Charlie Claire

After struggling to get pregnant, Kristin and Jason were delighted to learn that they were expecting twins. Even though she was carrying a double burden of babies, Kristin sailed through her pregnancy and delivered a healthy boy, Jackson, and a healthy girl, Charlie Claire, just two weeks prior to their due date. The North family rejoiced at the addition of their two blond, cherubic babies.

The first two days of the twins’ lives went exactly as planned. Both Jackson and Charlie fed well and seemed to be adjusting to newborn life. But on the evening of her second day of life, when Charlie Claire’s father was feeding her a bottle, he wondered if her color appeared a little “off.” It was hard to tell in the dimly lit hospital room, but Jason wondered if his new daughter was the color of ominous thunder clouds instead of the expected baby pink. Before Jason and Kristin could think more, the episode was over.

The following morning, however, Charlie had another brief spell where her appearance altered. This time, Charlie was taken quickly to the nursery and was found to have low oxygen levels. Even though Jason had already left the hospital to get things ready for the twins’ expected discharge, a nurse quickly informed Kristin that her new baby had “bought herself a 48-hour stay” in the Neonatal Intensive Care Unit (NICU).

Throughout the day, Charlie Claire had many similar dusky spells. The NICU provider on duty noted that Charlie’s eyes repeatedly drifted toward the right with each spell. Eventually, Charlie’s parents heard a diagnosis that they never expected but that would become alarmingly familiar as time progressed. After monitoring Charlie for the entire day, the NICU provider ventured, “I think she’s having seizures.”

Shortly after this revelation, an EEG confirmed the presence of seizures. A subsequent MRI revealed a malformed region of Charlie’s brain. Charlie was started on the anti-epileptic medication phenobarbital and the spells stopped almost immediately. After over a week in the hospital and careful adjustment of phenobarbital to acceptable levels, Charlie Claire was sent home to join her healthy twin brother.

Things went smoothly initially after Charlie’s hospital stay and seizures began to feel like a distant memory. But when she was two months old, Charlie’s parents noted that she had brief episodes of unusual movements that seemed like muscle spasms. Charlie’s mother recorded the events and showed the video to her neurologist at a routine visit. Unconvinced the episodes were seizures, he arranged for another EEG.

Kristin vividly remembers the day that she took Charlie for her first outpatient EEG. As she sat quietly in the waiting room, she tried not to worry when the EEG technician rushed out of the room and explained that she was going to get the neurologist. Within moments of the doctor’s arrival, the EEG technician again poked her head out of the room and spoke with urgency to Kristin, “The doctor wants to talk to you.”

Charlie’s EEG revealed that she was having almost continuous seizures. She was admitted to the intensive care unit immediately and was started on a series of different antiepileptic medications. Charlie was treated with Keppra, Dilantin, Tegretol, and her phenobarbital levels were increased. Still, she continued to have seizures. Finally, one of her neurologists conceded, “we’ve done everything that we can do. Charlie will need to have brain surgery for treatment of her seizures.”

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One month later, Charlie’s seizures were characterized as infantile spasms (IS). Her diagnosis of the developmentally detrimental IS placed increased urgency on the proposed brain surgery. Still, her doctors warned that surgery was too high-risk until Charlie was six months old. Holding their struggling two-month-old in their steady arms, Kristin and Jason prepared for a long wait.

Months later, Kristin and Jason remember the staff at Virginia Commonwealth University hospital (VCU) as being welcoming, gracious in their explanations, and hopeful while speaking about Charlie’s future instead of focusing on the challenges of today. Charlie had surgery to resect the malformed area of her brain in her right temporal-parietal-occipital lobe in March 2011. Immediately after her surgery, Charlie’s infantile spasms disappeared.

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 But on Mother’s Day 2011, Charlie’s parents noted that she started having another type of event where she would briefly look to the right, flutter her eyelids, giggle, and then return to her normal demeanor 30 – 45 seconds later. This time, Charlie was diagnosed with the more benign simple partial seizures and started treatment with Lamictal. A repeat MRI and EEG confirmed the remaining presence of a malformed portion of her occipital lobe. Charlie had a second resective surgery in the fall of 2011 to remove the remnant of irregular brain tissue. Unfortunately, her second surgery did little to change the nature of her partial seizures.

     

Charlie will be 4 years old in October. Her parents report that by all accounts, she is a normal, active, and happy little girl. Like most young girls, she has memorized all the words and characters in the movie Frozen. She also fosters a fierce bossy streak that lends a charming “sassiness” to her demeanor. Her parents were filled with pride when they took their twins to a birthday party and another parent expressed disbelief upon hearing Charlie’s history of two brain surgeries and epilepsy. “I would never know!” the other parent effused. “She doesn’t look any different than any of the other children!”

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But despite outward appearances, Charlie still has her share of challenges to face as she grows. She works with a physical therapist, occupational therapist, and speech therapist five days a week to help her maintain and acquire new skills. Her depth perception and vision is affected by the visual field defect acquired through epilepsy surgery.

Charlie’s parents report that her positive outcome has been directly affected by her twin brother, who has been Charlie’s greatest teacher. “All along the way, Jackson has been present to challenge Charlie,” Kristin reports. “Anything that he is doing, she wants to be doing.” Jackson doesn’t remember the periods of time when Charlie was critically ill in the intensive care units, but he was fascinated by the hat of wires she wore during her recent inpatient stay for a continuous EEG.

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While raising twins always has it’s challenges, Kristin states that her experiences with Charlie Claire have taught her a lot of things about parenting.  “I’ve learned to always trust your instincts about your own child,” she said. “When Charlie started having her seizures, I thought that something was wrong and there was.

“I have also learned how to consistently go to bat for our daughter. I’m determined that Charlie will never fail due to lack of effort on our part.

“Charlie has also taught me not to get ahead of myself. Often I have worried about things such as what if she doesn’t pass the next test, what if she doesn’t do well in kindergarten. . . I have been forced to learn to enjoy Charlie today and every day.”

Kristin’s voice is hopeful as she summarizes her family’s journey with Charlie Claire so far. “We didn’t know what to expect. Everyone said, ‘we don’t have a crystal ball,’ now people at birthday party have no idea what she’s been through. We could have only dreamed that we’d make it this far.”

You can learn more about Charlie Claire’s journey on Kristin’s blog: http://www.charlieclaire.com

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Carrie and the Gift of Perspective

If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.

“When I tell people I have epilepsy, it feels like they are seeing another side of me.”

But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.

Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness.  Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation.  After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.”   Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.

Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes.  Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed.  Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.

“After that point and until this day” Carrie said, “I never compromise on sleep.  When my daughter was born, my husband did all the night time feedings.  If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”

“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”

When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures.  Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just  3 – 5 each year.  Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom.  In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.

“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases.  When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine.  My epilepsy could be a lot worse.  It’s not like I’m dealing with cancer.  I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”

Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah.  Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect.  Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill.  With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.

Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else.  When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am.  I’m not going to let this stop me from doing what I want to do.”

When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for.  The ability to own a disease that has potential to overtake us is invaluable.  Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.

Again I remembered that the more we talk, the more we understand.

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