Intractable Seizures: Arianna Bick's Battle, Told by Her Mother Juli
Update on Arianna | May 2007
In September 2004, Arianna became a big sister with the birth of our son, Sam. In the more than two years since Sam was born, he's brought more joy to Arianna's life than my husband and I ever imagined. For years, we weren't sure how well Arianna could see. Because her muscles are floppy, her eye muscles are also weak, so for quite a long time, she seldom tracked objects with her eyes. But one day, Sam was running around our living room, occasionally jumping on furniture, while Arianna was laying on the floor. All of a sudden, my husband and I noticed her following him around the room with her eyes. She now tracks him wherever he goes. (Probably making sure he's not going to jump on her. You see, one of his favorite games is "tackle sissy.")
Pop-Tarts" Cure
One Saturday afternoon, Arianna was in pain and crying. I wasn't sure what was wrong. While I was looking her over, Sam became really worried and ran into the kitchen. When he came back, he had a box of blueberry Kellogg's" Pop-Tarts" in his hand. He knelt down on the floor next to Ari and said, "Here you go, sissy." He thought she was crying because she was hungry.
Another New Diagnosis
In November 2004, Arianna starting becoming more and more uncomfortable. She was continuously arching her back and grimacing as if she ate something extremely sour. I knew something was wrong.
I immediately contacted Ajay Kaul, MD, Arianna's gastroenterologist at Cincinnati Children's, and told him what was going on. His initial examination didn't indicate a gastrointestinal-related problem, but because he trusted my instincts, Dr. Kaul ordered a gastrointestinal endoscopy. (A gastrointestinal endoscopy is a diagnostic test designed to look at the lining of the gastrointestinal tract using a small, thin instrument called an endoscope.) Initially the scope looked normal but the tissue biopsies later revealed that Arianna had developed a condition called eosinophilic esophagitis.
Eosinophilic esophagitis occurs when eosinophils, a type of white blood cell, are found in above-normal amounts in the esophagus. When the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage. Dr. Kaul started Arianna on Flovent, and her symptoms immediately began to improve. Later scopes have shown continued improvement in her white cell count.
A Christmas to Remember
Sammy really loves his big sister and enjoys helping out with her care, when possible. He watches everything we do so that he can learn how to care for Arianna too.
December 2006 was the first Christmas where Sam started to really understand about the holiday and of course, presents! Since he was so excited, I asked him to help sissy open some of her presents too. Well, he went one step further. He not only helped open the packages, he also gently grabbed hold of her right arm and showed her how to work the various toys she received. It was so sweet, I started to cry.
Continued Progress
Today at age 8, Arianna still functions at the developmental level of young infant; however, she continues to amaze us each day with new surprises. Just recently she started showing preference for books she'd like read to her by pointing. She also enjoys listening to music, mainly the Wiggles. She especially enjoys all the time and attention she now gets from her little brother. She especially beams with joy (and often breaks out into laughter) when Sammy tries to teach her how to wrestle.
"Her Spirit Is Unfailing"
At age 5 weeks, Arianna Bick had her first grand mal seizure. At age 5 months, she was diagnosed with a rare, catastrophic form of epilepsy called infantile spasms. She's been on multiple antiseizure medications, but thanks to the ketogenic diet, her seizures have been dramatically reduced. Today, Arianna is able to take steps in a gait trainer, and she enjoys kindergarten.
A Life-Changing Moment
Arianna was born a seemingly healthy little girl. My husband, Greg, and I never dreamed that in just a little over a month, our lives would change forever.
On June 21, 1999, I was in our living room, cuddling a sleeping Arianna in my arms. All of a sudden, Arianna woke up, her eyes wide and glassy and her body twitching violently from head to toe. The twitching lasted well over a minute, and with every passing second, my heart sank further and further.
Greg and I were told after Arianna was born that some newborn twitching was normal, but I knew there was something very wrong with my baby. Less than 24 hours later, Arianna's pediatrician confirmed what I suspected: Arianna was having grand mal seizures. (Grand mal, or tonic-clonic seizures, involve stiffening of all extremities followed by rhythmic jerking of all extremities). The pediatrician told me to take Arianna immediately to the Emergency Department at Cincinnati Children's Hospital Medical Center.
At Cincinnati Children's, Arianna was put through a number of tests – CT scan, MRI, EEG, spinal tap and numerous blood tests. Every physician and staff member caring for Arianna clearly explained each test and ensured that I was comfortable with everything they were doing before proceeding.
All of the tests came back normal, except the EEG, which showed a lot of abnormal activity. Right away, the Neurology team started Arianna on phenobarbital, an antiepileptic medication. And for the next three months, Arianna was seizure-free and developing relatively normally. By age 4 months, she was holding her head up, smiling, laughing, holding a bottle and rolling over. Unfortunately, our battle with seizures was far from over, and Cincinnati Children's soon became our home away from home.
A Passionate Promise: I'll Never Give Up ...
In September 1999, at 4 months, Arianna started having petit mal, or absent, seizures. (Absence seizures, or petit mal seizures, are frequent, brief events where a child will stop their current activity and just stare, as though daydreaming.)
For the next month, we were in and out of Cincinnati Children's, trying different antiepileptic medications to try to stop this new seizure activity. One medication after another failed. At one point, the oxygen level in Arianna's blood dropped so low with each seizure that she was moved to the Intensive Care Unit (ICU) where she could be closely monitored.
David Franz, MD, Arianna's pediatric neurologist at Cincinnati Children's, stopped by our room in the ICU to check on us. Feeling helpless and distressed, I told Dr. Franz that no matter what happened, no matter how bad things might get, I needed to know that he would never give up on Arianna.
Dr. Franz put one hand over mine, looked me straight in the eyes and said, "Mrs. Bick, I promise you. No matter what happens, I will never give up on Arianna." To this day, nearly five years later, Dr. Franz -- and the rest of the staff at Cincinnati Children's -- continues to keep that promise.
Infantile Spasms / West Syndrome: A Frightening Diagnosis
At age 5 months, Arianna developed a rare and catastrophic form of epilepsy called infantile spasms, or West Syndrome, which can rob children of their development. Literally overnight, Arianna lost the ability to hold her head up. She stopped rolling over, stopped smiling and laughing, and stopped feeding by mouth.
It was a frightening and devastating diagnosis. All I could do initially was sob. Adjusting to feeding her by feeding tube was especially hard. Feeding had been one of my favorite times with Arianna.
Noticing how overwhelmed my husband and I were by the news, one of our regular nurses, Karen Tucker, went home and researched infantile spasms for us on her own time. The next day, she brought us everything she'd been able to find. It filled my heart with warmth that Karen would go to so much trouble just for us, and we've had a special bond with her ever since.
A Hospital Baptism
Arianna was scheduled to be baptized in October 1999; however, she was admitted into Cincinnati Children's the same week. Faced with having to cancel the baptism, the nurses on the neuroscience floor banded together and turned the nurses' lounge into a chapel. (Arianna wasn't stable enough at the time for us to leave the floor and use the hospital chapel.)
With the nurses hard at work preparing the lounge, my husband and I frantically called our friends and family to tell them of the change in plans. While it wasn't the baptism we had planned for our baby girl, it was just as special and lovely as any church ceremony -- only better because our newfound extended family at Cincinnati Children's also shared in this joyful event.
New Hope With the Ketogenic Diet
In June 2000, we decided to start Arianna on the ketogenic diet for her seizures, which by now numbered more than 50 a day. The ketogenic diet is a special diet that's high in fat and oils and low in carbohydrates. We were admitted into Cincinnati Children's for the first three days of the diet, while we were taught what to do and how to monitor Ari's blood glucose level at home.
Within a few months, Arianna's seizures had dropped by half. After seven months on the diet, she was down to having 10 seizures a day. Then, a little more than a year later, we were seeing only one to five seizures a day.
The staff at Cincinnati Children's closely monitors Arianna to ensure she doesn't develop any complications as a result of the diet. Her height and weight are checked monthly, she has regular blood work done, and each year Arianna has an EKG and echocardiogram to check her heart function.
My Child's First Steps
One day, in March 2003, I took Arianna for her biweekly physical therapy session at Cincinnati Children's Outpatient Harrison. Arianna was in an especially good mood that day.
Midway into the session, Arianna's therapist, Beth Roell, looked at me and said, "You know, since Arianna's so alert and happy today, I'd like to try something." She put Arianna in a gait trainer, a pediatric walker, and Arianna took her first steps. It was such a wonderful sight, I could barely keep from crying.
With her low muscle tone, Ari's steps weren't "quality" steps, as she would sometimes bend her feet to the side. However, Beth was encouraged by the fact that Arianna automatically knew to alternate her feet. For a child who had never before walked, this was a very good sign.
Cincinnati Children's: Changing the Outcome
Today, at age 5, Arianna functions at the developmental level of a 2- to 4-month-old. But thanks to the experts and dedicated staff at Cincinnati Children's, Arianna continues to take steps in her gait trainer, and she is slowly building up some strength in her muscles. She can once again hold her head up when lying on her tummy. She also enjoys school and loves being around other children.
Arianna still gets fed through a gastronomy tube (G-tube), but she is able to eat some foods by mouth and she drinks sugar-free Kool-Aid" from a sippy cup. Most important, Arianna's wonderful and contagious laugh has returned, and her smiles can brighten any room. Her spirit is simply unfailing.
Cincinnati Children's has changed the outcome for me too. After all of the care and compassion Arianna and our family have received at Cincinnati Children's, I felt this is where I belonged, so I applied for a job.
I now work as a web associate in the Marketing and Communications Department and love every minute of it. At the end of each day, I'm left with a tremendous sense of accomplishment that I've done something valuable to help other families like ours.
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