What I’ve learned about life from my 3-year-old daughter

By Bud, father of Emma, a CHOC Children’s patient; and founder of the Squires Guild, a group part of CHOC Children’s Foundation that connects patient parents with each other while raising awareness and funds for CHOC Children’s Hospital and CHOC Children’s at Mission Hospital

My daughter Emma, who is 3 years, 4 months and 8 days old, has a list of diagnoses that read like a medical textbook — I’m sure parents of CHOC Children’s can relate — but, her main diagnosis is pachygyria. It’s a congenital malformation of the cerebral hemisphere that results in unusually thick convolutions of the cerebral cortex, giving her brain a smooth appearance and giving my wife and I an excuse to call her a “smooth operator.” We also call her “the Kartoffel” which means potato in German because she looked like a potato when she was little. The name stuck!

Since her condition deals with the brain and is so severe, all of her other body systems are affected. She isn’t ever expected to roll, sit, walk or talk. She struggles with multiple forms of epilepsy and is expected to develop more forms. She also has poor swallow control, which could cause her to aspirate on foods or liquids.

We found out about Emma’s condition when she was 7 months old. She had missed a few developmental milestones and then started having infantile spasms. We are thankful that our pediatrician, Dr. Dawn Bruner, is part of CHOC Children’s Primary Care Network. She referred us to, CHOC’s Neuroscience Institute where we ultimately received Emma’s diagnosis.

bud-and-emma-outdoors
Bud with his daughter Emma.

With all the medical support we had (and still have), it was hard to take in the news of Emma’s diagnoses. Even after three years, it has been a continual process of mourning the loss of the life we thought we were going to have as well as a tremendous exercise in learning to love someone for who they are, and not who we want them to be.

There have been more medical emergencies with Emma than I can count, and often during those times, I feel inefficient, broken. Dads are supposed to protect their children, make it all better and make sure nothing hurts them. But caring for Emma has made me learn that I am just a different kind of dad than what I originally thought I was going to be. I am still strong and effective, and most importantly I have allowed myself to be totally me, just like Emma is totally her.

Emma is fearless. Anything she does, whether it’s laughing, crying, yelling or singing, she does with full conviction. She is the kind of person I hope to be like a little more each day. She is my absolute joy, the light of my life. I am but a humble peasant to my Princess Emma and I don’t mind at all.

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Bud and Emma at home.

It is because of Emma that I am inspired to learn new music, read new books—all based on whether I think she would enjoy them. She has taught me that the more time and energy I put into pushing back against and denying the brutally honest reality that she will not live long or peacefully, the less time and energy I have to truly experience life with her. And as her dad, that’s my biggest joy in life — really living with Emma.

My greatest hope is that she knows that she is loved. I hope she finds her life, however long or short it might be and in whatever way she can, to be rich and meaningful — just like she’s made my life rich and meaningful simply by existing.

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CHOC recognized as one of nation’s best children’s hospitals

best-childrens-hospitals-7specialtiesCHOC Children’s is one of a select number of pediatric facilities nationwide to have been ranked today as a best children’s hospital by U.S. News & World Report.

The following CHOC specialties are honored in the 2020-21 Best Children’s Hospitals rankings: neonatology; cancer; diabetes and endocrinology; neurology and neurosurgery; orthopaedics; pulmonology; and urology. Both orthopaedics and diabetes and endocrinology earned a “Top 20” spot. 

“At CHOC, we are committed to the highest standards of care, safety and service – and this honor reflects that unwavering dedication,” said Dr. James Cappon, CHOC’s vice president, chief quality and patient safety officer and interim chief medical officer. “Not only does this recognition of our excellence in these subspecialties, including two on the top 20 lists, validate our efforts, but it also offers our patients and families additional assurance of our commitment to their health and safety.”

The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.

The U.S. News Best Children’s Hospitals rankings rely on clinical data and on an annual survey of pediatric specialists. The rankings methodology factors in patient outcomes, such as mortality and infection rates, as well as available clinical resources and compliance with best practices.

Learn more about Best Children’s Hospitals rankings.

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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.

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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?
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    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 ...
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    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.

My daughter’s journey from seizures to surgery

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

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

A mother’s instinct

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

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

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

The journey begins

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

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Camila undergoing monitoring

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

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

Before surgery

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

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

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

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

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

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

Guides on our journey

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

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.

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Camila swimming on vacation

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

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

My advice to other moms

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

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

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

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

Learn more about the CHOC Epilepsy Program

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Dealing with a new epilepsy diagnosis: Frequently asked questions

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

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

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

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

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

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

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

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

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

Question: Can my child play video games?

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

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

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

Question: Can my child drive?

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

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

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

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

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

Question: Where do I go for help and support?

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

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

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

Learn more about the CHOC Epilepsy Program

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  • My daughter’s journey from seizures to surgery
    By Celeste P., mom of CHOC Children’s patient Camila When my daughter Camila was going through epilepsy surgery, I read stories about other kids’ success, and gleaned hope from them. As ...
  • Sudden unexpected death in epilepsy: What parents should know
    By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and ...
  • Epilepsy myths: what parents should know
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