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.
How much notice do I need to give for getting my child’s prescription refilled?
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.
How much notice do I need to give for forms to be completed?
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.
Are there things my child can’t do now?
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.
Will my child be able to swim in the summer?
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.
Can my child play video games?
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.
Can my child ride a bicycle, skateboard, or roller blade?
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.
Can my child drive?
If your child is of driving age, your doctor will sign the necessary paperwork for the DMV if: ~ Your child has been seizure free for at least 6 months ~ Consistently taking their medications.
*Frequent lab monitoring may be needed to maintain that your child is safe to drive
What if I am unable to pay for medications, appointments, or testing?
We have a licensed social worker available to work specifically with the epilepsy team to assist with patient and family needs.
Where do I go for help and support?
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.
Can my child take over-the-counter medications?
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.
Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.
“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”
Brodie’s journey to a diagnosis
Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.
The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.
“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.
The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.
During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.
Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.
They found a tumor.
Another starting line
“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”
“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”
Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.
“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.
The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.
A doctor unlike the rest
Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.
“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”
Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.
“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”
Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.
Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.
“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”
Finding a familiar face at CHOC
While Brodie was admitted to CHOC Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.
Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.
Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.
“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”
Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.
Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.
“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”
Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.
“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”
With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.
If your child experiences a concussion, it can be scary to think about the effects on their developing brain. The good news is, more than 85% of concussions heal well if managed properly early on.
“Early, appropriate treatment prevents kids from having to come see me as a neurologist,” says Dr. Sharief Taraman, pediatric neurologist and director of the CHOC Concussion Program. “It’s important to do as much as we can to prevent kids from getting a concussion, prevent reinjury, and treat them as aggressively and appropriately as possible in the early intervention stages.”
Follow these do’s and don’ts for proper prevention and treatment of concussion. If your child does sustain a concussion, be sure to see your pediatrician as soon as possible.
Do protect a young brain
Athletes should be taught safe playing techniques, equipment maintenance and to follow the rules of the game. Always wear a helmet while playing contact sports like football, hockey and lacrosse, and during activities like horse riding, biking, skateboarding or snowboarding. Helmets should fit correctly and be in good condition.
Don’t miss the signs
A concussion isn’t always obvious. Watch for these signs in your child or teen, especially while they are participating in sports. Symptoms may take up to a day to appear after an incident.
Nausea or vomiting
Fatigue or drowsiness
Sensitivity to light or noise
Numbness or tingling
Dazed or stunned
Trouble falling asleep
Feeling mentally “foggy”
Feeling slowed down
Confused about recent events
Sleeping less or more than usual
Difficulty concentrating or remembering
Forgetful of recent information or conversations
Answers questions slowly or repeats questions
Seek emergency care immediately if your child or teen has experienced unconsciousness for any amount of time or has changes in alertness, convulsions or seizures, muscle weakness, persistent confusion, repeated vomiting, unequal pupils, unusual eye movements or walking problems.
Do sit on the sidelines
The most important thing your child should do if they are injured during a sports activity is to immediately stop playing. It’s crucial that they avoid more hits, jolts, shakes or bumps to the head or spine. Getting back in the game is not worth the risk. Remember, the signs of concussion aren’t always clear, so when in doubt, sit it out.
Athletes may not want to tell their coach if they had a concussion. Encourage them to come forward if they have an injury, or if they notice a teammate is injured. Young athletes should never ignore a head injury or impact to the head.
Don’t skip treatment
Even a mild concussion should be evaluated by a doctor. Get in to see your child’s pediatrician as soon as possible.
When a concussion is severe or symptoms won’t go away, talk to your doctor about a referral to the CHOC Concussion Program, which includes pediatric sports medicine specialists, neurologists, neurosurgeons, neuropsychologists and rehabilitation therapists who are all trained in concussion management.
Don’t rush recovery
Rest is important immediately following a concussion. For 24-48 hours, your child should stay home from school and get plenty of quiet time and mental rest. This includes limiting activities like:
Attending loud events
After the first 24-48 hours, light activities may help speed up recovery. Most children should be able to tolerate some school after a few days. If they need to miss more school than that, contact the school and your doctor to help intervene with short-term adjustments. Before returning to sports, be sure that symptoms have resolved and get medical clearance from your child’s doctor.
Do prevent future injury
Parents, coaches and athletes should be extra cautious to prevent future concussions. One concussion is rough enough, but additional injury is even worse. Research has shown that repeated jars to the head can have long-lasting effects on the brain. And, if a child or teen suffers a second concussion before the first concussion heals, they are at risk for Second Impact Syndrome, a life-threatening condition.
“The CDC has called concussions an epidemic in the United States,” Dr. Taraman says. “Kids really do get into trouble if a concussion is not recognized, and if we don’t take the proper steps to get them better and avoid those second injuries, which can be catastrophic.”
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 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.
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.
At CHOC, 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.
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.
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.