has his back-pack on.

New diet to control seizures seems to really work: High fat, low carbs

Without hesitation, Cathy Holt can tell you how long it has been since Noah's latest seizure.
The Lafayette mother keeps a running total. Her blond, blue-eyed 4-year-old has been seizure-free for 40 weeks.

That is a life-altering change for Noah, who had been averaging a seizure a week since he was 6 months old. The longest one lasted three hours. Many ended in a hospital emergency room.
Noah tried state-of-the-art medications to control his epilepsy, without success.

A low-tech approach transformed the boy's life -- a strict high-fat, low-carbohydrate diet that defies all good-nutrition recommendations.

Known as the ketogenic diet, it has been around since biblical times and has gone in and out of favor.

Instead of fruits and vegetables, Noah's meals often include heavy cream, bacon and butter laced with cinnamon.

Why and how the diet works remains a mystery.

But Children's Hospital Oakland, Kaiser Permanente, the Lucile Packard Children's Hospital at Stanford and other institutions have put scores of epileptic children on the diet, with varying degrees of success.

Experts stress that the diet can have side effects and should be attempted only under strict medical supervision. Most recommend it only for children with uncontrolled epilepsy who have tried several drugs that failed to reduce their seizures.

"We always want to make it clear to families that we don't see this as a more holistic approach to epilepsy care," said Karen Amorde-Spalding, clinical nutrition manager at Children's Hospital Oakland. "It comes with its own set of risks and complications."

The risks include serious constipation, kidney stones, gallstones and pancreatitis.

But for some who have tried nearly everything else with no luck, the diet can have a dramatic effect.
A little more than a mile from the Holts, the Cortessis family shares a similar success story.

Five-year-old Niko used to have as many as 25 seizures a day. Sometimes he would have staring spells. At other times, he would suddenly faint, dropping and hitting his head.

His family tried at least five medications, but none stopped the seizures, and they did not like the side effects.

"He was a zombie," his father, John Cortessis, said. "He retrogressed in his language skills, his social skills."

Now, Niko, who has been on the ketogenic diet for nearly two years, has been seizure-free since April 7, 2006.

His parents have just begun the nerve-wracking process of weaning him off the diet, fearful that the seizures will return. Health experts prefer that children not remain on the diet for much longer than two years.

For many children, the seizures will have halted permanently. For others, the seizures return, and experts will continue searching for ways to help them.

The experience has bonded the two Lafayette couples -- Cathy and Bryan Holt and John and Kirstin Cortessis, who were once strangers. They now understand one another in a way few others can.

"Kirstin has become one of my dearest, closest friends," Cathy Holt said.

Niko and Noah are being treated at Children's Hospital Oakland.

The ketogenic diet essentially puts children in a starvation mode.

Normally, the body burns carbohydrates for energy. Without carbohydrates, it starts burning fat.
The liver then produces ketone bodies, which circulate through the body, including the brain, and become concentrated in the blood, said Amorde-Spalding of Children's Hospital Oakland.

The children are placed on a strict diet with about 90 percent of their total calories coming from fat.
Their urine is tested regularly to ensure that it is concentrated with ketone bodies, indicating they remain in a fat-burning stage.

The Bible mentions people fasting to end their fits, which are believed to have been epileptic seizures.

The current ketogenic diet was developed in the 1920s to treat epilepsy but began going out of favor in the 1940s as anti-epileptic drugs became available.

The diet catapulted back into popularity in 1994 when a movie executive who had a child with uncontrolled epilepsy took him to Johns Hopkins medical center. There, a ketogenic diet halted his seizures.

His father promoted the treatment and produced a 1997 made-for-television movie starring Meryl Streep, "First Do No Harm."

The regimen bears some similarities to the Atkins diet, which also puts people in a fat-burning state, but the ketogenic diet is much more controlled.

Families must weigh each bit of food and calculate the proper proportion of fat to carbohydrates. Dietitians such as Amorde-Spalding develop plans to ensure that young people receive enough calories to grow properly.

To start the diet, children often spend three days carefully monitored in a hospital as they switch into a fat-burning stage.

The diet seems to work best in young children, said Dr. Dan Birnbaum, head of neurology at Children's Hospital Oakland.

"It's hard to know whether the diet cures the epilepsy or just stops it so the brain can mature and get beyond the problem," he said.

It may be that the diet changes some biochemical pathways, resulting in improvements for some children, said Dr. Joseph Sullivan, director of the pediatric epilepsy center at UC San Francisco.
"As a result, other chemicals are increased that are known to have anti-seizure effects," he said. "But it's not well understood."

Kaiser Permanente started its program 15 years ago. Among 300 Northern California children it put on the diet, about 20 percent have become seizure-free, and 75 percent to 95 percent have had some improvement.

"It doesn't work for everybody, so it is not a panacea," said Dr. Calvin Wheeler, Kaiser subchief of pediatric neurology in southern Alameda County. "It is not a first-line treatment for seizures."

The diet can put families to the test. Both the Holts and Cortessises locked their refrigerators and pantries to keep their sons from eating prohibited foods.

They also had to make sure well-meaning relatives or neighbors did not slip their child a cookie or piece of cake, which could prompt another seizure.

But the families say the diet has been remarkable and the boys have adapted to the restrictions.
Noah "prays for no seizures," Cathy Holt said The Cortessises are slowly increasing the percentage of carbohydrates in Niko's diet, hoping the seizures will not return.
"Once you've been there, you don't want to go back," Niko's father said.

Reach Sandy Kleffman at 925-943-8249 or skleffman@bayareanewsgroup.com.

Seizures: An accident changes a family's life forever!

From the outside looking in, it might seem that parenting a special-needs child would offer a host of heartache and difficulties.

But that's not the whole story, says Pam Moulton of Afton.

"That person brings out the best in you," she says. "It makes you appreciate things more."
Her 15-year-old son, Eddie Holewa, is a quadriplegic. But it wasn't always so.

When Eddie was small, he was an effervescent, agile little boy -- but that was before the accident.
He was 5 then, and still wearing his bicycle helmet when he started playing on a jungle gym. In a freak accident, his helmet somehow caught on the monkey bars, strangling him and cutting off oxygen to his brain.

By the time Kayla Picciano, his now-18-year-old sister, found him, the damage couldn't be undone.
His family has the advantage of around-the-clock care, including time at school, which wards off the emotional and physical exhaustion common to special-needs providers.

To see Eddie is to understand the severity of his disability -- but to see him smile when his mom teases him is to understand there's still somebody alive and well inside his body.

"He's a person," says Elizabeth Scott of Afton, one of his aides. "We can get him to laugh, and he cries at certain movies."

In some ways, he's still the little boy he was at the time of the accident.

"The Lion King" is his favorite movie, and he lights up and giggles when he hears its musical score.
"It's so easy to get wrapped up in your everyday stuff, but having somebody with special needs is like having sunshine in a bottle every day," she says.

A second family has been created out of his many long-term caregivers. Teri Lanciault and Denise Marvin have been with Eddie since the beginning.

"We all care for him, treat him like he's part of our family," says licensed practical nurse Sandra Scott of Greene.

Moulton lived with Eddie at a rehab facility for a year, learning how to take care of him. Now she can do everything his nurse can, she says, and she's usually the first to notice when something's not right with him.

Progress comes in minute increments -- but it does come. In the beginning he had seizures almost constantly and was in and out of the hospital every week.

"He still has seizures, but this is the third winter we haven't had to be in the hospital," Moulton says.
As time rolls on, she finds herself reaching out to others in pain, empathizing easily and giving herself as a sounding board often.

She has changed a lot over the last 10 years and owes much of her growth to the situation with her son.

"He has taught me to be a better person and more associated to people," she says.
Although their life is far from normal, it's hard to envision a world without him.

"Three years ago, he almost passed away," Moulton says. "My heart was broken the very first time when he had the accident. If I didn't think I could ever feel that way again, I got a quick reminder."
She was in the hospital with him then and told him that whenever enough is enough and he feels the need to go, she would be okay.

She cries when she relates that story.

"He had eight or nine surgeries," she says. "But he just gets up every day and has this smile that's like the sun just envelopes you."

Now she's looking to adopt another special-needs child.

What do you do when someone has seizures?

AROUND 40,000 Scots suffer from epilepsy – yet few people appear to know how to help someone who is suffering from a seizure, according to a survey conducted in schools and businesses.

Dave Crozier, an undergraduate student at Strathclyde University, has given presentations about epilepsy – and carried out his survey – at several businesses and schools, including Fife Constabulary and Park Mains High in Erskine, Renfrewshire.His results are from a small sample and his analysis is still in the early stages, but Crozier has found there are still critical misconceptions about epilepsy that could lead to serious mistakes in treating someone having a seizure.

And his findings back up a survey earlier this year of 4,605 university staff and students. It found a third of people would put something in the mouth of someone having a seizure to stop them swallowing their tongue, not realising it could block their airways. And 67 per cent said they would call an ambulance immediately, even though in a majority of cases a person can recover after a two– or three-minute seizure without need for hospital care.The authors of that study, a team from University College London, said it was "extremely worrying" such myths were still so widespread. Crozier has found similar problems in Scotland, despite improvements in education about basic care.

Questions in his survey ranged from "Would you let someone with epilepsy baby-sit your child?" to "Would you want your child or sibling to marry someone with epilepsy?" and "Can people with epilepsy join the police, fire service or armed services?".Many of those surveyed didn't realise that one in 130 Scots live with epilepsy and most also struggled to define the condition.Crozier, a community education student at Strathclyde University and who has epilepsy himself, says: "I liked my high school as a school but felt they had to do a lot more for me.

Most of my experience of epilepsy was outwith school, but a lot of seizures I took in school and I didn't think to tell people because my friends were my support group, not staff."I learned my own ways of coping and it was not by going to staff – I knew what the response would be. The approach was just, 'Oh let's just send him home'. To some I think I was more of an inconvenience."In Crozier's survey, one response to the definition of epilepsy said simply: "Sugar levels low causing seizures."Another pupil said if someone has a seizure: "Remove anything from a person's mouth and hold their tongue to stop them swallowing it or choking."

But another said: "Alert ambulance and stop another person from putting fingers in person's mouth."The answers from about 75 people surveyed by Crozier suggest a wide range of attitudes and myths about epilepsy.Perhaps the most surprising reaction at Crozier's presentations was when he concluded by revealing that he lives with the condition himself.Particularly at schools, he saw jaws drop and heard nervous laughs as they realised how hidden – yet common – the condition can be.

He says: "More first aid training is needed in schools and workplaces. A lot of people move someone having a seizure and if they had medical training, they would know how to handle individual situations."One organisation that has taken up the model of basic instruction on epilepsy care and symptoms is Fife Constabulary, which was named employer of the year by Epilepsy Scotland in 2006.Ross Bennet, a temporary chief inspector with the force, has had nocturnal epilepsy for ten years and helped Crozier conduct his survey with other officers.Bennet says: "In addition to normal first aid training, we tell officers how to recognise seizures and the signs of someone having had a seizure.

"It's definitely paying dividends. There's certainly less of a stigma than there was and epilepsy is more widely discussed by officers."Our officers are more confident now in dealing with situations. They know someone's hearing can be affected when coming out of a seizure – you might hear an officer speaking to you but nothing comes out of your mouth."If we came across someone who had some alcohol and was found on the ground and at first thought is just drunk and incapable, when you speak to the individual you realise early on that it was epilepsy."

Training has made a difference to the treatment people with epilepsy get from Fife Constabulary."Susan Douglas Scott, chief executive of Epilepsy Scotland, says: "Epilepsy is such a common condition, affecting 40,000 Scots. So it's sensible to know how to deal with seizures. Educating the public about first aid keeps people with epilepsy safe."They will be better treated and healthier thanks to proper care during a seizure. Informed people won't put an object into a person's mouth. They will wait five minutes before calling an ambulance."It's not rocket science but there's a real need to train the general public in epilepsy awareness."

EPILEPSY: WHAT TO DOPARTIAL seizures in particular need to be more widely understood, says Eileen McCubbin, a specialist epilepsy nurse at Ayrshire Central Hospital in Irvine.She says basic knowledge of how to treat someone with epilepsy is very important. There are so many different ways a seizure can manifest itself, and people can make a big difference by knowing the signs.One of the big misconceptions is that people will swallow their tongues if having a seizure
– and mistakes from people trying to help has resulted in broken teeth and bitten fingers.

"Sometimes putting them in the recovery position can be worse," she says. If someone is having a tonic-clonic seizure it's best not to move them unless they are in danger. Instead, cushion their head and wait until convulsions pass, then put them in the recovery position."We have partial seizures which can just look like tucking at clothes, swallowing repeatedly, wandering aimlessly or in circles," she adds. "A person is still in danger at that time. Keep talking to the person because that can sometimes help bring them around quicker."

McCubbin says well-meaning members of the public frequently call an ambulance when it isn't necessary for someone having a seizure.But she says: "Any seizure lasting longer than five minutes is definitely too long and you should call an ambulance."