CHOC Walk in the Park 2017: Why I Walk – Team Miranda

Seven years ago, Miranda woke up screaming in the middle of the night from unbearable head pain. She couldn’t move or recognize her parents, and then she collapsed.

Miranda’s parents rushed her, a 10-year-old at the time, to a local hospital. Physicians there initially told them to wait three days for observation.

Dr. Jason Knight, a CHOC Children’s pediatric critical care specialist and medical director of CHOC’s emergency transport services, was on call at that hospital that day, and met with Miranda’s parents, Regina and John.

An Emergency Transport to CHOC

“Dr. Knight explained what was happening better than anyone else at the hospital,” Regina remembers. “He suggested we transport her to CHOC so she could be seen by pediatric specialists. We were scared to move her, so we asked Dr. Knight if he would transport Miranda if she were his own daughter. He said yes, and we trusted him.”

choc walk
Dr. Jason Knight, critical care specialist, chair of the department of medicine, and medical director of emergency transport services at CHOC Children’s

Dr. Knight recalls, “As the physician covering the local hospital that day, it was my responsibility to assure that Miranda received the appropriate care in a timely manner. As soon as I assessed her condition and reviewed the CT scan of her brain, it was clear to me that Miranda needed to be transferred to CHOC immediately. I contacted Dr. Michael Muhonen, a pediatric neurosurgeon at CHOC, and coordinated Miranda’s transfer to CHOC.”

Scans revealed she had an arteriovenous malformation (AVM), a tangle of weakened blood vessels that had ruptured and started to bleed in her brain. Upon arrival at CHOC, Miranda immediately underwent neurosurgery with Dr. Muhonen, medical director of the neuroscience institute at CHOC.

“Miranda was critically ill upon arrival to CHOC. She reminded me of my own three daughters― innocent, beautiful and vulnerable. It was with this in mind that I approached her operation― do what it takes to keep her brain alive and functional,” recalled Dr. Muhonen.

choc walk
Dr. Michael Muhonen, medical director of the neuroscience institute and director of neurosurgery at CHOC Children’s

After a successful four-hour surgery, Miranda was placed in a medically-induced coma for several days. Her parents didn’t know if she would survive.

“When Miranda was in a coma, I told Dr. Knight that I wanted to take a photo of her so that I could show her when she woke up, but that I didn’t want to take it if she wasn’t going to make it,” recalls Regina. “For a few days, he wouldn’t let me take the photo because he wasn’t sure if Miranda was going to survive. Then one day, Dr. Knight told me it was ok to take a photo of her, and I knew that meant she was going to make it.”

John adds, “My family is intact today because of wonderful doctors like Dr. Knight, Dr. Muhonen and their teams. It’s just amazing what CHOC does. We are so blessed.”

The Long Road to Recovery

Miranda’s recovery process included child life specialists, physical therapy and rehabilitation. She spent one month at an inpatient rehabilitation facility followed by an additional three months of outpatient care learning how to walk and talk again.

The first year after surgery was critical. Miranda saw Dr. Muhonen every few months for checkups to monitor her brain, as well as a CHOC ophthalmologist to make sure her sight was progressing.

“The AVM and the clot were removed successfully, and Miranda has recovered with minimal long-term deficit,” says Dr. Muhonen. “My reward is not only seeing a disease-free brain on the post-operative MRI, it is the omnipresent smile and effervescent personality that Miranda still has, despite her near-death experience.”

Everything came back except her sight. She lost 25 percent of her vision in both eyes, but that hasn’t stopped her from dancing, her favorite activity since age 8. Miranda’s parents had to supervise her at all times for the first year after surgery to make sure she didn’t have a seizure (a possible side effect of brain surgery), which meant that her mom went to every dance practice and every pool party to ensure her daughter’s continued safe healing.

Giving Back to CHOC

A few months after Miranda’s surgery, her family was invited to participate in CHOC Walk in the Park by friends.

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Miranda and her family at their first CHOC Walk in the Park, just a few months after her emergency neurosurgery

“After what we went through, we felt closely tied to CHOC. We walked that year and fell in love with the event. We realized this was an affordable way to give back to CHOC,” recalls John. “My favorite memory was our very first CHOC Walk. Miranda walked alongside us, which was a huge accomplishment. A couple months before that, we weren’t sure if she was ever going to walk again. To see her walk on her own was the most memorable moment for me.”

The family’s first CHOC Walk was especially impactful for Miranda herself.

“I will never forget attending my first CHOC Walk one year after my surgery. I remember seeing other patients participating in the walk with their own team just like me, only they needed walkers or wheelchairs to have the capability of walking the entire distance. Seeing other patients that were struggling to do the simple task of walking, something that people take for granted, made me reflect back to being a patient at CHOC, where I once struggled with relearning how to walk during physical therapy,” recalls Miranda. “From that moment on, I promised myself I would always participate in the CHOC Walk and give back as much as I could, not only to represent the patients who couldn’t recover as fast as I did, but also for the patients that don’t make it. I am reminded every day by the scar on the back of my head of how blessed I am to have been a patient at CHOC.”

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Every year since her emergency surgery, Miranda’s family rallies dozens of friends to participate in CHOC Walk in the Park.

Every year since then, Miranda’s parents gather dozens of friends, family and co-workers to join Team Miranda, the CHOC Walk team they formed in honor of their daughter. They formed their team with the help of the Littlest Angel Guild, a philanthropic group that raises funds to support the mission of CHOC.

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Miranda and her family at the 2012 CHOC Walk in the Park

“We encourage people we meet to participate in CHOC Walk to help provide the best medical care for the children in our community. You never know if or when CHOC’s services will be needed for your children, for your friend’s children, for your neighbor’s children, or even a stranger,” says John, whose employer, Hill Brothers Chemical Company also sponsors CHOC Walk, in addition to the other philanthropic events benefiting CHOC. “We learned firsthand how much everyone at CHOC cares – the doctors, the nurses, the administrators, and staff throughout CHOC all genuinely care about the children and their families.”

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Team Miranda at the 2013 CHOC Walk in the Park

Experience at CHOC Inspires Future Career

Now a senior in high school, Miranda is preparing for graduation and heading off to college. Inspired by her experiences at CHOC, she is planning to major in psychiatry and dreams of becoming a pediatric optometrist.

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A Parent’s Guide to Understanding the Teen Brain

The mind of a teenager can be at times mysterious and illusive. A pediatric neurologist, a pediatric neuropsychologist and a pediatrician who works with adolescents at CHOC Children’s offer advice for parents on how to better understand and connect with their teen.

Navigating adolescence with a still-developing brain

Adolescents’ brains are not yet fully developed during their current stage of life. Physical development can start as early as 8 years old, but the tail end of brain development doesn’t occur until closer to age 25. The more your child is exposed to new things, skills or experiences, the more connections their brain will develop.

“The brain is constantly developing through young adulthood. Just like we wouldn’t expect a baby to be able to speak or a toddler to be able to understand certain consequences, we have to have appropriate expectations for our adolescents,” says Dr. Sharief Taraman, a pediatric neurologist.

Dr. Sharief Taraman offers advice on the teen brain
Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s

This constant development can lead to experimentation and in turn, a healthy decision making process.

“On the one hand, adolescents are more apt to experiment and make poor choices because their brains are still developing, but they are also more able than adults to learn from their mistakes and alter their perspectives,” says Dr. Jonathan Romain, a pediatric neuropsychologist. “I see adolescence as a period of great potential for growth and development.”

Dr. Jonathan Romain comments on the teen brain
Dr. Jonathan Romain, a pediatric neuropsychologist at CHOC Children’s

A parent’s role in teen brain development

The consequences of teens’ actions can help them link impulsive thinking with facts. This helps the brain make these connections and wires the brain to make this link more often. Parents play a crucial role in helping teens talk through consequences and decision making.

“Part of a parents’ role during this time in their child’s life is understanding that adolescents are practicing new reasoning skills they haven’t used before,” says Dr. Alexandra Roche, a pediatrician who works with adolescents. “Having abstract thinking is one new reasoning skill they need to practice. When they are trying to make a decision, it’s helpful for parents to let them explore various consequences.”

Dr. Alexandra Roche comments on the teen brain
Dr. Alexandra Roche, a pediatrician who works with adolescents at CHOC Children’s

The primary part of the brain developing during this time is the frontal lobe. As this area develops, teens are better equipped for abstract thinking and executive functioning, such as planning their day and making decisions. The frontal lobe is also involved with connections and how we socialize with people as well.

“They’re learning that if A happens, then B or C is going to happen after that. Parents get frustrated at how adolescents handle peer relationships and how extreme their feelings can be, but these may happen because those connections are being formulated. Talking through consequences helps good connections to form,” says Dr. Taraman. “Decision making takes practice. If you want to play guitar, you take lessons and practice, and it makes you better. If you only take one guitar lesson, you’re not going to learn how to play. Decision making is the same thing; it takes practice and it is never too early to start teaching our kids how to make good decisions.”

How to teach decision-making skills to your teen in an interactive way

Remember that you are a role model for your teen’s behavior. When it’s time to make a big decision, show them how to make a matrix, weigh the criteria of what is important to you and them, and teach the decision making process in an interactive way.

Modeling reasoning behavior with your teen will affect how they explore and understand downstream consequences, says Dr. Roche.

“If they approach you and want permission to do something, have them do research via respectable sources and find out what’s appropriate for their age. Involve them in the decision making process. That’s how you can give them good tools instead of just deciding things for them,” says Dr. Taraman.

Talking to your kids is essential in the digital age. It’s common for teens to want to be on their smartphone around-the-clock, but that can spur an extreme fear of missing out. Figuring out how to turn off both the devices and the need to be constantly plugged in is important.

“Try setting technology-free zones or times in your home, such as the dinner table. Take turns going around the table and sharing the highlight of your day. It can spark conversations about other things that happened during your day and how you dealt with them. Teens can learn by example,” says Taraman.

Your teen’s friends also play a crucial role in their development, but peer pressure is not always a bad thing.

“Peer pressure can be positive in many cases, like trying a new sport or joining a new club at school. Experimentation is the way adolescents learn how to interact with their environment and peers,” says Dr. Roche. “Kids should be curious and try different activities.”  Helping them plan ahead for unexpected events, such as being offered drugs or alcohol, can help your teen make the right choice when it counts.

How to calm an overly emotional teen

When teens are overly emotional and fixating on a problem they feel is the end of the world, there are several things parents can do to calm them down so they can start talking through their emotions.

“It’s very common for teens to be very dramatic. Whatever is happening in their world can seem like it’s the most important thing that has ever happened to them,” says Dr. Roche. “Help them identify the emotion they are feeling, and what is making them angry or excited, for example. Identifying the root cause of the emotion and then connecting that back to how that affects their decision making is important.”

Dr. Romain encourages parents to give their teen some space but remind them that you are available to listen.

“Not every problem needs a solution. Sometimes they just need someone to listen to them in a safe space. Encouraging journaling can also be a productive way of getting thoughts and feelings out,” he says.

Listen first and then expand on their statement.

“If they express hurt or disappointment, try to get them to more openly explain why something hurt their feelings,” says Dr. Roche. “Did they misinterpret a conversation?”

Allowing them to solve their own problems teaches independence and prepares them for adulthood.

“If you fix all their problems for them as a teen, then when they go off to college they won’t know how to deal with problems. We don’t just give them a driver’s license and tell them to hit the road. First they drive under supervision of a parent or guardian, and then they gradually gain more independence and responsibility,” says Dr. Taraman.

The power of positive reinforcement

Remind teens that they are resilient and competent. They may have trouble remembering past times they have overcome obstacles.

“Positive reinforcement helps encourage certain behaviors you’d like your teen to model,” says Dr. Taraman. “If they want to go to their friend’s house after school and they ask if that’s ok, say “no problem, thank you for asking.” And if they instead tell you they are going, say “Don’t you need to ask permission first?”

Positive reinforcement will also help them develop strong self-esteem. As they develop their identity, encourage your child to reflect on successes as well as challenges.

“During adolescence kids are coming up with self-identify, personal morals and ethics. This all relates to self-esteem. Comparing yourself to others is common but it can also set unwieldy expectations. Identify their unique strengths (for instance music, but not math) and focus on encouraging them to pursue those,” says Dr. Roche.

When to seek help for your teen

Adolescents are prone to addictive behaviors. If they use certain chemicals such as drugs and alcohol, it can hard wire their brain in a certain way. If they are experiencing anxiety or depression and it is not acknowledged and treated, they are more likely to experience those into adulthood.

“It is important to keep an eye out for symptoms of depression and anxiety that extend beyond normal grief and loss. Check in with your child periodically and be aware of changes in behavior pattern. Persistent irritability, sadness, disrupted sleep, and lack of interest and isolation are some things to look out for that likely warrant a check-in with a counselor or psychologist,” says Dr. Romain.

A few days of emotional outbursts might just be a normal sign of adolescence, but if they are persistently practicing abnormal behavior, it may be a sign to seek additional help. Remind your child that you are there for them, says Dr. Taraman, but also empower your teenager to explore the resources available to them, with or without their parents’ help. Suicide hotlines (1-800-Suicide) or adolescent clinics can help them obtain resources without the help of their parents.

“Because adolescents have so many obvious physical changes, it’s easy to forget the cognitive changes going on in this phase. It’s the most exciting change for kids but can be very frustrating for parents,” says Dr. Roche. “Remember to enjoy the experience of watching your kid develop into an adult.”





Learn more about Adolescent Medicine




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How Much Do You Know About the Brain?

There’s no better time than Brain Awareness Week to get a little more familiar with your melon. Test your knowledge about the brain with this quiz.

  1. Which part of the brain is responsible for reasoning, planning, speech and movement, emotions and problem-solving?
    1. Frontal lobe
    2. Parietal lobe
    3. The spinal  cord
  2. This part of the brain handles the perception of stimuli like touch, pressure, temperature and pain.
    1. Temporal lobe
    2. Occipital lobe
    3. Parietal lobe
  3. The perception and recognition of sounds and memory are the responsibility of this part of the brain.
    1. Occipital lobe
    2. Temporal lobe
    3. Cerebellum
  4. Which part of the brain oversees vision?
    1. Spinal cord
    2. Cerebellum
    3. Occipital lobe
  5. Which is false about the brain stem?
    1. It’s responsible for the brain’s highest level of thinking and perception.
    2. It controls the flow of messages between the brain and the body.
    3. It consists of three parts: the medulla oblongata, pons and midbrain.
  6. What is true about the cerebrum?
    1. It’s named after its bell-like shape.
    2. It plays a large role in motor control.
    3. Common signs of cerebellum damage are related to vision.

Check your answers below!

brain quiz

 

  1. Which part of the brain is responsible for reasoning, planning, speech and movement, emotions and problem-solving?
    1. Frontal lobe. This is one of the brain’s four lobes, which comprise the cerebrum.
    2. Parietal lobe
    3. The spinal  cord
  2. This part of the brain handles the perception of stimuli like touch, pressure, temperature and pain.
    1. Temporal lobe
    2. Occipital lobe
    3. Parietal lobe- also responsible for understanding someone’s position in their environment.
  3. The perception and recognition of sounds and memory are the responsibility of this part of the brain.
    1. Occipital lobe
    2. Temporal lobe- also responsible for language and emotion.
    3. Cerebellum
  4. Which part of the brain oversees vision?
    1. Spinal cord
    2. Cerebellum
    3. Occipital lobe- the smallest of the brain’s four lobes. 
  5. Which is false about the brain stem?
    1. It’s responsible for the brain’s highest level of thinking and perception. False- while the upper parts of the brain tackle higher level matters, the brain stem is responsible for the most basic of body functions like breathing, food digestion and blood circulation. 
    2. It controls the flow of messages between the brain and the body.
    3. It consists of three parts: the medulla oblongata, pons and midbrain.
  6. What is true about the cerebrum?
    1. It’s named after its bell-like shape.
    2. It plays a large role in motor control. The cerebellum has some other minor roles, but it is chiefly tasked with movement and coordination. 
    3. Common signs of cerebellum damage are related to vision.

Learn more about neurology at CHOC  Children’s.

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What Parents Should Know About Infantile Spasms

With Infantile Spasms Awareness Week recognized Dec. 1 through 7, we spoke with a CHOC Children’s neurologist about this type of epilepsy that occurs in young infants typically between ages 3 and 8 months.

Infantile spasms should be considered a medical emergency due to the potentially devastating consequences on the developing brain, Dr. Mary Zupanc, chair of neurology at CHOC, says. Immediate treatment is critical because many children with infantile spasms go on to develop other forms of epilepsy.

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Dr. Mary Zupanc, chair of neurology at CHOC Children’s, treats patients with infantile spasms

“A developing brain undergoing an ‘epileptic storm’ essentially becomes programmed for ongoing seizures and cognitive/motor delays,” she says.

Here’s what parents should look for when potentially identifying infantile spasms:

  • Infantile spasms often happen in clusters, with each spasm occurring every five to 10 seconds over a period of three to 10 minutes or longer
  • Though there is almost always a cluster of spasms in the morning when the child awakens from sleep, infantile spasms can occur at any time during the day or night

If infantile spasms are suspected, parents should seek a referral to a pediatric neurologist immediately. CHOC neurologists admit these children urgently to the hospital for long-term video electroencephalogram (EEG) monitoring to confirm the diagnosis.

If infantile spasms are confirmed, the first line of treatment employed by CHOC neurologists is a high-dose adrenocorticotropic hormone, or ACTH. The course of therapy is about six weeks, and the treatment is administered by injection. Because parents are often initially afraid to inject their baby, CHOC neurologists and nurses work closely with families to help them become comfortable with the process before heading home.

The effectiveness of ACTH may be as high as 85 percent, and the treatment has better success rates if started within four to six weeks of seizure onset. Seizure control and a normalized EEG reading mark a successful therapy.

Children undergoing ACTH might have some side effects including high blood pressure, increased appetite and weight gain, elevated sugar in the blood, temporary suppression of the immune system, and sometimes an upset stomach. All side effects are monitored during treatment and disappear at its conclusion.

The causes of infantile spasms vary. Some children may have tuberous sclerosis, a multisystem disorder; abnormalities in the brain’s formation; stroke; an infection such as meningitis or encephalitis; trauma; or genetic disorders such as Down syndrome or defects in the metabolism of proteins, sugars, and fats.

Learn more about CHOC Children’s Neuroscience Institute.

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Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

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Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

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Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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After Years of Seizures, Overcoming Epilepsy

Deena Flores has her sights set on a big party next spring for her daughter, Mareena.

It’s not for her birthday, but rather an anniversary of sorts. By May 2017, Mareena will have lived without seizures longer than she endured them.

It’s a milestone that once seemed unreachable for the Flores family, who finally got relief from years of seizures when they found help from CHOC Children’s Neuroscience Institute.

“The seizures flipped our family. We didn’t go anywhere. We wouldn’t want to leave her with anyone. It was a deep dark hole for a few years,” Deena says. “To see her flourish and open her wings and experience life now is amazing.”

epilepsy surgery
Mareena is flourishing after epilepsy surgery.

Now 9, Mareena began experiencing seizures at around 10 months old. After a normal birth and infancy, she suddenly started rolling her eyes backward and going limp.

For years, the family went from hospital to hospital and doctor to doctor, looking for an explanation.  Walking, talking and developing normally, Mareena would grow out of it, physicians told the family.

By age 4, Mareena was enduring up to 20 seizures a day, mostly linked to sleep. Medications were not working. Deena and her husband would take turns sleeping in their daughter’s room, desperate to record every seizure in hopes of finding a pattern.

Mareena’s parents reached their breaking point in fall 2011. One morning while eating breakfast, Mareena seized, fell from her chair and hit her head on the tile floor. That was enough.  Mareena needed help badly, and they turned to Dr. Mary Zupanc  and CHOC’s comprehensive epilepsy program.

epilepsy surgery
Dr. Mary Zupanc, director of the comprehensive epilepsy program and chair of neurology at CHOC Children’s

“Within the first five minutes of the appointment, Dr. Zupanc told us that Mareena’s medication wasn’t working, and because epilepsy is a progressive disease, it was critical that we find a new solution quickly,” Deena recalled.

Mareena began undergoing extensive testing, including long-term video electroencephalogram (EEG) monitoring to determine seizure type and seizure frequency. During that time, Dr. Zupanc first broached the subject of surgical intervention to help Mareena.

“The idea of brain surgery was scary,” Deena recalled. “But at the same time, it was a relief, especially after all the years we lost while trying to convince doctors that something was wrong”.

In May 2012, the family began the process for surgical intervention, including an MRI scan of the brain to look for subtle structural changes in the brain and a PET scan, which looks at glucose metabolism in the brain.

Mareena’s case was then reviewed by a group of CHOC physicians. The physicians, including Dr. Zupanc, were in agreement that Mareena should have epilepsy surgery.  However, in order to identify the exact seizure focus, invasive EEG monitoring was required. This means that electrodes had to be placed directly on the surface of the brain. Over a series of days, Dr. Zupanc and the other epilepsy specialists determined that the seizures were coming from the brain’s left temporal lobe. Next, surgeons removed that portion of the brain.

Mareena has been seizure-free ever since. She still takes one low-dose of antiepileptic medication, but her visits with Dr. Zupanc have reduced significantly. She no longer requires long-term video EEG monitoring or other studies.

Mareena is now headed for third grade.  Though she does have some mild cognitive delays—due to the underlying cause of her epilepsy and her prior high seizure frequency, she is thriving and doing very well. Deena says people are shocked when they learn about Mareena’s history.

“She’s a walking miracle,” Deena says.

Learn more about epilepsy surgery.

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Seizure-Free at Five, Thanks to Epilepsy Surgery and ROSA Robot

Five-year-old Ian Higginbotham recently enjoyed his best summer yet. He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten. These are milestones most kids and parents, alike, eagerly welcome. But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler. When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician. One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out. She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. To her surprise, doctors diagnosed her son with epilepsy.   Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program. A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions. CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring. Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness. The pattern of Ian’s seizures suggested they were originating from the right frontal lobe. Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family. Its effects are multifaceted and extensive. Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them. Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.  The multidisciplinary team agreed Ian was a candidate for epilepsy surgery. For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort. Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage. Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

epilepsy surgery
Ian recovering from epilepsy surgery at CHOC.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm. The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths. The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures. By using the robot, Dr. Olaya avoided performing a craniotomy (surgery to cut into the skull, removing a section called a bone flap, to access the brain).

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room. It reduces blood loss and risk of infections. Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA. He wasn’t in any pain, there was no swelling. It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

epilepsy surgery
After epilepsy surgery, Ian has been able to do things other kids his age are doing, like riding scooters.

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different. In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery. He enjoys playing with his younger brother and his friends. And, whether inspired by his experience with ROSA or not, Ian loves robots.

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Son’s Epilepsy Journey Inspires Mom to Help Others

The spread inside a conference room in CHOC Children’s neuroscience unit would be a welcomed sight for any parent: a box of glistening bagels, jugs of steaming coffee, and a warm smile from Kathy Lear.

Whether it’s by offering nourishment or a kind word of encouragement, Kathy stands ready to help a fellow parent of a child contending with epilepsy or other complications.

“We’re trying to do these breakfasts once a week,” she says. “It’s nice to help out.”

After all, it’s a journey that Kathy’s intimately familiar with.

After her son Matthew’s typical birth and toddlerhood, signs that something was amiss appeared in kindergarten. Suddenly, Matthew would start ignoring his parents. Thinking it odd, they made an appointment with the pediatrician.

But before the appointment rolled around, Matthew’s school called one afternoon. Administrators were concerned that he had experienced an absence seizure – a type wherein someone suddenly stares off into space.

At CHOC, an electroencephalogram confirmed that Matthew was indeed d having seizures. He was diagnosed with epilepsy on Halloween 2008, just days before his sixth birthday.

Matthew began care under Dr. Mary Zupanc, director of CHOC’s pediatric comprehensive epilepsy program. The years that followed would be marked by a series of attempts to control Matthew’s seizures, including antiepileptic medication, a special diet and two epilepsy surgeries.

The epilepsy surgeries were palliative procedures, which would partially control the seizures, but not cure the epilepsy or stop all of the seizures. Inevitably, the seizures, although less frequent and less severe, would start again.

Ultimately, Dr. Zupanc recommended implantation of a new type of vagus nerve stimulation device, which sends electrical signals to Matthew’s brain to stop the seizures. Implanted by CHOC neurosurgeon Dr. Joffre Olaya, the device has brought relief to Matthew and his family.

“It disrupts any seizures that might be starting,” Kathy says. “It’s caused a dramatic increase in his ability to respond to us. It has made just a world of difference.”

epilepsy

Matthew now has quarterly visits to the hospital. Now 13, Matthew is doing well, attending special education classes in middle school, and participating in several sports through a recreational league.

“He’ll never be off his medication, but we do hope that we might have seizure freedom again,” Kathy says. “He’ll never not have to deal with epilepsy.”

Between his surgeries, seizure monitoring and other visits, Matthew’s time in the hospital totaled at least six months, Kathy estimated. And without the support of their family, friends and community, the journey would have been nearly impossible for the Lear family, Kathy says.

“We as a family couldn’t have done it without the support of our family and friends,” she says. “It really does take a village. Between bringing us meals, visiting in the hospital, coming back and forth to sports practices – just little things like that really helped.”

That support network has also helped give Kathy the time to make it a priority to help others who are also dealing with epilepsy.

She’s a parent representative on one of CHOC’s clinical practice councils, which help evaluate and improve patient care. Kathy also serves on CHOC’s Family Advisory Council, a diverse group of adult family members who meet regularly to provide input on decisions, initiatives and discussions.

That role brought her to the recent breakfast in the neuroscience unit. Made possible by a grant, the spread is hosted by CHOC’s Patient- and Family-Centered Care team, which supports CHOC’s philosophy that patients and families are part of the care team.

The breakfasts are designed to offer support and comfort to families who find themselves on the unit for days at a time, often while their children are undergoing testing or experiencing other complications.

“Sometimes it’s as simple as parents asking where they can find toothpaste. I tell them that we can definitely help,” Kathy says with a laugh.

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Children and Tics: What Parents Should Know

People of all ages can experience repeated involuntary movements called tics, but they are most prevalent in children. Nearly one quarter of all children experience this genetic disorder that becomes most visible in school-aged children.

Common motor and vocal tics include:

  • Blinking
  • Shoulder shrugs
  • Neck twitches
  • Throat clearing or sniffling
  • Coprolalia, involuntary and repetitively utters obscene words

All tics tend to wax and wane in severity and frequency. The tics themselves can also change over time, says Dr. Mary Zupanc, chair of neurology and the director of CHOC Children’s pediatric comprehensive epilepsy program. This means that a child with simple childhood tic disorder can have repetitive eye blinking during one point in time, and during another phase, can have irregular but repetitive shoulder shrugging, and later, intermittent head twitching.

children tics
Dr. Mary Zupanc

Childhood tic disorders are very common in young children. It is a “spectrum disorder,”  with some children having only intermittent, isolated tics, and having multiple motor and vocal tics. If these tics last greater than one year, the diagnosis is Tourette’s syndrome, which is simply a more severe form of childhood tic disorder.

Preserving Self Esteem

“Tics alone will not hurt a child, but we certainly want to preserve a child’s self-esteem, and not allow them to be embarrassed by their tics. Vocals tics can be especially problematic in the school setting,” says Dr. Zupanc. “Often times, the biggest treatment of tics is reassurance to the child and family, in addition to providing education on when it is appropriate to suppress a tic or not. Family and child counseling are often important, so that the child maintains his or her self-confidence.”

Treatment Options

Medication may be recommended in some severe cases. Pediatric psychologists who have training in behavioral modification can help children learn to suppress a specific tic.

Tics often disappear around the time of adolescence in many cases of childhood tic disorders and Tourette’s syndrome, although there may be concurrent co-occurring health challenges that are more problematic, Dr. Zupanc says. Learning disabilities, attention deficit hyperactivity disorder, obsessive compulsive disorder, and oppositional defiant disorder frequently appear in tandem with either childhood tic disorder or Tourette’s syndrome.  These co-morbidities may require medications for effective treatment.

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Strokes in Children: What Parents Should Know

Many might picture a stroke patient as middle aged or elderly, but the reality is that the ailment occurs in people of all ages, a CHOC Children’s neurologist says.

A stroke happens when blood flow to the brain stops, and many types exist, Dr. Sharief Taraman says.

Dr. Sharief Taraman

  • Ischemic strokes, most common in children, prevent oxygen and nutrients from reaching the brain. This causes brain cells to die, and can result in permanent damage to the brain and body’s functioning.
  • In hemorrhagic strokes, which are uncommon in children, the blood vessel breaks, which floods the brain with blood and damages brain cells.
  • Perinatal strokes occur in babies near their time of birth, usually during delivery or right after birth because the infant lacked oxygen during delivery.

Stroke causes

Each year, between six and 13 of every 100,000 children will experience a stroke, and they are most likely to happen between a woman’s 28th week of pregnancy and one month after birth.

In older children, strokes are often caused by another condition that can affect blood flow to the brain, Dr. Taraman says. The largest risk factors for stroke in children include heart disease (19 percent), blood clotting disorders (14 percent) and dehydration (11 percent).  About a quarter of young stroke patients have a combination of risk factors.

Further, children with some, few or no vaccinations are more than seven times more likely than fully vaccinated children to have a stroke, Dr. Taraman says. This is likely because many vaccine-preventable illnesses, such as chicken pox, can injure the brain’s blood vessels.

Girls who have migraine headaches that show symptoms before pain begins – a type called “migraine with aura” – are also at a higher risk of stroke. Clinicians are still working to understand the connection fully. There is evidence, however, that some types of oral contraception can exacerbated the migraine-stroke risk. Patients should discuss the risks with their physician when selecting a medication, Dr. Taraman says.

What to look for

Signs of stroke vary widely in children, depending on their age and the resulting brain cell damage. Symptoms include slurred speech, blurred vision, memory loss or sudden weakness.

Children who have experienced a perinatal stroke sometimes tend to favor one hand more than the other. They may also grow normally, but development may occur at a much slower pace than other children. Those whose strokes caused more substantive brain damage may also experience seizures. Often, signs of perinatal stroke don’t materialize until months or years later.

It’s important that children who have experienced a stroke get medical treatment as quickly as possible. Parents who suspect their child has had a stroke should see a doctor immediately or call 911.

Stroke diagnosis, treatment

Strokes can be difficult to diagnose because their symptoms can be subtle and patients who have strokes often have another illness, Dr. Taraman says. To diagnose strokes, physicians rely on blood tests and a variety of imaging techniques.

Treatment varies among patients. Those who are diagnosed during the episode can receive medication that can off-set potential damage. Others may receive treatment for the underlying condition, such as a heart problem, or a resulting condition, such as seizure.

Regardless, children also require extensive rehabilitation that includes neuropsychology; developmental monitoring; educational intervention; and physical, occupational, and speech therapies. Most of the functional recovery occurs in the first two to three months after the stroke.

CHOC has a collaborative team to treat pediatric stroke aggressively. Learn more about the CHOC Children’s Neuroscience Institute.

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