Patient Experience

In July, 2002 Adam was born, at the end of a completely uneventful, well cared for pregnancy. His sister, Lucy is just 15 months older than Adam. At birth he appeared healthy, but soon we saw difficulty feeding. After multiple trips to the pediatrician we were told that he had hydrocephalus.

Two weeks after a shunt was placed in a hospital close to home in New Jersey, Adam developed seizures. At only 12 weeks of age, he was having upwards of 10 seizures an hour. We were given medicines that were not working and very little hope for the future. I remember looking into Adam's eyes one night in the hospital and his newborn eyes "willed" me to find more expert help. Through some quick research we discovered the team at Cleveland Clinic to be one of the most recognized for his problem. We did not know anyone in Cleveland, nor had we ever been there, but we took Adam to be evaluated there.

At Cleveland Clinic we were treated with the seriousness Adam's problem required and our hope was restored. Shortly into the evaluation, we were told that the doctors were hopeful that Adam would "walk, run and play and that he would be a wonderful member of our family". Although directly contradictory to what we were told by our local team, these words became tattooed in my brain. Four years later, they have turned out to be very true. Adam underwent a modified functional right hemispherectomy at 15 weeks old, and he was one of the youngest children to undergo that procedure at that time. We then learned Adam had suffered a massive stroke in utero.

Though the road to today has not been a straight one, Adam is doing beautifully. With a very intensive therapy schedule, Adam has learned to walk, feed himself, drink from a cup independently and speak in two and three word phrases. Adam is now attending preschool and is participating in many additional private therapies. Most importantly, Adam is a very happy, curious, funny child with a truly magnetic personality. I am so grateful to the team of physicians and staff for their expertise and compassionate care at each turn, and I recognize the tremendous impact the members of the Pediatric Epilepsy Support Group have in helping parents make the right decision for their child. Hopefully, I can be supportive to another family going through a time of extremely difficult decisions and uncertainty.

Jill, Adam's mother

My son, Brian, was diagnosed with Rasmussen's Encephalitis at age 3½. Soon after the onset of his seizures, having failed multiple anticonvulsants in a short period of time, we were counting hundreds of seizures every day.

After extensive diagnostic testing under the direction of Cleveland Clinic's Pediatric Epilepsy team, we were faced with a recommendation for brain surgery. A right functional hemispherectomy was performed by a Cleveland Clinic epilepsy neurosurgeon and his team. Following surgery, Brian was seizure free for five months. At that point we began to notice subtle seizure activity. After video EEG monitoring confirmed that Brian was once again experiencing seizures, a complete right anatomical hemispherectomy was recommended and performed. Following the second surgery Brian's body had difficulty regulating the pressure from cerebral spinal fluid, so an intracranial/abdominal shunt needed to be placed.

Having to go through a second hemispherectomy was difficult, but wound up being the answer to our prayers. Brian has been seizure free and off all medication for five years.

Having worked extensively with the occupational and physical therapy departments at Cleveland Clinic, Brian is now a happy, healthy 9 year old. You can see the joy in his face as he talks about school and his extracurricular activities, which include choir, golf, swimming and Tae Kwon Do martial arts.

Being able to share Brian's experience through Cleveland Clinic's Pediatric Epilepsy Support Group has helped me, as well as the families I come in contact with. Knowing that I am not the only parent who has had to cope with a child's major medical crisis, and make the kind of life-altering decisions that ensue, is a comfort. Our family, as well as thousands of others, has found Cleveland Clinic to be one of the best hospitals in the world for care of children with epilepsy and epilepsy related disorders.

Sincerely,
Nancy and Brian Geschke

As most parents can attest, the day your child is born changes your life forever. This could not have been more accurate when on May 23, 1999 our first born, Brooks Matthew entered the world. Five months after the emergency C-section followed by 7 days of NICU we saw a neurologist because Brooks wasn’t using his hands equally. We were then told that he had suffered a stroke at, or during, birth and had cerebral palsy. Shock doesn’t quite explain our initial response. Obviously our world changed forever. MRI confirmed Brooks' massive stroke and two weeks later he had his first seizure. Treatment followed and we had 3 years of seizure freedom, but with it came many difficulties as well as conflicting opinions on management.

Fast forward to May, 2004: Brooks’ seizures became out of control. We decided to home school him as his behavior was increasingly difficult, and he was unable to work within a classroom setting. At that time, we were in the process of changing his medications again, and our world seemed out of control. After lots of discussion we were told that Brooks was a candidate for epilepsy surgery. We first interviewed several top west coast medical centers. Then we were referred to Cleveland Clinic. After we met Cleveland Clinic’s epilepsy and neurosurgery team, we knew that surgery was the right decision for Brooks and that this was the right place to do it. I remember meeting the neurosurgeon, and getting teary eyed, not because of what he was saying, but rather because I immediately felt comfortable with him, his confidence and expertise. That has been the sentiment we hold for each and every team member that has worked with Brooks at Cleveland Clinic.

On January 13th, 2005 Brooks had a functional hemispherectomy. At that time he was on three anticonvulsants and still breaking through. Two years later he is seizure free and on a very low dose of Depakote. For Brooks it was like a light bulb went on and he was finally able to work as efficiently as his brain would allow with the damage he had suffered. He is a different, happy child, and our little hero. We are grateful for every single seizure free day and don’t take any of these days for granted.

We strongly support the Pediatric Epilepsy Support Group. To take a family member and even consider epilepsy surgery let alone do it, is such a daunting decision. Few can truly provide support and be lifesavers like those who walked in these shoes. Our experience before, during and after surgery was wonderful. We have found true friends, and know that Brooks’ life was forever changed.

Brooks’ parents

Colleen is a very sweet and beautiful little girl. She was born with a brain malformation which caused her to have hundreds of seizures every day. We tried, and soon failed, many anti-epileptic medications. Shortly thereafter Colleen developed yet another seizure type, requiring steroid shots. We knew we couldn't keep playing "chase" with these drugs.

At 2-1/2 months of age, we took her to Cleveland Clinic. After extensive monitoring, numerous tests and scans, we finally had answers. Her epileptologist, along with the pediatric epilepsy team, reviewed every film, scan, x-ray and lab with us. Before their team of physicians could meet to determine a treatment strategy, Colleen went into status epilepticus, so her situation became life threatening.

We were in a local hospital when we received the phone call: "surgery is the best option for Colleen." I cried my eyes out. "What should I do? How can I decide to send my 3 month old to brain surgery?" Without it, Colleen would have died…why was it so hard for me to decide?

The functional hemispherectomy at 3 ½ months old saved our daughter's life. The longest 8 ½ hours of my life were well worth it. She continued to have seizures, but they weren't as many or as severe.

Seizures became worse, despite 3-4 medications, and anatomic hemispherectomy followed when she was 10 months old. That surgery gave our daughter to us.

We heard her cry, babble words, and focus on things for the first time! She seemed so aware of her surroundings! We weaned her from all but one of the medications. With each wean, we saw tremendous improvements. Although we are still struggling with some "seizures vs. episodes", she is so much better!

The pediatric epilepsy and neurosurgery staff at Cleveland Clinic was just as concerned for our daughter's health as we were. They always allowed us the opportunity to voice our concerns and inputs on treatment for Colleen and they talked in language we could understand, which is very important to me. They are such wonderful people!

Even though we had the support of our family and friends, none of them could understand where we were at that point. We have experienced heartache, tears, and confusion and felt the emotional and stressful toll it plays on one's family. Through the Cleveland Clinic Pediatric Epilepsy Support Group, we hope we can be of help to another family.

Sincerely,
Julie Bertel

The treatment – removal of part of the brain – sounds drastic. But it has left 5-year-old Elizabeth Szasz free of incapacitating seizures and her parents, Steve and Sara, counting their blessings. "The fact that we haven't had a squad run in over a year is great," said Elizabeth's mother, Sara, 34.

On Jan. 30, Elizabeth will be the host child for the annual Stroll for Epilepsy fundraiser at Polaris Fashion Place to benefit the Epilepsy Foundation of Central Ohio. The Szasz family of southern Delaware County will be strolling with their three children and a sense of cautious optimism. Elizabeth was almost a year old when her seizures began. At first, medication controlled them; then they intensified. On a log, her mother recorded hundreds of them, lasting anywhere from a few seconds to several minutes. "She didn't fall to the floor and shake. She would kind of blank out. She would get very red and sweaty." Seizures exceeding five minutes required a trip to Children's Hospital. The Genoa Township emergency squad made at least two dozen such runs, Mrs. Szasz said. Elizabeth's development was delayed, and her family's lives were constantly interrupted. Neighbors and relatives (Mr. Szasz's parents live a few minutes away) arrived at all hours to help when Elizabeth had to go to the hospital. The family went from knowing nothing about epilepsy (which covers a variety of seizure disorders) to being intimately familiar with it.

Elizabeth's breakthrough came in October 2008, when she went to the Cleveland Clinic for tests. She happened to be connected to an electro-encephalogram when she had the worst seizure of her life. When it hadn't abated after 1 hour and 17 minutes, doctors put her in a drug-induced coma. "They said, 'We don't have any choice,' " Mrs. Szasz recalled. "'Her brain can't take any more.'" Fortunately, the seizure also gave doctors a good look at where the seizure originated – the left temporal lobe of her brain. They recommended that about two-thirds of it be removed. "No one ever wants to hear your child needs brain surgery," said Mr. Szasz, 35. "But if that was a chance to correct it, we were 100 percent for it." In some children, such surgery isn't possible because the seizures originate in areas of the brain that can't be removed. "If it had been a little more posterior, about 2 centimeters, we wouldn't have been able to do anything surgically," said Dr. William Bingaman, the surgeon.

Although her parents are hesitant to declare her forever free of seizures, Elizabeth has improved dramatically since then. She is receiving therapy to overcome developmental delays and prepare her for kindergarten. Since the surgery, she has shown an aversion to noise and bright lights. Otherwise, her personality hasn't changed: She's still stubborn, said her forgiving mom. "You know what? It serves her well. She might have needed that to get through all she's gone through."

- Joe Blundo (Joe Blundo is a Dispatch columnist)

As a pediatrician, Cara Daniel encounters sick kids every day.

Which is probably why it didn't take her long to realize something wasn't quite right with her newborn son, Emory.

"I noticed it even before he was discharged from the hospital," said Daniel, whose husband, Aaron, is also a physician. "At first I thought it was just typical newborn jerkiness, but we very quickly realized he was having seizures."

At a week old, Emory was having a dozen or more of the seizures a day. His extremities would twitch rhythmically for several seconds, and his eyes would move to one side. Visits to the emergency room and a pediatric neurologist, along with a battery of medical tests, revealed that Emory had a malformation on the left side of his brain that was causing the seizures.

That's when the Daniels, of South Lyon, Michigan, were referred to Cleveland Clinic’s Epilepsy Center and neurosurgeon William Bingaman, MD. Dr. Bingaman is considered one of the nation's foremost experts on epilepsy and is Head of Cleveland Clinic's Section of Epilepsy Surgery. Dr. Bingaman and his team of neurosurgeons have performed more than 3,700 adult and pediatric epilepsy surgeries.

"Our local neurologist recommended Cleveland Clinic right from the beginning," says Cara Daniel. "He had other patients doing very well who had been treated there, and it was clearly one of the Centers of Excellence. Dr. Bingaman's name is all over the medical literature for this disorder."

Dr. Bingaman performed a surgical procedure in which he removed the section of Emory's brain containing the malformation. After 10 days in the hospital, 5½-month-old Emory went home. He had a few more seizures following the surgery, but the seizures ended about four weeks postoperatively and have not returned.

Today at age 2½, Emory is developing well following a year of physical therapy and ongoing occupational and speech therapy. One side effect of the brain malformation is permanent peripheral blindness, and he may also have some degree of long-term cognitive impairment.

"But when my friends who have kids Emory's age get together, they'll often say they wouldn't know anything like this had ever happened to him if we hadn't told them," says Cara Daniel, who is also mom to 4-year-old Taylor and 3-month-old Graham. "I just wanted him to be able to live a happy life, and he absolutely will do that and so much more now."

Katy was diagnosed with cortical dysplasia at 13 months of age. We were told that seizures were common with this disorder, but nothing else was ever done. At 18 months, she had her first (grand mal) seizure. At that moment, the life we knew would be changed forever.

Our first medication was Tegretol. We thought it worked as we saw no seizures, but every time we had an EEG the dose was increased. After two tumbles down the steps and some stitches, our pediatrician confirmed that we were facing a neurological problem. Our hearts were ripped out again.

After many, many, many failed medications, in May 2000 we tried Vagus Nerve Stimulation (VNS), with little help. Our neurologist referred us to Cleveland Clinic to be tested for surgery. We reluctantly agreed, but had nothing else to try. Katy was then 8 years old, and having over 150 seizures a day.

We left Cleveland, after a week of testing, with mixed results. The doctors were not very optimistic on surgery. Only treatment would be the Ketogenic Diet. All that was left was to wait and see if she was eligible for surgery. After a few agonizing weeks and several phone calls, we received recommendation for right functional hemispherectomy.

Katy's surgery was on November 7, 2002 at Cleveland Clinic. After a few weeks in the hospital (seizure free!), she was home by Christmas.

4 years later, Katy remains seizure free. We weaned off 3 of the 4 medications, reduced the dose by 50% on the last remaining anticonvulsant and are now in the process of weaning the rest. The VNS (turned off two years ago) was recently removed. Our trip to Cleveland in November 2006 was bitter-sweet: we received Katy's release from treatment, as she doesn't need ongoing pediatric epilepsy services any more. It's been at times a grueling road to travel but with the support and care received at the Clinic, and with God's control, it has been well worth it: we have our daughter today!

She exceeds all expectations and is truly a miracle that God gave us our daughter back. She is in 3rd grade, a very active little girl, and doing great! She attends school and is being mainstreamed in regular classes. She continues to receive physical, speech and occupational therapies, but we strive to keep life as normal as possible for Katy. It is truly amazing to see her every day with her big smile and being able to complete routine daily activities with no problems.

We traveled down a long, lonely road, often leaving us depressed and asking why. Life was tough, yet every night when we tucked Katy into bed, she knew that she was loved by her mom and dad. Now, she tells us, that she loves us too! We used to go to bed every night completely exhausted. Today, when I lay my head on the pillow and wake up the next day to see that smile, well...it is just worth it! It was hard to let go, but we wouldn't have done it any other way.

Thank you for reading our story. We hope you can find answers to help you in your journey, and the comfort you need to make it through another day.

Katy's mom and dad

Kayla was a typical twelve year old girl with no prior health problems. In February of 2004, she began having seizures and was brought to an area hospital. After four days we left with Kayla still having seizures, on anti-seizure medications, and with no answers. I decided to make an appointment with the pediatric epilepsy team at the Cleveland Clinic as they came highly recommended. I was impressed with the advanced technology and the well trained staff at the Pediatric Epilepsy Monitoring Unit.

Kayla's seizures started very rapidly and progressed fairly quickly. After several different medications and tests, Kayla's seizures did not stop and were becoming more frequent. In less than 3 months, we were faced with a very difficult decision. I remember the day the neurosurgeon entered the room to talk to us. I could not believe this was happening, especially so quickly. The neurosurgeon recommended the removal of the area of the brain where the seizures were originating from. I found out that removing this area of the brain could cause temporary weakness on the opposite side of the body and difficulty with speech. Kayla would probably need physical, occupational, as well as speech therapy.

Even though I knew in my heart this was what she needed, a part of me was scared. I wished I had someone to talk to, who could relate to what I was going through. Through the Cleveland Clinic's Pediatric Epilepsy Support Group, I was given the name of another parent to speak with whose little boy had the same surgery for his seizures. Talking to her made such a difference. She was able to answer so many questions and calm so many fears. The support she provided to me, Kayla, and my family was priceless.

Kayla went through with the surgery, and she woke up able to move and talk. We are so grateful for physicians like her epileptologist and his partners. They not only have great knowledge and expertise, but also show compassion. We are also thankful for the team of nurses and techs in the Pediatric Epilepsy Monitoring Unit. They loved and cared so much for Kayla! These men and women will always hold a special place in our hearts.

The care she received at the Clinic was more than I could have ever asked for. From day one I knew and trusted that she was in the right place being cared for by the right people. Today Kayla is a normal teenage girl living a very normal life. She does continue to have an occasional seizure and still has to take medications, but she is far better than she was.

Kayla's parents

Kiko was born full-term and tipped the scales at 7 lbs. 4oz. Just like any other baby, he developed beautifully and was right on target with his milestones until that dreadful morning of Valentine's Day, 2005 when the sudden, unexplained onset of his seizures befell. He was rushed to the hospital and after 3 days in the Pediatric ICU with series of tests, the nightmarish days of our lives have just dawned.

It was revealed to us that Kiko was born with a congenital brain anomaly known as right hemimegalencephaly. Kiko continued to have multiple seizures each day and they soon took on many different types of symptoms and behaviors. After multiple tests, failed treatments and several medical opinions we were told that Kiko's only intervention left is surgery. That was a very difficult decision. Grasping that this is the only recourse for a better life for Kiko helped us get through that turmoil.

Kiko had functional hemispherectomy 8 days before his 1st birthday. Unfortunately, about 3 weeks later seizures returned with a vengeance, more intense and more frequent. Having put him through surgery and get these results was disconcerting, to say the least.

A second surgery was then deemed necessary. At 18 months, Kiko underwent completion of the initial procedure. We again hoped that this was going to stop Kiko's sufferings but 4 weeks later seizures recurred again. After more surgical opinions we were referred to Cleveland Clinic.

It was difficult to venture hundreds of miles away, to an unfamiliar place. Few days of head-breaking deliberations and very helpful e-mail exchanges with compassionate parents who traveled down similar paths helped us decide to take on the challenge.

At Cleveland Clinic we met the team - caring and brilliant physicians, and their staff. Our epileptologist and the epilepsy neurosurgeon were very thorough in explaining to us what they can possibly do for Kiko and allowed us time to ask all our questions.

In August 2006 Kiko had his 3rd brain surgery, anatomic hemispherectomy. Kiko was out of the ICU in 5 days and discharged in 1 week (prediction was 2-3 weeks). Over 1 year after that daunting day, Kiko remains SEIZURE-FREE!!! At 3 years old, despite left sided weakness he is now walking independently, is stringing words together, sings and continues to express himself in his own truly delightful way.

The Cleveland Clinic's neurology/neurosurgery programs with experienced and compassionate doctors and competent staff helped make this a reality!

Kiko's parents

Mira's story with epilepsy began when she was 9 months old. Mira was living with her biological mother in and out of shelters and on the streets of a city in the western United States. Her extreme malnutrition led to a stroke which left her with severe deficits on her left side. Not long after, she began suffering from seizures which continued for nearly 6½ years. After her adoption, Mira was on many different anti-seizure medications, none of which adequately controlled her seizures. After moving to Cleveland, we took her to Cleveland Clinic for an epilepsy evaluation. The recommendation was surgical removal of the right hemisphere of her brain in order to eliminate the source of the seizures. Mira's mom and I stared at the doctor in surprise. Was he kidding? Take out half her brain! What was this man talking about? The recommendation sounded extreme – to say the least!

He and the epilepsy surgery team did their best to put our fears to rest. Still, we needed more reassurance. Given the phone number of a parent volunteer from the Pediatric Epilepsy Support Group, we talked with her for many hours. She was very patient and answered the endless questions we had about the surgery and what we might expect for Mira afterwards. Nancy was our "knight in shining armor." The time she spent with us was invaluable and to her we will always be grateful.

Mira had her hemispherectomy in March of 2004. Today, she is off all medications and is seizure free. The past three years have been a period of surprising growth in her development and learning. Instead of countless seizures, her brain is now able to do the things a little girl's brain ought to do. Things like learning to read and write, enjoying a game of Chutes & Ladders, and becoming the sweetest little girl in the whole world.

Because of the help and support of the Pediatric Epilepsy Support Group, we decided to return some of that kindness and are now active members ourselves. We know every child's story is different, but families need to know they do not have to go through it alone.

Anne & John
Mira's mom & dad

Rachel Kreidler doesn't mince words when it comes to the surgery she underwent two years ago at Cleveland Clinic to address her debilitating seizures.

"It saved my life," she says. "I cannot tell you how thankful I am to the doctors, nurses and staff at Cleveland Clinic for what they did. They cared about me as a person. For them, it wasn't just a job or just another surgery. I’m also very thankful for the support I received from my family and friends."

In early 2011, Kreidler traveled from her home in Pickerington, Ohio, to Cleveland as a patient of William Bingaman, MD, Head of Cleveland Clinic's Section of Epilepsy Surgery. Dr. Bingaman removed the small section of Kreidler's brain that was causing the seizures, a procedure that he and his team have performed thousands of times for adult and pediatric patients.

The result was a positive one for Kreidler, a busy mother of two. "Praise God, I've been seizure-free since the operation," she says.

Kreidler was diagnosed a decade ago with simple and complex partial seizures. Over time the seizures became more frequent. At their worst, they would come in weekly clusters and even cause her to lose consciousness.

She tried a range of medications with varying and unsatisfying results. Finally, her local neurologist suggested the option of surgery. Kreidler and her husband, Eric, were understandably nervous about the idea, but they prayed about it and did their own research into medical facilities that had experience with the procedure.

"We looked at four major hospitals where I could have had the surgery, and eventually we decided on Cleveland Clinic because of its reputation and the fact that it had such success with this type of surgery," she recalls.

Kreidler underwent a battery of tests to determine whether she was a suitable candidate for the procedure. When it was found that she was indeed eligible for surgery, she came to Cleveland for the operation itself and three days of recovery in the hospital. Her recuperation continued at a steady pace at home, and in time she was able to resume all normal activities – including caring for her daughter Hannah, now 6, and son Jacob, now 4.

"I still take a seizure medication every day, but the seizures themselves have disappeared, which has been a wonderful blessing," she says. "I would absolutely recommend this treatment to anyone whose life has been affected by seizures and who is a candidate for it."

It began at the age of three – a bout with encephalitis, an irritation and swelling in the brain that led to the development of scar tissue on her hippocampus, the body's memory bank – and it was at the age of three that Sarah Brown had her first epileptic seizure.

"I had three in that night, the Clonic Tonic Seizures, which are the Grand Mal Seizures, the big ones affect your whole body and you start convulsing," says Sarah Brown.

"It was so upsetting that I couldn't even call 911. And I rode with her in the EMS and she had another one on the way there and she had one at night there at the hospital," says mother Becky.

This night would leave a lasting impression on Sarah and her family. She wouldn't, however, have another seizure until the age of 12 and as her body began to evolve, so did her epilepsy. It was in college that her epilepsy dominated her life.

"I had so many seizures. I was seizing three or four times a week," says Sarah.

These weren't your typical seizures. Caused by fatigue, Sarah could have them sitting in class or even walking. To the outsider, it appeared as though she was just staring off into space.

"It was a danger though, if I was walking to class or you know just out in the streets and just randomly have one, because no one could help me."

Dr. Stephen Hantus at Cleveland Clinic took a keen interest in Sarah's case. It was his enthusiasm and expertise that allowed him and a team of doctors to remove part of Sarah's right temporal lobe. It was a move that completely changed her life.

"She was having big trouble in school because she wasn't able to concentrate as she was on five different anti-seizure medications. However, after we did the surgery, we were able to taper her medication and what she told me was her artistic talent bloomed," says Dr. Hantus.

Sarah has been taking her experiences and putting them to use through art. "The Seizure" is one item in particular that Sarah is donating to the Epilepsy Foundation of Indiana. One of the themes that you notice is the checkerboard theme. You see that it's in two different places; Sarah says that's because someone with epilepsy is playing a game. It's like losing a battle against epilepsy, but since her surgery Sarah says the checkerboard is together and she's now winning the game.

Sarah says, “I want them to know that when they look at my art, especially this piece, that they aren't alone."

Nearly two-million Americans suffer from the effects of epilepsy and few can describe how they feel. By shedding light on her battle with epilepsy, Sarah hopes to provide the guiding light that she follows for others like her.

"I sent it to my doctors and then they had it shown to their colleagues. They said that I described what they see in their patients everyday. I have several friends who've looked at it and they say this feels like my aura or that feels like my seizure. That's amazing because I want them to know that," says Sarah.

• View the full epilepsy patient story and video by the Indiana News Center