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.

Camila_monitoring
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.

dr-lily-tran-choc-childrens
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.”

joffre-olaya-md
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.

Camila_birthday
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.

Camila_swimming
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

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Dealing with a new epilepsy diagnosis: Frequently asked questions

When you’re a parent, you want the best for your child in every way.  We know an unexpected epilepsy diagnosis can be scary. At CHOC, we deal with the unexpected every day, and have helped many families navigate life after a new epilepsy diagnosis. Here, we share a list of some of the frequently asked questions our epileptologists receive from their patients’ families.

Question: How much notice do I need to give for getting my child’s prescription refilled?

Answer: Please allow for 5-7 days to complete the request, especially for special order medications or controlled substances. Medication refill request should be faxed by your pharmacy to (855) 246-2329.

Question: How much notice do I need to give for forms to be completed?

Answer: Please bring any school, IHSS (In Home Supportive Services) or state forms to the clinic visit for completion. On average, it takes two weeks to get your forms completed and returned to you.

Question: Are there things my child can’t do now?

Answer: When your child’s seizures are under good control, regular physical activity is good for them. However, your child should avoid sports that involve climbing to a high location or contact sports that may result in a head injury.

Question: Will my child be able to swim in the summer?

Answer: Your child may swim once their seizures are under control, but he or she will always need to have 1:1 adult supervision in the water. Your child should never engage in any type of water sports without adult supervision. The supervising adult should be able to swim and have the strength to carry your child out of the water if the need arises. If there is a lifeguard on duty, inform the lifeguard that your child has epilepsy.

Question: Can my child play video games?

Answer: For most children with epilepsy, playing a video game is not a problem. However, some children have seizures that are triggered by light. These are called photosensitive seizures. These seizures may be triggered by flashing lights, such as when playing a video game, watching certain television shows or simply driving past trees on a sunny day.  Ask your doctor if your child has photosensitive seizures.

Question: Can my child ride a bicycle, skateboard, or roller blade?

Answer: Once your child’s seizures are under control, they may participate in these activities. Your child should always wear a helmet when riding a bike or scooter, when rollerblading, roller skating, or skate boarding.

Question: Can my child drive?

Answer: If your child is of driving age, your doctor will sign the necessary paperwork for the DMV if:

  1. Your child has been seizure free for at least 6 months
  2. Consistently taking their medications.

*Frequent lab monitoring may be needed to maintain that your child is safe to drive

Question: What if I am unable to pay for medications, appointments, or testing?

Answer: We have a licensed social worker available to work specifically with the epilepsy team to assist with patient and family needs.

Question: Where do I go for help and support?

Answer: There are advocacy and support groups you can contact that offer help and assistance to families dealing with an epilepsy diagnosis. Please ask your child’s care team for a list of these organizations.

Question: Can my child take over-the-counter medications?

Answer:  Always speak with your primary care doctor before giving your child any over-the-counter medications. Some over-the-counter medications can lower your child’s seizure threshold (which means a seizure may occur). However, this does not happen with everyone, and there is no way to predict whether a seizure will occur.

Learn more about the CHOC Epilepsy Program

Related posts:

  • 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 ...
  • 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, ...

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

dr-lily-tran-choc-childrens

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.

dr-mary-zupanc
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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Restoring a Happy Childhood: Rylee’s Epilepsy Journey

A teacher years ago bestowed an apt nickname on Rylee Christe: Smiley Rylee.

“She’s a very social, happy child,” says her mom, Sara. “She got that name from her preschool teacher. It just stuck forever. She’s always smiling.”

But despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. And Sara wanted nothing more for her young daughter than to enjoy her childhood without this burden.

The problem

In 2013, a pediatrician diagnosed a 4-year-old Rylee with complex partial seizures. Suddenly, Rylee’s mouth would twitch and cause saliva to bubble. She’d be unresponsive to questions. While the family awaited an appointment with a specialist, the seizures quickly increased in frequency, sometimes up to 30 a day.

One day, Sara knew she couldn’t wait any longer and took Rylee to an emergency department. An electroencephalogram, or EEG, detected abnormal brain activity, confirming the pediatrician’s diagnosis of complex partial seizures. Imaging also revealed a lesion on Rylee’s brain.

An odyssey to stop the seizures began. Doctors ordered multiple tests and prescribed several types of medications. But the seizures continued. They moved to another hospital and found some temporary relief, but the seizures began again.

Finding a guide

The Christe family’s next stop was CHOC Children’s, where they saw Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program.

dr-mary-zupanc
Dr. Mary Zupanc, medical director of neurology at the CHOC Children’s Neuroscience Institute and director of CHOC’s Pediatric Comprehensive Epilepsy Program

Dr. Zupanc, who has worked with thousands of patients with epilepsy throughout her career, understood exactly how distressing an epilepsy diagnosis can be for families and how debilitating seizures can be.

“We had been through the woodwork trying to get to where we are now, to find the amazing doctor that we needed,” Sara says.

A plan at last

First, Dr. Zupanc ordered long-term video EEG monitoring of Rylee’s brain activity. Another round of imaging revealed another lesion, this time in the left frontal lobe.

Dr. Zupanc then worked to get Rylee’s seizures under control, trying two medications previous care teams hadn’t. After the seizures reduced to about one or two a night, the Christe family headed home.

Next, Dr. Zupanc set out to stop the seizures for good. It was clear though that Rylee would need more than medication. Dr. Zupanc raised the prospect of brain surgery.

“At first, I was hesitant to move forward because any mention of surgery for your child is terrifying,” Sara says. “But brain surgery? Come on.”

But Dr. Zupanc explained to the family that evidence shows more than 70 percent of patients with seizures may benefit from surgical intervention; that children respond and recover well from surgery because of the plasticity of their young brains; and that surgery should be considered sooner than later.

Taking action

The family agreed to explore the option, moving forward with subsequent testing, exams and lab work needed to determine if Rylee was indeed a surgical candidate. After reviewing the results, a team of CHOC specialists agreed that she would benefit from surgery.

rylee-epilepsy-surgery

Next for the Christes was a brain mapping session at CHOC Children’s Hospital. During the procedure, Dr. Joffre Olaya, a pediatric neurosurgeon who is specially trained in epilepsy surgery, opened Rylee’s skull and placed an electrical grid on her brain. Later, Dr. Zupanc would record Rylee’s seizures to pinpoint the seizure focus. She also stimulated the electrodes on the grid to determine the location of Rylee’s motor area and speech and language center in the brain.

Three hours of testing confirmed Dr. Zupanc’s suspicion that Rylee’s seizures were originating from the left frontal lobe. The physicians were confident if Dr. Olaya removed the lesion there, the seizures would stop.

The procedure wasn’t without risks though. Drs. Zupanc and Olaya cautioned Sara that the surgery could leave her daughter with some impairments like a facial droop, speech problems and even some paralysis.

Sara and Rylee weighed the risks with the benefits of a childhood without seizures and decided to move forward. Three days later, she underwent a successful surgery with no complications.

Back to being a kid

After four days of recovery at the hospital, Rylee and Sara headed home. The next week, Rylee returned to school on an adjusted schedule and was begging her mother to use her roller blades and ride her bicycle.

Now, about six months past her surgery, Rylee, 9, hasn’t had a single seizure. She remains on medication, but it’s likely her dosing may decrease after a few years.

Life for the Christes has changed dramatically.

“Quality of life has improved so much for the whole family,” Sara says. “I can sleep at night. It feels like I haven’t slept in five years.”

rylee-after-epilepsy-surgery

And Rylee, who will likely remain on medication for the rest of her life with close following by her physicians, is in fourth grade and back to enjoying her childhood.

“She loves to dance and sing, and she can remember the words to every song she sings,” Sara says. “She loves to swim and ride bikes, and her favorite thing in the world is mermaids.”

Learn more about the CHOC Epilepsy Program

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