My daughter’s journey from seizures to surgery

By Celeste P., mom of CHOC Children’s patient Camila

When my daughter Camila was going through epilepsy surgery, I read stories about other kids’ success, and gleaned hope from them. As much as I learned from her doctors and nurses, it was helpful to read a parent’s perspective. I now share our journey in the hopes that it will be a source of comfort to other parents.

A mother’s instinct

During my pregnancy, an ultrasound showed that my baby had heart abnormalities. Camila underwent an MRI after she was born, and the imaging confirmed she had tuberous sclerosis complex (TSC) — a disorder that causes growths in multiple organs including the brain, heart, kidney and lungs.

The growths in her brain associated with TSC often cause seizures. In the days after Camila was born, I noticed the right side of her body seemed to twitch, and my instincts told me she was having seizures. I mentioned it to her nurse, but she dismissed my worries.

We were sent home as if everything were normal, but my gut told me something was wrong. That’s when I called CHOC Children’s. Ahead of our appointment with a CHOC neurologist, I kept a journal to track Camila’s episodes, including what her body did and how often it happened.

The journey begins

We met Dr. Lily Tran, a pediatric neurologist with special training in epilepsy, when my daughter was a few months old. Over the next few years, we tried several different treatment options including the ketogenic diet, steroid treatment and countless medications.

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Camila undergoing monitoring

Most treatments would follow the same pattern — the seizures would stop for a couple months, but then they’d come back stronger than they were before. Any progress Camila made during those seizure-free months would disappear, and she’d regress even further.

My husband and I just wanted to do everything possible for our daughter to have the best outcome.

Before surgery

Over the next few years, our lives revolved around trying to find a treatment that would stabilize her seizures. As open and willing as we were to try new treatment, this disease was relentless. Just before Camila’s fourth birthday, her condition finally regressed to the worst point it had ever been.

She stopped eating, was having 15 to 20 seizures per day, and was constantly throwing up. We had to pull her out of school. We couldn’t leave the house because she could no longer hold her head up, and I was scared to put her in her car seat. I had to take a leave of absence  from my job because my daughter’s health was deteriorating so badly.

We weren’t living anymore; we were in survival mode.

I had been pushing for surgery for a couple years but had wanted to try every other treatment option before we got to that point. When Camila stopped eating, smiling and going to the restroom, I was done trying treatment.

Dr. Tran confirmed through a series of tests that Camila was a candidate for surgery.

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Dr. Lily Tran, a pediatric neurologist and epileptologist at CHOC Children’s

Guides on our journey

Before we met Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC, Dr. Tran said, “I’ve worked with a lot of neurosurgeons in my career, and Dr. Olaya is amazing. I wouldn’t put your daughter in his hands if I didn’t trust him.”

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Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

We knew surgery was the right decision, and that we had a good team in place, but as a mom I was still worried.

Camila’s care team at CHOC walked us through the whole process from surgery to recovery. Since most of Camila’s seizures originated from the left side of her brain, the plan was to disconnect the right and left sides of her brain and remove a portion of her left temporal lobe. This essentially “quieted down” the left side of her brain.

Camila’s care team answered all our questions. Although their job was to care for my daughter, they did a good job caring for us as parents, too.

Any lingering worries I had subsided when I happened to meet the mom of another Dr. Olaya patient at a grocery store in the weeks before surgery. What started as a stranger complimenting my daughter’s blanket turned into sharing stories and experiences and ended with total peace of mind.

I needed another parent to tell me it was going to be OK. She told me not to be scared and reminded me that we were in good hands with Dr. Olaya. That woman also put me in touch with another mom whose child had undergone the same surgery Camila was scheduled for. Being able to connect with a parent who understood exactly what I was going for meant the world to me.

Recovering from epilepsy surgery

Camila’s surgery lasted more than six hours.

While she recovered in the hospital, Dr. Olaya visited her every single day to check on her. He had a wonderful bedside manner.

Deciding to put our daughter through brain surgery was the biggest decision my husband and I had ever made, and I don’t know if we would’ve been as comfortable with that decision without Dr. Tran and Dr. Olaya.

Camila spent a month at CHOC recovering from surgery, and then she moved to a rehabilitation facility. Extensive rehabilitation is needed to help the brain continue healing after surgery. While she was there, she developed hydrocephalus— fluid buildup within the brain. This prompted a trip back to CHOC for a surgery to drain the fluid, and a one-month hospital stay to recover from surgery.  We went back to CHOC for another surgery to drain that fluid and month-long recovery.

Life after epilepsy surgery

These days, Camila is doing amazing. Before surgery, I would have to look at old photos of my daughter to remember what her smile looked like. The first time I saw her smile after surgery, it made everything worth it.

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Camila celebrating her 5th birthday

Although her seizures returned a few months after surgery, they were less frequent and less severe than before surgery. We didn’t want to put her through another surgery, but fortunately we’ve been able to keep seizures at bay through other treatments.

As the parent of a child with special needs, we had learned over the years to find our version of normal. We had gotten used to Camila’s feeding tube – a necessity because she was unable to eat by mouth due to her developmental delay caused by TSC, and her frequent seizures. We had normalized frequent trips to the doctor and kept a bag in the car for emergency hospital visits. That was all normal for us.

We never pictured being able to do things that typical families do all the time: going to the grocery store or the mall, being away from home for more than two hours, traveling, or sleeping well at night knowing your child is safe. Now, those are all realities for us.

Besides regular checkups, we haven’t had to go back to the hospital since we were discharged from surgery recovery.

Pre-surgery, Camila wasn’t able to go swimming because of her frequent seizures. Now, she loves going to the pool and playing with other kids.

We had never let ourselves dream of traveling with my daughter, but we recently took family trips to Disney World and Mexico.

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Camila swimming on vacation

Camila is back in school, and recently won awards for being the most involved and most improved.

All we want is for my daughter to be happy; everything else is just the cherry on top.

My advice to other moms

To another parent reading this whose child has epilepsy, know that you are not alone.

Know that it’s OK not to have all the answers. You will want to be strong for your kids, but this is a scary time. It’s OK to feel scared and sad. It’s OK to have bad days. Allow yourself the space and time to feel upset or sad about your situation.

I’m eternally grateful for the epilepsy mom I met in the grocery store, and the parent she introduced me to as well. In addition to those sources of support, my daughter’s care team helped me get involved with a support group for epilepsy parents. We help one another navigate the medication and treatment process from a parent perspective – something that at times can feel overwhelming. I would encourage any parent who has a child with epilepsy to seek out a similar group.

You and I may be strangers, but we’re really not — we’re family.

Learn more about the CHOC Epilepsy Program

Related posts:

  • Sudden unexpected death in epilepsy: What parents should know
    By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and ...
  • Epilepsy myths: what parents should know
    At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, ...
  • What Causes Seizures?
    Seizures are mysterious. They’re hard to predict and they can’t be seen, except with special tests of the brain. So, what causes seizures?

Sudden unexpected death in epilepsy: What parents should know

By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center

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Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and the cause is not related to an accident or seizure emergency. A seizure emergency could include status epilepticus, where someone has a seizure lasting more than five minutes, or two or more seizures within a short period of time without the person returning to normal in between. Aside from epilepsy, this person is otherwise considered healthy, and no other cause of death can be found. Each year, one in 1,000 people in the U.S. die from SUDEP.

There are several risk factors for SUDEP. These include:

  • Poorly controlled seizures, especially tonic-clonic seizures, characterized by a loss of consciousness and violent muscle contractions
  • Seizures, especially tonic-clonic seizures, that tend to occur in sleep or at night
  • Not taking medications regularly or as prescribed
  • Stopping or changing medications suddenly
  • Young adult age

The exact cause of SUDEP is unknown. More research is needed to understand its cause. Some research suggests that seizures lead to changes in the brain and/or heart’s ability to function, and related breathing difficulties may lead to SUDEP.

For anyone with epilepsy, the ultimate goal is always to minimize seizures as much as possible and strive to become seizure-free. There are several other things people with epilepsy can do to help prevent SUDEP, including:

  • Take your anti-epileptic medications as prescribed. Do not stop medications abruptly without talking to your doctor.
  • Stay healthy by eating a well-balanced diet and getting regular exercise.
  • Avoid potential seizure triggers.
  • Make sure your family members and/or caretakers understand seizure first-aid

Although seizure-alert devices are on the market, there is no scientific data to support the idea that these devices help prevent SUDEP. More evidence is needed to show they can accurately detect seizures and prevent SUDEP.

VIDEO: A CHOC neurologist explains epilepsy vs. seizures

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Epilepsy myths: what parents should know

At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions from the nation’s foremost epilepsy experts.

We also recognize the alarming number of epilepsy myths that can cause confusion for children, families and friends alike. We spoke to Dr. Mary Zupanc, a pediatric neurologist who specializes in the treatment of an epilepsy, and who serves as co-medical director of CHOC’s Neuroscience Institute, to combat the most common epilepsy myths.

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Dr. Mary Zupanc, a pediatric neurologist who specializes in the treatment of an epilepsy, and co-medical director of CHOC’s Neuroscience Institute

Myth 1: Epilepsy is rare.

The truth: About 1% of the population has epilepsy — or more than three million people in the U.S. — but as many as one in five people will have a single seizure in their lifetime. Two or more unprovoked seizures is considered epilepsy. Provoked seizures are caused by a specific medical condition such as trauma, infection, abnormality in brain development, stroke or tumor.

Myth 2: Epilepsy is curable.

The truth: One of the most common questions I hear from parents is, “Is epilepsy curable?” and the answer is, it depends.

There are some epilepsy syndromes that go into remission in childhood, such as simple febrile seizures or childhood absence seizures. In some cases, seizures are the result of a genetic mutation that essentially “turns off” at the time of puberty.

Most of the remaining epilepsy syndromes can be controlled with appropriately-chosen antiepileptic medications, but this does not mean that the epilepsy is “cured.” In these cases, the child would still need medication to maintain seizure control.

Seizures that develop in adolescence will generally continue into adulthood and will not go into remission.

Approximately 60-70% of patients with epilepsy can have complete seizure control with the appropriate antiepileptic medication. The remaining 30-40% will continue to have intermittent seizures and should be in the care of a Level 3 or Level 4 epilepsy center, where specialists can further evaluate them for epilepsy surgery. CHOC is a Level 4 epilepsy center, meaning we offer all forms of epilepsy surgery using the very latest, safe procedures. Learn more about what makes epilepsy centers unique.

Myth 3: Epilepsy surgery is considered a last resort.

The truth: Epilepsy surgery is not a last resort. In fact, the results of epilepsy surgery are often excellent, and in many cases epilepsy surgery can eliminate seizures without causing further neurological injury. The process is complex to determine whether a child is a good candidate for epilepsy surgery, and parents are an important part of that discussion. Learn more about epilepsy surgery at CHOC.

Myth 4: If my child has epilepsy surgery, they will end up with a neurologic defect.

The truth: When epilepsy surgery is done in childhood, the brain still has a high level of plasticity, meaning it can essentially rewrite itself and adapt to change, sending certain functions elsewhere in the brain. The older a child gets, the level of plasticity in the brain decreases.

There are, of course, risks for any type of surgery. Questions related to risk and potential side effects should be an important part of an ongoing conversation with your child’s care team.

Myth 5: You shake or convulse when you have a seizure.

The truth: Another common question I get from parents is, “What does a seizure feel like?” The truth is, seizures are often not what they look like on TV. Seizures do not always cause “convulsions” or shaking.  They can be characterized by staring and not responding.  They can also begin with a funny smell or feeling of doom or dread followed by nausea and staring. Other seizures can begin with a mood change, sudden agitation, unexpected quietness, subtle change of awareness, or repetitive activities including hand movements or lip smacking or puckering.

Myth 6: I will remember my seizure.

The truth: Most people don’t remember their seizures. A small percentage of people will not experience alteration of consciousness and they might remember some of their seizure. However, most people who experience seizures will not remember their seizure and the several minutes that follow the seizure.

Myth 7: My seizure will hurt.

The truth: Parents often wonder if their child’s seizure causes them physical pain. When a child wakes up from the seizure, they may have a headache. If they have bitten their tongue during the seizure, their mouth may hurt. Sometimes children lose control of their bladder or bowel during a seizure, causing embarrassment after a seizure.

Myth 8: If you see someone having a seizure, hold them down and put something in their mouth so they don’t bite their tongue.

The truth: The jaw is full of very strong muscles. Never put anything in the mouth of someone who is having a seizure. They could bite down and break the object, causing pieces of it to go back into their airway.

Do not restrain someone having a seizure. You can, however, move objects away from them so that they don’t hurt themselves. Try to get them on their side if possible because people with epilepsy often have difficulty managing their secretions following a seizure. If they feel nauseated after a seizure, they could vomit, which can result in aspiration into their lungs.

Myth 9: Call 911 after every seizure.

The truth: If the seizure is unusual or prolonged, call 911. If your child has been diagnosed with epilepsy and you are under the care of a pediatric neurologist, follow the seizure action plan that your physician has given you.

Myth 10: Epilepsy is contagious.

The truth: Epilepsy is not an infectious disease, so it is not contagious.

Myth 11: Seizures are fatal.

The truth: It’s terrifying to watch an adult or child have a seizure. They will turn blue or experience hypoventilation (breathing at an extremely slow rate), but if you turn them on their side to avoid aspirating, they will be fine. If a seizure lasts longer than five minutes, it is unlikely to stop on its own. This is typically when 911 is called or the parents or care provider should administer rectal diazepam, a prescription medication designed to stop seizures.

Learn more about sudden unexpected death in epilepsy.

Myth 12: Tics and epilepsy are the same thing.

The truth: Tics are random, stereotyped movements. They are never associated with an altered level of consciousness. They do not occur during sleep or as someone is waking up, which are symptoms associated with epileptic seizures. Here’s what parents should know about children and tics.

Myth 13: Having a seizure means someone is possessed by evil spirits.

The truth: Seizures can be caused by a number of genetic or environmental factors. For most people with epilepsy, an underlying cause is identified. Sometimes, despite the best efforts of the physician and modern medicine, an underlying cause can’t be found. It’s important to remember that epilepsy is a very common condition, affecting more than three million people in the U.S.

Myth 14: All people with epilepsy have cognitive disabilities

The truth: Most people living with epilepsy are cognitively normal. Sometimes people who observe a complex partial seizure― which involves an altered state of consciousness and may include rhythmic jerking, drooling, vomiting or involuntary movements ―may be misconstrued as a psychiatric illness. Epilepsy is not a psychiatric illness. It is a biological condition that causes increased stimulation in the brain.

VIDEO: Dr. Zupanc explains epilepsy vs. seizures

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What Causes Seizures?

Seizures are mysterious. They cause the body to act strangely. They’re hard to predict and they can’t be seen, except with special tests of the brain. So, what causes seizures?

As a neurologist with special training in epilepsy, CHOC Children’s epileptologist Dr. Maija-Riikka Steenari has dedicated her career to understanding seizures and epilepsy, which affects 470,000 children nationwide. In recognition of National Epilepsy Awareness Month, she provides a look into the mystery of seizures.

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Dr. Maija Steenari answers frequently asked questions related to what causes seizures.

What happens in the brain during a seizure?

“Brain cells, called neurons, communicate by electrical activity. If there is a dysfunction, the brain can get overexcited. The electrical activity in the brain surges, causing the neurons to get out of control. The surge of electricity can start in one spot and spread, called a focal onset seizure, or it can happen throughout the brain, called a generalized seizure.”

What does a seizure look like?

“A seizure can manifest in many different ways. When a family comes to us, we ask them what they saw when their child had a seizure. What happened first? Was one arm stiff, were both arms jerking, did the child fall down, did their head turn to one side, were they unresponsive? It’s very helpful if the family has video of a seizure happening. A seizure can make you see, feel and taste weird things. We will ask the child, do you remember having a seizure or not? All these details help us determine if the seizure started from one focus and from which area of the brain, or if it was generalized onset.”

What causes seizures?

“Focal onset seizures can be caused by multiple different things, for example a malformation in the brain or an injury to the brain. Other causes could be a genetic or metabolic disorder which affects how the brain works, or causes a buildup of toxic materials, or is preventing the brain from getting what it needs. Many seizures or epilepsies are considered idiopathic, which means they have no known cause. We are learning more about them and why they happen, and as we do more testing, we find explanations to previous mysteries, often caused by genetic mutations.”

What can tests tell you about seizures?

“We always start with an EEG. That looks at the electrical activity in the brain. We can often see epileptiform discharges on the EEG, which tells us a patient has a tendency of having seizures. I often describe these discharges as sparks of electrical activity. I like to use the lawn analogy when I am talking to families. Think of a brain that has a tendency of having seizures as dry grass. Epileptiform discharges, or sparks, can easily cause a fire (I.e. seizure) on the dry grass. We may also use an MRI to look at the structure of the brain, to look for any abnormalities like a cortical malformation, tumor, or scar tissue from an infection or brain injury such as a stroke.”

How do you treat seizures?

“If the seizure was unprovoked, and after the initial evaluation we have a high suspicion that seizure will reoccur, we recommend starting a medication to treat the seizures. Referring back to the lawn analogy, medication can be considered as watering the lawn, to make the environment more difficult for the sparks to cause more fires. About 60-70 percent of the time, the first medication works when picked correctly. If the seizures continue despite appropriate dosing, we often try a second one. With adding a second medication, the chance of being seizure free is much less likely and If they fail two medications, we need to consider other treatment options, for example epilepsy surgery, diet treatments or vagal nerve stimulator.”

When considering epilepsy surgery, how do you know what part of the brain to operate on?

“Prior to surgery, we gather a lot of information about the seizures, the cause of the child’s epilepsy and the brain structure. We capture typical seizures during an inpatient video EEG study, and we will often lower medication to encourage a seizure to happen. We use detailed imaging techniques to look at the brain structure and how the brain uses energy, to see if we can pinpoint a focal seizure onset zone. We will also do neuropsychological testing, to understand if a child has difficulties in certain brain functions. We will discuss the results with our multidisciplinary epilepsy team, and evaluate if the child could benefit from epilepsy surgery.”

Is everyone’s brain mapped the same?

“No. Most brains are generally mapped the same but it’s not always the case, and sometimes the cause of the seizure has also caused the brain to map differently. A child’s brain is very plastic, and it has adapted around the injury or abnormality. Seizures cause disruption of typical brain development and the more seizures you have and the longer you have them, at some point your brain has learned to have seizures and they are much harder to control. Disruption of normal brain networks can also cause learning difficulties and developmental delays. That’s why it’s important to treat epilepsy as early as possible in children.”

Learn more about the CHOC Epilepsy Program

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Keeping A Close Watch

annual-report-2013-close-watch
annual-report-2013-close-watch-2By age 4, Grace Rogers was riding a bicycle without training wheels. She was roller-blading and skateboarding—an active, spunky kid growing up in Buena Park with an older sister and little brother.

But her mother, Debbie Rogers, would notice that at times, Grace would appear to be off balance. And she thought it odd that ever since Grace was 2, she slept excessively—12 hours a night, plus an afternoon nap.

“She was so coordinated, but then she would trip or fall,” Debbie says. “And all that sleeping. It didn’t make any sense.”

It wasn’t until she was 6, when Grace’s kindergarten teacher noticed the same things—as well as Grace appearing inattentive for brief spells—that Debbie and her daughter began a journey at CHOC Children’s that continues to this day.

That journey has brought Grace and her mother to a new unit at CHOC Children’s at Mission Hospital that specializes in the evaluation and treatment of the disorder afflicting Grace: epilepsy.

A program like no other

Opened in late 2012, the four-bed inpatient epilepsy monitoring unit (EMU) at CHOC Mission augments the eight-bed inpatient EMU in Orange.

Developed and run by world-renowned pediatric epileptologist Mary Zupanc, M.D., director of the Comprehensive Epilepsy Program and CHOC

Children’s Specialists division chief of neurology, the epilepsy program at CHOC Children’s has been designated as Level 4 by the National Association of Epilepsy Centers, making it the only Level 4 program in the state run by a free-standing children’s hospital.

The new EMU at CHOC Mission offers quiet, private rooms for patients like Grace to undergo intensive neuro-diagnostics monitoring that includes long-term video EEG (electroencephalogram) recording to help CHOC specialists monitor patients around the clock to pinpoint exactly where and why the child is having seizures. CT scans and MRIs also are used.

According to Dr. Zupanc, the EMU at CHOC Mission is for patients with lower-acuity epilepsy whose disorders generally are under control. Patients with more intractable epilepsy are treated at CHOC’s main campus in Orange, where they also undergo surgery if medication fails to control their seizures.

The EMUs provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy, says Dr. Zupanc.

Finding an answer

CHOC’s epilepsy program team consists of clinical and support staff, including epileptologists, neurosurgeons, neurologists, neuropsychologists, neuroradiologists, social workers, physical therapists, dietitians, nurses and nurse practitioners, child life specialists and case managers.

“Epilepsy provides multiple challenges for families,” says Dr. Zupanc. “And nobody wants to talk about epilepsy, because unfortunately there’s still a lot of stigma attached to the disorder.”

Epilepsy is a brain disorder in which a person, over time, has repeated seizures, or episodes of disturbed brain activity that cause changes in attention or behavior.  Although much more common than a disorder like ALS (Lou Gehrig’s disease), which affects nerve cells in the brain and spinal cord that control voluntary muscle movement, epilepsy has yet to be a primary focus of extensive attention and research, says Dr. Zupanc.

The epilepsy specialists at CHOC Children’s are determined to help change that.

Grace was diagnosed with so-called absence seizures, which usually last less than 30 seconds and start and end quickly. She was unaware of her seizures—which is common. Sometimes episodes of absence seizures are mistaken for inattentiveness, as was the case with Grace.  Sensing something wasn’t right, her kindergarten teacher called Grace’s mom.

“That’s when I knew I wasn’t imagining things—that I wasn’t crazy,” Debbie says.

Grace ended up in the care of the Neuroscience Institute in June 2011. An EEG detected abnormal activity in Grace’s brain, and she was put on medication.

The medication controlled her seizures, but Grace still was sleeping an abnormal amount, which is common for people with epilepsy. CHOC neurologist, Anjalee Galion, M.D., conducted a sleep study in Orange.

A positive place

Grace was among the first patients to stay in the new EMU at CHOC Mission when admitted in January 2013.

Hospital volunteers kept Grace busy with crafts and activities. She even made a banana split. Therapy dogs also regularly visited her. A television and various electronic devices helped Grace pass the time.

“She would love to order food,” Debbie says. “with the room service and all the fun activities, it was almost like a hotel for kids”

CHOC epilepsy specialists still are working to determine what’s happening inside Grace’s brain. Recent tests have detected abnormal brain activity but no seizures, though Grace continues to sleep as much as 16 hours a day. Another sleep study at the EMU at CHOC Mission is planned.

Says Debbie: “We’re going to keep digging. The doctors say that Grace is a unique patient. She doesn’t fit into a pretty box.”

But it sure is a gift, Debbie adds, that Grace, now 7, is being treated at CHOC.

“It’s been wonderful.”

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