All posts by CHOC Children's

My son’s journey with congenital cystic pulmonary malformation (CPAM)

By Monica Cruz, mother of CHOC Children’s patient Tavik

When my fiancé Ryan and I found out we were having another baby, we were excited but also a little overwhelmed. Our firstborn son Raiden, was barely a year old, and very strong willed. We weren’t quite ready for another, but we knew we could manage.  We had no idea the journey that lay ahead of us and our new baby, but today we are so grateful that he’s healthy and happy.

Tavik_after_CPAM_surgery
I am so grateful that my son is happy and healthy, after surgery to remove his CPAM.

During an ultrasound when I was 26 weeks, my OB/GYN found a mass on the baby’s lung. They said it was likely congenital cystic pulmonary malformation (CPAM). CPAM is a mass or lesions of abnormal lung tissue that forms during pregnancy. The mass or lesions can vary in size. It is usually only in one lung and does not function as normal tissue. We did two more ultrasounds to confirm the diagnosis, and then we were referred to a maternal-fetal medicine specialist (MFM).

Our MFM confirmed that our baby, who we named Tavik, had CPAM.  The cause of this condition is unknown and. only 1 out of 25,000 pregnancies are affected. Research shows, that this abnormality is not related to anything the mother did or didn’t do during pregnancy. Some think it may be caused by genetics, but there isn’t enough research to confirm this.

There was still a lot of time left in my pregnancy, so Tavik’s lungs had more time to grow—but so did the mass. On the ultrasounds, we could see that his heart had been pushed off to the right side. This was a lot to take in and made the next few months extremely stressful.

Babies in the womb who have CPAM are also at risk for hydrops. Hydrops are fluid-filled bubbles in the uterus that can develop during pregnancy. If found, it is likely to be fatal when associated with CPAM. I had ultrasounds every two weeks until Tavik’s due date.

Prenatal counseling

We knew Tavik would need care after he was born, so our MFM referred us to Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC who has special training and expertise in fetal conditions.

My fiancé and I went to CHOC and met Dr. Yu, who explained everything that was going on with the baby in utero, and what would happen after he was born.

The good news was that most babies with CPAM are born with no symptoms and can go home after a few days in the hospital. Surgery to remove the mass on the lung usually comes a few months later, when the babies are bigger, and better able to handle anesthesia. If CPAMs are not removed, they can cause breathing problems or serious lung infections, and sometimes they can even become cancerous later in life.

Dr. Yu was honest with us and educated us that there are some babies who do have complications at birth due to the CPAM and can need immediate surgery after delivery. Not knowing what that outcome would be, was one of the hardest things I’ve ever had to process.

Dr. Yu was so knowledgeable and made us feel more at ease about our baby’s diagnosis. We knew that Tavik was in great hands.

Tavik’s birth

Tavik was born on Nov. 15, 2018 weighing 7 lbs., 10 oz. and 21 inches long. We were so lucky and beyond happy that he came out without any complications, and that he didn’t need immediate surgery. Unfortunately, later that night when the doctors came back to check in on us, they noticed he was working extra hard to breathe. They weren’t sure if this was related to his CPAM. He was admitted to the neonatal intensive care unit (NICU) at the delivery hospital and was given oxygen and put on CPAP (continuous positive airway pressure). CPAP delivers constant air pressure into a baby’s nose to help the air sacs in the lung stay open and prevent sleep apnea.

During our NICU stay, doctors performed a chest X-ray and ultrasound to get a better picture of the mass in his lung. They noticed he also had an abnormal blood vessel carrying blood to the lung mass.

Tavik spent eight days in the NICU before he was healthy enough to go home. The doctors determined that his breathing troubles at birth were not caused by the CPAM. He just had some residual fluid from the C-cection.

Two weeks later, we had an appointment with Dr. Yu so he could meet Tavik and we could make surgery plans. A few weeks after that, Tavik had a CT-scan so Dr. Yu could see exactly what was going on inside Tavik’s lung. That gave Dr. Yu a more precise roadmap for surgery.

Surgery day

When Tavik was three months old, he underwent surgery at CHOC Children’s Hospital. It was scary to hand over my baby for surgery, but looking back now, everything seemed to go so smoothly and quickly.

family before cpam surgery
Ryan and I with Tavik before surgery to remove his CPAM.

During the three-hour surgery, Dr. Yu removed the affected part of Tavik’s lung and repaired the blood vessel. While surgery was in progress, a member of Dr. Yu’s team came out to the waiting room every 30 minutes to provide an update to Ryan and me.

When surgery was over, Dr. Yu came out to let us know that he had removed half of Tavik’s left lung, sealed off the artery, and everything had gone smoothly. He showed us photos of what he had been looking at through his scope during surgery.  He did this to also give us a better understanding of what had been going on inside of our son. It was really neat to see.

Dr. Yu performed the surgery thoracoscopically, using a microscope and two tools. That means only three very small incisions had to be made to remove the entire mass. Tavik only has three tiny incisions on his left Side. It’s mind-blowing to think that you can safely remove half a baby’s lung through three tiny incisions. Since Tavik had this surgery as a baby, the remaining portion of his lung will be able to grow and compensate for what was removed as he grows.

Tavik_minimal scarring_cpam
Dr. Yu performed the surgery thoracoscopically, using a microscope and two tools. That means only three very small incisions had to be made to remove the entire mass.

Tavik spent only three nights in the hospital. The first two days after surgery were hard for Tavik; he was groggy from the anesthesia, and he made some sad sounds, which was a little heartbreaking for us to hear as parents. Since Tavik was too little to tell the doctors how he was feeling, it was up to me to help them manage his pain. Thanks to the awesome rooms at CHOC I was able to stay with Tavik the entire time, both day and night. During this time, I stayed with Tavik, while Ryan and Raiden stayed close to CHOC at the Ronald McDonald House. We had stayed there during our unexpected NICU stay, and they invited us back during Tavik’s surgical stay. Without them, our family wouldn’t have been able to stay together and so close to Tavik.

By the third day after surgery, Tavik was alert, smiling and getting right back to his happy self. It’s seriously amazing how fast babies heal! I was a little nervous getting ready to leave on the fourth day. The doctors constantly reassured me by telling me that he was healing wonderfully and that he was in great shape to head home. They were right. By the next day, Tavik was doing even better—he had no pain or discomfort and his incisions were already fading. You would have never known that he just had a major surgery.

A few weeks later, we had a follow-up appointment with Dr. Yu, who confirmed everything still looked great and Tavik was now CPAM-free.

tavik-dr-yu-cpam-surgery
Tavik with his surgeon, Dr. Peter Yu.

Tavik today

Although Tavik underwent a major surgery as a baby, looking at him now, you’d never know what he had been through. You can barely see his scars, and he’s growing like any little boy should—he’s in the 80th percentile for height and weight. His prognosis is great, and we look forward to a normal life with him.

tavik-birthday-cake
Tavik enjoying cake at his first birthday party.

My son is such a sweet, loving, happy boy with a little bit of spice to his personality. He absolutely loves music and always wants to play in the water. He has so much fun going on walks with his older siblings Leila and Raiden,

Tavik is our little miracle baby! He has kept us on our toes since before he was born and continues to do so today. He’s always making us laugh and smile.

We are so blessed and are so grateful that he is healthy.

Related posts:

    6 headache hygiene tips for children

    Headaches usually are brief and can be caused by many things, including too little sleep, stress, or a concussion. Some headaches last longer and come with other symptoms. Very rarely, headaches can be a sign of something serious. Learn more about different types of headaches in children, and what parents can do to help.

    dr-mary-zupanc
    Dr. Mary Zupanc, a pediatric neurologist and co-medical director of the CHOC Children’s Neuroscience Institute

    Dr. Mary L. Zupanc, a pediatric neurologist and co-medical director of the CHOC Children’s Neuroscience Institute, offers tips for parents on headache hygiene— or healthy habits to reduce the likelihood, frequency and severity of headaches.

    1. Maintain regular sleep habits

    If your child goes to sleep and wakes up at approximately the same time every day, Dr. Zupanc says, their likelihood of suffering from a headache decreases. Bedtime and wake-up times should not vary significantly from weekday to weekend. Adolescents have sleep phase delay, meaning their brains do not want to go to sleep until later at night and they want to sleep in. This is normal behavior, but school schedules rarely accommodate this adolescent neurobiology.

    1. Exercise regularly

    Children should get at least 30-40minutes of physical activity three to four days per week, she adds. However, the full 30-40 minutes doesn’t need to be all at once. You can break it down into smaller sessions.

    1. Eat a well-balanced diet. Avoid meal skipping.

    A child’s eating habits can have a direct effect on their susceptibility to headaches, Dr. Zupanc says. To encourage kids to eat healthy, including them in the food preparation process whenever possible—from meal planning to grocery shopping to prepping fruits and vegetables in the kitchen. Kids are more likely to eat what’s in front of them if they feel like they had a choice and hand in preparing it.

    Some foods may trigger headaches in children. Limit the intake of processed or fried foods. Overly restrictive diets may prompt an unhealthy relationship with food or body image. If you are unsure if certain foods may be triggering your child’s headaches, consult your pediatrician.

    1. Stay well hydrated.

    Headaches are commonly caused by dehydration. There is a link between increased water intake, decreased headache severity, and improved quality of life. At CHOC Children’s, we recommend that children drink the number of 8-ounce cups of water equal to their age, with a maximum of 64 ounces for children over age 8. This means your 1-year-old would drink one 8-ounce glass or water, your 5-year-old would drink five 8-oz glasses of water, etc.

    1. Limit caffeine intake

    Caffeine tolerance differs from person to person, but the general recommendation is 200 to 300 milligrams per day. A standard cup of coffee has around 100 milligrams of caffeine, compared to a large coffee drink that can have over 400 milligrams of caffeine. If you have too much caffeine, you can experience headaches, heart palpitations, elevated blood pressure, insomnia, or irritability.

    1. Play

    Yes, really! Kids are busier than ever these days, and an over-scheduled child is likely to suffer stress, which can lead to headaches, Dr. Zupanc says. Spending time outdoors, reading for pleasure, and playing sports for fun rather than in a competitive environment are all good ways to help cut down on stress, she says. In addition, screen time — including tablets and smartphones —should be limited. Learn more about screen time limits for kids.

    Mindfulness, or relaxation techniques, can help kids and teens build the coping skills they need to address issues like stress and anxiety, Zupanc adds. Learn more about mindfulness tips for your children.

    Studies have shown that cognitive behavioral therapy, in combination with preventive medication, has helped adolescents with chronic migraine headaches.

    1. Keep a journal

    If your child experiences frequent headaches, keep a journal to track their headaches so you can identify a pattern, and show this to your child’s pediatrician. In your headache journal, keep track of:

    • Headache start date and time
    • What happened just before the headache?
    • How much did your head hurt, on a 0-10 pain scale?
    • Where did your head hurt?
    • Was the pain throbbing (pounding) or dull?
    • Were there any other signs or symptoms associated with the headache, such as a change in vision, tingling of an arm or leg, or weakness?
    • What did you feel just before and during the headache?
    • What did you do to make yourself feel better?
    • Did you feel better, on a 0-10 pain scale?
    • Headache end date and time

    Your child’s doctor may adjust their diet, headache hygiene routine, or their over-the-counter pain relief regimen, Dr. Zupanc advises.

    There are some, albeit rare, situations where a child’s headache warrants a trip to the emergency department, Dr. Zupanc says, including:

    • A thunderclap headache: severe, sudden onset of pain that occurs anywhere in the head and grabs your attention like a clap of thunder. Pain usually peaks within 60 seconds to a few minutes.
    • Any headache that comes with weakness or numbness on one side of the body, changes in consciousness or awareness, or change in balance.
    • Blurred, double or loss of vision that persists after the headache resolves.

    Sporadic headaches rarely require brain neuroimaging, such as a CT scan or MRI scan of the brain.

    Frequent headaches that are increasingly severe can suggest an underlying brain problem. Brain imaging may be necessary. If your child experiences the following symptoms, ask your pediatrician for a referral to a pediatric neurologist for further evaluation and possible imaging:

    • Headaches associated with weakness or numbness in an arm or leg, or balance problem. In this case, immediate follow-up care is warranted.
    • Headaches that wake a child out of sleep
    • Headaches associated with projectile vomiting
    • Headaches that increase with Valsalva maneuver (such as bearing down for a bowel movement)
    • Headaches associated with a seizure
    VIDEO: Dr. Zupanc explains headaches

    Related posts:

    • What’s Causing your Child’s Headaches?
      By Dr. Nancy Shan, pediatric resident at CHOC Children’s Headache complaints can be bewildering and frightening to many parents. Most are caused by a benign (simple) problem or primary headache disorder. ...
    • Migranes: Not Just an Adult Ailment
      Think only grown-ups get migraines? Think again. This painful neurological condition is also common among children. In fact, one in 20 children – or about 8 million children nationwide – experience ...
    • Kids and Headaches
      Headaches in children are not uncommon. Learn what to do if your child has a headache and how to establish good habits that can help keep headaches at bay.

    What we’re thankful for this year: 2019

    The  physicians, nurses, staff and patients that make up the CHOC Children’s healthcare community have much to be thankful for this year. In addition to celebrating our 55th anniversary, expanding our Primary Care Network and preparing to open the Thompson Autism Center, we’re grateful to be able to offer best-in-class care to kids in Orange County and beyond. A few members of the CHOC community share what they are most thankful for this year.

    KimberlyChavalasCripe
    Kimberly Chavalas Cripe, president and CEO, CHOC Children’s

    Kimberly Chavalas Cripe, president and CEO, CHOC Children’s

    “I have the privilege of experiencing the magic of the holidays through the eyes of our patients.  Their courage, strength, and optimism inspire our team year-round, and drive us to push the limits of what is possible to ensure the very best outcomes for our community’s children.  From bringing preventive care closer to home, to expanding access to mental health services, CHOC’s mighty brigade is dedicated to keeping kids happy and healthy. And for that, I am especially grateful.”

    chris-furman
    Chris Furman, chairman, CHOC Children’s Board of Directors

    Chris Furman, chairman, CHOC Children’s Board of Directors

    “I am grateful for serving as chairman of CHOC’s board of directors.  It’s incredibly heartwarming for me and the entire board to help CHOC’s physicians, staff, volunteers and donors preserve the magic of childhood for thousands of children in Orange County and beyond.”

    Emma_Sandhu
    Emma Sandhu, vice president, administrator and chief nursing officer, CHOC Children’s at Mission Hospital

    Emma Sandhu, vice president, administrator and chief nursing officer, CHOC Children’s at Mission Hospital

    “I make an effort to live each day with gratitude. I am especially thankful for my family and for having the opportunity to be together this Thanksgiving. I am grateful for the things that I learn each day that help me to be the leader that this amazing organization deserves. Anyone that knows me knows how much I love CCMH and how blessed I feel to be a part of CHOC Children’s. A mighty brigade of passionate associates working side by side each day to serve our most precious gifts, our children.”

    Isabella Valdovinos
    Isabella, age 10

    Isabella Valdovinos, age 10, CHOC Children’s patient

    “I’m thankful for my mom, and the nurses and doctors at CHOC who took out my appendix and took such good care of me. I’m looking forward to a healthy and happy Thanksgiving with my family – especially the mashed potatoes and gravy.”

    Liz_Hawkins
    Liz Hawkins, volunteer, Mental Health Inpatient Center

    Liz Hawkins, volunteer, Mental Health Inpatient Center

    “As the first volunteer in CHOC’s Mental Health Inpatient Center, I’m humbled to be of service in the simplest of ways, be it a warm smile, a cup of juice, a compassionate ear or a shared laugh with our patients, families and staff. I’m grateful for all of the little things that I experience with our patients; from painting nails, to working on a puzzle, to learning a new game and even just acting silly by rolling around in the grass in our outdoor play area. I’m honored to be embraced so warmly by our patients and incredible staff as a part of the MHIC “Dream Team.” My husband Ryan and I are thankful for our entire MHIC’s dedication to treating our patients with dignity and respect every day and resetting the standard of care for pediatric mental health in this country. We are making history every day at CHOC. Lastly, I am grateful for all of the lessons our MHIC patients teach me: to face challenges head-on, to develop resiliency and self-awareness, to remember that you are never alone and most importantly, that the little things are always the big things. ”

    Sterns
    Ralph and Sue Stern, CHOC Children’s supporters

    Sue and Ralph Stern, CHOC Children’s supporters

    “As the grandparents of 10 grandchildren ages 5 – 17 years and all residing in Orange County, we are so grateful to have CHOC in our backyard. To us CHOC is not just a children’s hospital, it’s a healthcare system staffed by superb physicians, along with caring and attentive nurses, technicians and administrative staff. Each time one of our grandchildren has been admitted to CHOC Children’s Hospital as a patient, he or she has been discharged in much better condition. Our gratitude to Kim Cripe, CHOC’s president and CEO, for providing outstanding leadership and to Kara Kipp , CHOC Foundation assistant vice president, and Brianne Ortiz, manager of the Cherese Mari Laulhere Child Life Department, and the rest of the child life team for the impact of their work.”

    Liam Katz
    Liam, age 5

    Liam Katz, age 5, CHOC Children’s patient
    “I am thankful for CHOC, child life, the playroom, the treasure chests, all the doctors and nurses, and the wonderful families and friends we have met.”

    dr-tom-megerian-choc-childrens
    Dr. Tom Megerian, pediatric neurologist and medical director, Thompson Autism Center at CHOC Children’s

    Dr. Tom Megerian, pediatric neurologist and medical director, Thompson Autism Center at CHOC Children’s

    “I am so grateful for the opportunity that the CHOC executive leadership team and the Thompson Family Foundation have given us to open a state-of-the-art autism center. This will allow us to provide a medical home for families and children suffering from Autism Spectrum Disorders. My team and I are thankful that we will be able to promote early diagnosis, treatment of co-occurring disorders, education and research for families suffering from ASD.

    I am especially appreciative for the gift and privilege of working with colleagues across the CHOC healthcare system in helping make the Thompson Autism Center a reality. Everyone from rehabilitation services, CHOC Children’s Specialists, neurology, psychology, information services, project management, the CHOC Foundation, marketing, and my newfound family within the Thompson Autism Center who have been so supportive and single-minded in their dedication to our patients. Finally, I am grateful to the families who, every day, put their faith and trust in us to care for their children. Thank you for enriching our lives by helping us aspire to be better clinicians, caregivers and citizens.”

    Kimberly Burks
    Kimberly Burks, charge nurse, neonatal intensive care unit (NICU), CHOC Children’s at Mission Hospital

    Kimberly Burks, charge nurse, neonatal intensive care unit (NICU), CHOC Children’s at Mission Hospital

    “As we near the end of 2019, I feel so thankful for my CHOC Children’s at Mission Hospital family. Each member of the team — from our volunteers to our managers — is an integral part of our goal to provide excellent patient care. When things get busy, our team pulls together and works hard to get the job done. I am thankful to work in a neonatal intensive care unit (NICU) that values patient- centered care and infant developmental care so much.”

    chief residents
    2019-2020 chief residents

    Dr. Timothy Hicks, Dr. Stephanie Lee, Dr. Majid Husain, Dr. Amanda Schafenacker, chief residents

    “For the past three years we have had the honor and privilege of learning from the incredible patients, physicians and medical staff at CHOC Children’s as part of the UC Irvine-CHOC Pediatric Residency Program. This year, we are thankful to be serving as the Pediatric Chief Residents. We are especially thankful for our 90+ residents who serve as the frontline providers taking care of the children of Orange County and beyond, our attending physicians and administrative staff for their commitment to education and teaching, and CHOC leadership for their unyielding support and dedication to our training program. Lastly, as pediatricians, we are grateful have the opportunity to partake in CHOC’s mission to nurture, advance and protect the health and well-being of our children.”

    Jessica Ochoa, emergency department admitting representative

    “I am thankful for the opportunity to work here at CHOC. I am thankful for all of my coworkers and all of the nurses because without them we would not be able to make a difference in these families’ lives. I am thankful for all the wonderful families that I have been able to meet while working here and last but not least, I am thankful for all the children that come in and continue to brighten our day with all of their little personalities. Happy Thanksgiving to all CHOC employees and CHOC families.”

    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 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

    Related posts:

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

    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

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