Author Archives: ChildrensMN

4 ways to monitor your kids’ social media use

Use social media to help your kids develop self-control habits. (iStock photo)

Maggie Sonnek

If Jennifer Soucheray had a Twitter handle, it probably would be something clever like @JentheMamaHen or @MrsSouchRocks. But this third-grade teacher and mom of three teens doesn’t have a Twitter account.

Or Instagram.

Or Snapchat.

But her three kids do. So, she and her husband, Paul, have had to find ways to monitor their social media use without being, “like, totes uncool.”

I asked Soucheray, along with a few others, to share a few of their tips and best practices when it comes to kids and social media. Here’s what they had to say:

1. Use social media to help your kids develop self-control habits

Whether it’s texting, tweeting or using Facebook, these parents tout the benefits of putting limits in place early. According to the Soucheray household, texting and Twitter are the most common ways their kids communicate digitally.

“We know their phones are lifelines to their friends,” Soucheray said. “They need these tools otherwise they’ll be ostracized. But as parents you have to develop parameters for what’s acceptable use.”

One way these parents have put boundaries in place? All devices are turned in to Mom and Dad before bedtime.

2. Validate kids every day, offline

Soucheray, who taught middle school for 12 years, says it’s extremely important to validate your kids every day. She said that’s one reason why Facebook and other social media tools are so popular — because we’re all looking to be validated. (Author’s note: Not going to lie; there have been times that I’ve fallen into this trap and checked in on a status update or picture I posted to see how many “likes” it has received. And when the number is higher or the comments are positive, for some reason, I feel a little better.)

“If a kid doesn’t hear she’s pretty or smart by someone who cares about her, she’s going to look for that somewhere else,” Soucheray said.

Dr. Robyn Silverman, a child-teen-development specialist and body-image expert, agrees.

“Teens are defining themselves during adolescence,” she wrote on her blog. “They are figuring out where they fit into their social world and hoping that others look at them favorably.”

Soucheray and Silverman say it’s important to talk about your kids’ true gifts.

“Make sure your children understand that their strengths — such as their kind heart, conscious nature or musical ability — are recognized,” Silverman said, “and really make a difference.”

subscribe_blog3. Use the tools for good

One thing that surprised me as I chatted with parents and teachers is: Kids are using social media more than just a platform to post “selfies.” They’re also using it as a homework-helper.

Dan Willaert, a geometry and AP statistics teacher and Cretin-Derham Hall wrestling coach, tweets out reminders and practice problems to his followers on a regular basis.

“I’ll write out a problem, snap a picture and then tweet it,” Willaert said. He has a Twitter account for wrestling, too, and often sends updates about tournaments, schedule changes and snow days.

4. Be present

Soucheray admits she doesn’t have the right answer or the perfect balance for monitoring tweets and texts, but her one piece of advice is something all parents can take with them. And that’s simply to be present.

“Dig in and be there with them… be in the moment,” she said.

Maybe someday @JentheMamaHen will tweet out that advice to her followers. But for now, she has papers to grade and dinner to make. Her Twitter days will have to wait.

Maggie Sonnek is a writer, blogger, lover-of-outdoors and mama to two young kiddos. When she’s not kissing boo-boos or cutting up someone’s food, she likes to beat her husband at Scrabble.

‘I’m a cancer survivor’

Ted Sibley's work as a doctor has taken him to Central and South America. (Photos courtesy of Ted Sibley)

Ted Sibley’s work as a doctor has taken him to Central and South America. (Photos courtesy of Ted Sibley)

This is part four of a four-part series written by Ted Sibley, MD, a former Children’s cancer patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.

Part 1: Cancer patient reflects on diagnosis — 20 years later

Part 2: Cancer delivers another blow

Part 3: Cancer-patient-turned-doctor adds new title: Dad

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo.

Ted Sibley, MD

Childhood cancer survival rates are on the rise. Current estimates are that there are more than 325,000 children, teens and adults living in the United States who are survivors of childhood cancer, and each of us has a story to tell.

If we were too young to understand what was happening, our parents could tell you about the struggles they went through — their worries and tears they cried for us when we were too young and weak. Some of us have made it into adulthood, and we can tell you how cancer is something we carry with us. We are part of a collective group who faced death at a young age and now are living life in a newfound light. And we are the lucky ones. For every story like mine, there are countless children who lost their fights with cancer:

  • Children who had bright futures, energizing smiles and did nothing wrong to have lost their lives so soon
  • Children who should have grown up, graduated high school, attended college and changed the world
  • Families who are left with memories of these children
  • Parents and siblings who can tell you the brave fight their child or sibling fought and how they feel about their vacancy in the world

Much like me, they can tell you exactly when and where they were when they discovered that their young loved one had cancer. And they can tell you about their life before and after cancer crept its way into their world and changed them forever.

A younger Ted with Children's Bruce Bostrom, MD

A younger Ted with Children’s Bruce Bostrom, MD

During my time as a nursing assistant, I had the pleasure of sharing my story with patients and their families, but I also got to see firsthand the loss of a child taken from the world too soon.  Late one December, a young boy undergoing chemotherapy spent Christmas in the hospital because his blood counts were too low to go home. I spent time in his room, talking with his mother about how my roommates and I had had a very small Charlie Brown-esque tree on our table years before, but we did not have a star to place on the top. The young boy made arts and crafts to pass the time that evening, and the next day I came to work, his mother handed me a gift. He had made a star for the top of our tree. I thanked him and promised that this would be on my tree for years to come. This little boy lost his fight with cancer within a couple of months, but his small balsa wood star with yellow paint and gold trim sits atop our tree every year. It is one of the most precious things I own and reminds me of those who have lost their fight with a terrible disease.

The impact of being a cancer survivor has changed my life since I was diagnosed. The life I lead now is correlated to the experiences and person that I had become after undergoing treatment. Since my wife and I adopted our first son, I have finished medical school and residency, and I am now a practicing emergency medicine physician. I have had the opportunity to become a father two more times since our first adoption. My wife and I are parents to an Ethiopian boy along with another Colombian child, making an incredibly busy (but wonderful) family. I have become heavily involved in international medical work and am the medical director for a team that provides medical care to the indigenous people of the Amazon River. I have been able to travel extensively throughout Central and South America to work in various hospitals and clinics. I also have been allowed the opportunity to extend my medical services to countries throughout Africa and use the medical knowledge I’ve received through my training to help others on an international scale. My cancer history led me to the life I have now.

The Sibley family

The Sibley family

My wife also has been affected deeply by cancer. Though she was not directly involved in the initial effects of my therapy, she has experienced the ripple effects of my treatment. She changed the way she saw our marriage after my diagnosis of infertility. She has now become a mother who has embraced our adopted children and focused her heart and mind to be a champion for international and domestic orphan rights. She has led numerous teams to work throughout Haiti in orphanages and works endlessly for homeless children in our current city. She has volunteered our home a designated “Safe Families” house for homeless children. We provide temporary placement for various children from our area while their parents secure housing and job opportunities. We now have three sets of bunk beds in our home, countless extra sets of shoes and clothing for boys and girls, and we are just a phone call away from getting additional children who need a temporary place to stay.

Sometimes I worry that my past will strike again when I least expect it. Do you ever have a stomach ache or feel short of breath and wonder if you have a tumor in your abdomen that has now spread to your chest? Probably not. I try not to dwell on such things. But, on more than one occasion, I have taken myself in for a CT scan — just to make sure. Because germ cell cancer secretes the same hormone as a pregnant female, I will occasionally purchase a pregnancy test at the store and test my own urine. (No, not pregnant; I actually just had gastric reflux.) But with every mundane cough, body ache or pain that I experience, the thought that cancer could recur remains in the back of my mind.

This year, I turned 33 and reflected on what 20 years of cancer survivorship has meant to me. I wonder what type of person I would have been without cancer. For better or worse, my experience had substantial effects on my loved ones and me. I’m a different person today because of May 18, 1995. To my wife, I am a husband. To my parents, I am their son. To my kids, I’m their dad. I’m also a friend, brother and physician. But to those who know my history, I’m also proud to be called a cancer survivor.

Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.

Cancer-patient-turned-doctor adds new title: Dad

Ted Sibley, MD, has provided care for people internationally.

Ted Sibley, MD, has been a part of medical teams throughout Central and South America. (Photos courtesy of Ted Sibley)

This is part three of a four-part series written by Ted Sibley, MD, a former Children’s cancer patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.

Part 1: Cancer patient reflects on diagnosis — 20 years later

Part 2: Cancer delivers another blow

Part 4: ‘I’m a cancer survivor’

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo.

Ted Sibley, MD

The next couple of months were some of the most difficult in my and Erin’s relationship. First were long nights on call, delivering babies in the labor and delivery unit, followed by a six-week rotation in pediatrics at Children’s — the same hospital where I had been a patient and had worked in the pharmacy and as a nursing assistant. Now, I was a medical student doing 30-hour on-call shifts. Still angry and wounded by the fertility diagnosis, the vigor and laughter that I used to share with the oncology families had vanished. I put on a happy face and tried to give them hope like I once had, but on the inside I was hurting.

The disease I had beaten and put behind me was now staring me in the face. Only, this time, it was different. This time, I couldn’t fight infertility with surgery and chemotherapy. My wife and I had to look inside ourselves, at our relationship, and to our strength in God. We had to accept our situation for what it was and determine if we were going to let infertility bring us down or make us stronger.

During my pediatrics rotation, we finally broke. We had attempted a couple of months of fertility treatments, with no success. The emotional price for my wife during that summer and fall had become too high. We also had exhausted our finances trying to become pregnant. At dinner one night, she decided that she had had enough. Previously, we had been involved in international medical teams and traveled throughout Central and South America.

subscribe_blog“What are we doing?” she said. “We are throwing hundreds and thousands of dollars at trying to become pregnant! We’ve seen children without parents and now we desire to be parents and cannot have biological children! Why don’t we build our family through adoption like we talked about during our medical trips?”

And so it was decided.

I attended a meeting about adoptions through Colombia. While we were too young to meet the requirements for a number of countries that adopted to the United States, we met all of the requirements of Colombia’s adoption policy because of how long we had been married. We began paperwork, home studies, background checks and psychological evaluations. We thought of ourselves as “paper pregnant” and celebrated each time we passed a part of the process. After months of meetings, paperwork and social-work visits, we finally had a set of completed paperwork to send to Colombia in application for a child. We considered this our unofficial “ultrasound,” confirming we’d be parents eventually.

Erin and Ted

Erin and Ted shortly after finding out the identity of their son, Lucas

About nine months after we started our adoption process, we attended a weekend fundraiser for our adoption agency and Colombian orphanage. We knew we were getting closer to being matched with a child and that sometimes the agency matched parents to their children at these events. Throughout the weekend, we attended a number of fundraising functions but never got any indication that there was a match. At the end of the final event, a Mass, the founder of the orphanage and the organizer of the agency both spoke about how grateful they were for the weekend’s turnout. At the end, one of them pulled out a manila envelope and read the name of the young boy pictured on it, finishing with, “And my parents are Ted and Erin Sibley.”

We were overjoyed. I called the medical school the next day and extended my vacation for an additional three weeks. We were going to be parents! All the tears, all the sorrow and all the anger were gone. My wife and I were ecstatic! A week later, we flew to Bogota, Colombia, and prepared to meet our first child the next day.

At the orphanage, we waited in the aptly named “green room,” as it is painted bright green. The walls also are covered with hundreds of pictures of children with their families, placed together by that orphanage. In that room, numerous others had met their children for the first time, and now it was our turn. A group of Colombian ladies who worked in the orphanage walked in the room with a gorgeous 3-month-old boy wearing the presentation outfit we had picked out for him. My wife and I stood up and held hands as the women who had taken loving care of our son approached us. They placed him in my arms and said, “Congratulations, Dad. You have a beautiful baby boy.”

Erin and Ted Sibley adopted their first son, Lucas, from Colombia.

New parents Erin and Ted Sibley pose for a photo after meeting their son, Lucas, for the first time.

We were a family. My wife was a mother, and I was a father. Twice, I had felt the blow of cancer in my life — both times unexpectedly. I learned that the life I had wanted, and the life I had planned, was not the life I was meant to live. I had to live with the long-term effects of what happened when I was 13 years old. I couldn’t put cancer in a box and place it on the shelf to look at occasionally. I had to learn to live with it. I was a cancer survivor, husband, medical student, soon-to-be-physician, and now — finally — a dad.

Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.

Cancer delivers another blow

Ted Sibley

Ted Sibley, who enrolled in medical school at the University of Minnesota in 2005, poses for a photo with his wife, Erin. (Photos courtesy of Ted Sibley)

This is part two of a four-part series written by Ted Sibley, MD, a former Children’s cancer patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.

Part 1: Cancer patient reflects on diagnosis — 20 years later

Part 3: Cancer-patient-turned-doctor adds new title: Dad

Part 4: ‘I’m a cancer survivor’

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo.

Ted Sibley, MD

Cancer was now behind me, and my focus shifted to a future without oncologists, CT scans and specialists. For the first time in five years, I looked at myself not as a “cancer kid,” but rather an 18-year-old who had his whole future ahead of him. After graduating high school, I chose to attend Northwestern College (now University of Northwestern – St. Paul), where I planned to major in mathematics education and play football.

I had considered the possibility of becoming a physician. After all, my teen years had provided me an informal understanding of medicine in general. While I was in high school, I had even job shadowed a couple of the oncologists who had treated me. But I came from a family of teachers, and, at that time, I did not want to pursue a career that would require 11 extra years of education.

I enrolled in my fall 2000 coursework and started playing football. At first, I didn’t tell my teammates about my previous cancer diagnosis for fear they’d take pity on me and treat me differently. Eventually, though, I began to share my story when guys asked about the scars on my chest and abdomen from the surgeries I had undergone. To my surprise, nothing changed. I wasn’t considered the cancer survivor, just one of the guys on the team. With no special treatment, I was expected to work hard and earn everything, just like everyone else. The cancer label was gone, and I opened a new chapter in my life.

During my first semester at school, a friend mentioned he knew three girls who were headed to the store for groceries. I needed milk, and didn’t have a vehicle, so I wanted to join them. As my friend introduced me, one of the girls immediately caught my eye — a beautiful blonde with freckles, soft skin and a killer smile. She moved with a poise that was attractive and radiant. I really, really liked her.

Her name was Erin, and she was studying music education with an emphasis in vocal training. She sang with the college choir and wanted to teach elementary music. We went to the store that evening, and shortly thereafter we never left each other’s side. I found myself thinking about her, wanting to be with her, and was ecstatic when I discovered the feelings were mutual. We enjoyed each other’s company and spent hours going on walks and talking to each other. As time went on, I knew that I had to tell her about my past. I knew if we were going to have a long-term relationship that she deserved to know everything about me, and I was unsure about how she was going to react. Previously, all the girls I had dated were from my high school and knew about my cancer history. Erin was the first girl I had to tell the entire story to, and I didn’t know how she’d perceive me. Would she be OK with it? Would she pity me and not tell me? Or, would she decide it was too much to deal with and break off the relationship?

Ted and Erin met during college.

Shortly after meeting, Ted and Erin never left each other’s side.

During one of our talks, I decided I should tell her, partly out of fear that my mom would let it slip. I told her about the surgeries, chemotherapy, hair loss and the year of being unable to eat. I told her about the kidney damage and the high blood pressure, the hearing loss and nerve damage. I told her about my rehabilitation and years of therapy just to be able to walk, write and tie my own shoes. I left out no detail, and after putting it all out on the table, she simply looked at me and said, “OK.” She had no judgment or reservations. Her only question: Would my cancer history affect me having children? I strongly reassured her that, as far as I knew, I had the same odds as everyone else. After all, I was five years’ post-treatment, and no one had mentioned the possibility of infertility. Cancer was in my past, I told her, and it would not be a problem in our future.

Our relationship developed further, and we started talking about the possibility of marriage. We enjoyed discussing our dreams and life together. How many kids would we have? Would they have her freckles or my offset ears? We laughed at the fact that we both have small noses and wondered if this was a gene that we would pass on to our children. Did we want all boys, all girls, or both? I loved talking with her about our future without cancer looming in the background. We were moving forward together, and my cancer history had no place in our life.

I began to struggle with deciding on a career path. I knew that I enjoyed people and excelled in math and science. I thought mathematics education would be a great career fit, but at the end of my freshman year, I wanted something else. During one of our talks, I complained to Erin about being 19 and not knowing what to do with my life. “Why don’t you become a doctor? After all, your life experience is more unique than most others’, and you do well with math and science,” she said.

She made it sound so simple, and somehow I had been missing it. I enjoyed interacting with people, and math and science were my best subjects. Being a medical doctor incorporated all of these passions. The next year, I changed my major to pre-med and decided to transfer to the University of Minnesota to complete a biology degree. I was able to get a job as a pharmacy technician at Children’s. I made the same medications I remembered receiving as a patient just a few years earlier and even made the chemotherapeutic medications that had killed my tumors and saved my life. I had come full circle and now had the focus and drive to turn my cancer history into something good.

Ted and Erin met in college.

Ted and Erin met in college.

After working in the pharmacy for a few years, I realized I missed interacting with people. I completed a summer course to become a nursing assistant and got hired to work in the same oncology unit where I had been a patient.

During that time, I found my passion for medicine. I worked side-by-side with the same doctors and nurses who had taken care of me when I was undergoing treatment. I was able to connect with the kids and spent hours talking with the families about my treatment and time as a patient in the hospital. I was able to relate to the teenagers who were angry about what was happening to them, and I provided hope to families who had recently received a cancer diagnosis. I felt needed and important, and it fueled my desire to become a doctor. I wanted to help others, and I wanted to give something back to the medical establishment that had saved my life.

I was accepted and enrolled at the University of Minnesota Medical School in fall 2005. The next couple of years were extremely challenging, but I had already fought through cancer. I felt empowered to be in medical school. What specialty would I choose? Would I be a pediatrician?  Be a pediatric oncologist? Or, would I choose something entirely different? Did I want to be a surgeon, or maybe a radiologist?

After the first three years of classwork, clinical rotations and internships, I finally chose my specialty: emergency medicine. I loved the rush of the emergency department, the challenges every day brought, as well as the variety of patients I encountered. I treated adults, children, pregnant women and occasionally an oncology patient. I was able to incorporate all of the knowledge I learned in school and help others when they needed it most.

Prior to medical school, Erin and I became engaged, and we married in 2003. She had always wanted to start a family at a young age but understood the challenges of pre-medical studies and medical school itself. We put off having children, and instead she volunteered in our church’s nursery and enjoyed time with her sister’s children. But after two years of medical school, we were both ready to become parents. We decided to try starting a family. If we were successful, the child would be born exactly when I had accrued vacation time and could take a couple of months off with our newborn. Everything was aligning.

After a couple of months, we had no success. I spent extra time after work doing personal research in the library, looking up long-term fertility rates in patients who had had germ cell cancer — the same cancer I had — and received the type of chemotherapy that I had. I remember staying up late at night on our laptop, looking through research articles about late-term complications and the percentage of infertile patients. The numbers were reassuring. Although I realized there may be a chance that we couldn’t have biological children, I figured someone would have told me. I couldn’t remember any conversation with my oncologist or parents about infertility. After another unsuccessful month, I reassured my wife that these things take time, but I would see a urologist to be sure.

subscribe_blogAt my appointment, I remember the urologist sharing statistics about fertility among post-cancer patients. I don’t recall the details of what he said because cancer was in my past. He ordered lab tests, and I was scheduled to come back in two weeks for the results.

The next week, I came home from 30 hours on call delivering babies at the hospital and crashed in my bed. I woke in the afternoon and went to get the mail. Inside was an envelope from the University of Minnesota Department of Urology, and I quickly opened it. I expected a reminder about my follow-up appointment, but instead it was a laboratory data sheet. I saw my name and date of birth at the top, and written below in the graph were big black letters that were circled, “No Sperm Identified.” That was it. There were no other laboratory references and nothing about future appointments. I rubbed my eyes. I was drowsy and delirious from the overnight call shift. But no matter how long I looked at that paper, the words never changed.

I felt numb. Nothing prepared me for this. This wasn’t real. I had beaten cancer, and my future was healthy and strong. I was no longer the “cancer kid.” I was a medical student preparing myself for a career of saving lives and helping others live. How could this be true? And how could it come to me in such an impersonal way? Letters on a lab sheet written by a black Sharpie that turned my life upside down. This was a punch in the gut — just like when I was 13.

I didn’t tell my wife for a week. How could I? All I had was a piece of paper with my name on it and circled letters, “No Sperm Identified.” Maybe it was a mistake. After all, such a diagnosis would not be communicated by mail. “This has to be a mistake,” I kept telling myself.

A week later, I followed up with the urologist, and there had been no mistake. My laboratory specimen failed to reveal a single sperm.

“You are infertile,” the urologist said. “I’m sorry for this diagnosis.”

My stomach churned. He told me about possibilities of fertility treatments, but all I could hear were his initial words over and over again. I was unable to have biological children. My wife and I would never share the joy of having a child who looks just like us. My dreams of going to the hospital with my wife and having friends and family come see our baby were gone. I thanked the urologist and drove home to tell my wife.

She was sitting on the couch, reading a book when I returned home. She looked up and turned her head toward me, “Well, how did it go?”

I couldn’t talk. I couldn’t say anything. I started to speak, and no words came out. All I could do was shake my head, and tears started flowing. “I’m so sorry,” I eventually managed to say, showing her the test results.

We sat on the couch and cried. So many thoughts and emotions went through our minds: anger, sorrow and guilt. Cancer was supposed to be in my past, not affecting anyone else. I could deal with taking daily medications for kidney function and hypertension. I could deal with hearing loss and nerve damage. But never in my life had my cancer so greatly affected someone else. My wife was the innocent bystander, and now the scars of my past had resurfaced to wound us deeply. A piece of our future was gone. And I couldn’t do anything about it.

Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.

Cancer patient reflects on diagnosis — 20 years later

This is part one of a four-part series written by Ted Sibley, a former Children’s patient from Plymouth, Minn., who used to work as a nursing assistant and pharmacy technician at Children’s while attending medical school, about how cancer drastically impacted all aspects of his life from youth to adulthood.

Part 2: Cancer delivers another blow

Part 3: Cancer-patient-turned-doctor adds new title: Dad

Part 4: ‘I’m a cancer survivor’

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD, is a doctor at Truman Medical Centers Emergency Services in Kansas City, Mo. (Photos courtesy of Ted Sibley)

Ted Sibley, MD

There are moments in life that define us, change us and shape who we are. Sometimes you can see these moments coming a mile away. You can brace yourself for the impact, the change it will have on your life, and prepare for its arrival. Other times, such moments come out of nowhere and hit you hard, like a punch in the gut. And, suddenly, you find yourself going down a different path than you thought you would, while struggling to make sense of what just happened. This first happened to me when I was 13. Twenty years later, I still feel the ripple effects.

On May 18, 1995, I was a typical teenage boy finishing seventh grade, trying to navigate both the awkward teenage years and the hallways at school. I played every sport I could and was preoccupied with a newfound attraction to girls — and hoping they didn’t notice the latest pimple to surface overnight. I looked forward to a summer filled with baseball, swimming and family vacations, just two to three weeks away.

Over the past year, I noticed a dull ache in my stomach but never gave it much thought. It wasn’t bothersome until I ate lunch. I waited out the cramps. But I started having more-frequent cramps and stomach aches. I made a daily habit out of drinking Pepto-Bismol before and after school. I didn’t tell anyone about what was happening, until one morning.

I remember waking suddenly, as if I had been struck with a baseball bat to my chest. I couldn’t breathe, and the pain was sharp and intense. It woke me from a dead sleep at about 6 a.m., and it didn’t go away. I stumbled to my parents’ room and tried to tell my dad what was happening.

“I… can’t… breathe…,” I managed to grunt before passing out in the hallway next to my parents’ bedroom.

I remember hearing my mother rush to my side and scream my name and feeling her touch my face. I remember hearing my father call 911. And I remember feeling helpless, lying there in the hallway. Although I never fully lost consciousness, I was not able to keep my eyes open, and I couldn’t move my arms or legs. Slowly and gradually, I came to and was able to sit up in the hallway when the paramedics arrived.

After the paramedics took my vital signs and I was able to stand up and eat breakfast, we determined that maybe it had been a fluke. Maybe I’d eaten bad food the previous night, or maybe I was anxious about the end of the school year. We decided to skip the emergency room and go to our local urgent care to rule out anything serious.

We told the physician my story, and he gave me a pat on the back and told me that it sounded like a virus or maybe that I had been nervous about something, but that we should get a chest X-ray, just in case. After my X-ray, I provided a urine sample. When I returned from the restroom, I passed the examination room and saw the physician talking to my father. The doctor looked very serious, and my dad had tears in his eyes. I thought to myself, “What a strange sight.” My dad rarely cried. I knew they weren’t talking about me because I felt fine.

When I entered the room, the physician started asking me a lot of strange questions. “Have you lost weight? Do you have frequent nosebleeds? Do you sweat a lot at night? Any strange aches or pains?”

I was confused about why he was suddenly asking all these questions. And why did my father look as though he were about to cry again? I kept saying “no,” until he asked me about aches and pains. After I told him about my stomach aches for the past year, he nodded his head and showed me the X-ray. It was my heart, lungs and bones. But there was something else: round balls in my lungs. And I knew from watching medical TV shows, that besides a heart, one should not have round balls in one’s chest. He sat down next to me and told me that he thought I had some type of metastatic cancer in my lungs and that I needed to go to Children’s Hospitals and Clinics of Minnesota.

The next week was a whirlwind of tests, CT scans, lab work while specialists tried to figure out what was happening. My family wanted answers; I emotionally shut down. After hearing I had cancer, I had so many thoughts and feelings. I was angry at the doctor who broke the news. Who was he? Didn’t he know that I felt fine and was really looking forward to summer baseball? I didn’t want to talk to anyone. Why would anyone know what I was going through? And why were they all being nice to me with smiles on their faces? I didn’t know them, and they didn’t know me.

subscribe_blog“Once they do the right test and find out that I don’t have cancer, I can just go back to being who I am,” I thought. I wasn’t the kid who needs chemotherapy and loses his hair. I was the strong one, and everyone else needed to figure that out.

But, truth was, I wasn’t as strong as I thought. After the tests and exploratory surgery, we held a family meeting. I had choriocarcinoma, or germ cell cancer. They believed it somehow had started in my liver and moved to my intestines, kidneys and, finally, my lungs. The largest area was the size of a softball in my liver, which was most likely what I had felt growing inside of me all the previous year. Not only did I have cancer, but I had metastatic cancer. I sat in that bed while the oncologist presented a plan to aggressively treat the tumors. When he was done, he turned to me and asked if I had any questions. After a moment, I turned to him and said, “Yes. Can you leave?”

Soon after, I started chemotherapy. Within the first couple of days, I started to feel weak and tired. I underwent chemotherapy before the anti-nausea drug Zofran existed. Every day was a struggle with constant nausea and vomiting. My tumors secreted the same hCG found in pregnant women — except at an accelerated rate. Every day, I found myself with intense food cravings, followed by horrible nausea and vomiting. I lost significant weight because I was unable to eat. All of my nutrition came through IVs, and even the smell or sight of food made me feel sick. Like other children receiving chemotherapy, my hair fell out. Once a strong and healthy 13-year-old boy, I looked as thin as a rail. My blood counts dropped with every round of chemotherapy, and I was unable to leave my hospital room for weeks and months at a time. Whenever I would get a pass to go home, I ended up with a fever, returning to the same room from which I had just been discharged.

Sibley was diagnosed with cancer in 1995 at age 13.

Sibley was diagnosed with cancer in 1995 at age 13.

Cancer had taken my childhood. All my dreams for the upcoming year quickly vanished before I had time to adjust. I went from a teenager enjoying school, sports and friends to one who was contemplating life and mortality. Was this the last year I would see my family? Was seventh grade the last time I would enjoy my friends at school? Did I just have my last Christmas morning, never to experience the joy of family togetherness again?

But, while my body was breaking down and using every bit of energy it had to fight the cancer and withstand the toxicity of chemotherapy, something else inside was changing. I decided to live what life I had left. I found joy in visits from my family and friends and looked forward to phone calls and letters. I made new friends in the physicians, nurses and techs in the oncology unit. I found myself laughing and even smiling when they were around. Instead of being angry with God about what He had done to me, I found strength, even when my body was too weak to leave the bed.

Throughout that year, my attitude changed about being a “cancer kid” — and so did the treatment results. CT scans showed the tumors were shrinking and the chemotherapy was working. My family and I could talk about future plans and family vacations that we wanted to share together, when just months earlier we avoided discussing such things. We celebrated small victories, cheered when I finished each round of chemotherapy, and found strength in our faith and each other — all while appreciating each day we had been given. At long last, it was time for my final surgery to remove the largest tumor in my liver, and within a short time I was discharged to return home for good.

The next six months were critical, and the medical team that had fought so hard to keep me alive during my treatment fought even harder to make sure there would be no recurrence of the cancer. They ordered CT scans, lab work and imaging studies nearly every week, looking for any evidence that the cancer had found another hold in my body. We discovered that although the chemotherapy had done an excellent job shrinking the tumors, it also had left scars that would not easily be undone. I was left with hearing loss, kidney damage causing high blood pressure, and severe peripheral neuropathy. I had to learn to walk again, how to hold a pencil and write again, and, eventually, how to run again.

I spent more time with physical and occupational therapists relearning body movements and coordination than I had lost from a year of chemotherapy. But, during it all, my goal was clear. I would enjoy the gift of life that I had been given and completely beat cancer. All of it. Not just the surgeries, not just the chemotherapy, not just the daily nausea and vomiting, or even the struggle to walk again. Cancer had almost taken all of it from me, and now I would get my whole life back.

Sibley excelled at football.

Sibley excelled at football in high school.

During the next five years, I eased back to full-time school. I learned to walk and write without special adaptive equipment, and my hair grew in (albeit a little different). I was able to participate in, and succeed at, high school athletics as the starting linebacker on the varsity football team. I also flourished in academics, and I had numerous offers from colleges and universities to continue my education.

I was officially labeled “cancer-free” on May 18, 2000, at the end of my senior year, five years after my cancer diagnosis. I had done it. I had beaten cancer and had my entire life to look forward to. After everything I had faced during my treatments, all that I had endured during my rehabilitation, and all the obstacles that I had overcome, nothing could stand in my way. After all, I had beaten the very thing that had brought me face-to-face with death.

Cancer had thrown its punches, but it failed to knock me out. I was done with cancer and ready to put it completely behind me. That is, until it sucker punched me again, reminding me of that fateful moment when I was 13. Cancer would not leave me as I had left it. When I least expected it, deep wounds returned to the surface.

Ted Sibley, MD, is a doctor in emergency services at Truman Medical Centers in Kansas City, Mo., and a clinical assistant professor for the emergency medicine department and adjunct clinical assistant professor for the master of medical science physician assistant program at the University of Missouri-Kansas City.

5 tips for home and neighborhood safety

Summer is around the corner, we promise. A steady helping of the warm weather isn’t far away.

The season brings neighbors together for all kinds of outdoor activities. While your local barbecue or block party is a great time to reconnect with neighbors and enjoy a potluck, it’s also a great chance to review home and neighborhood safety tips with your children.

Here are five tips to bring up with your kids ahead of summer:

1. Post important personal and contact information in a central place in your home.

  • Include parents’ names, street address, mobile, home and work phone numbers, 911, poison control, fire department, police department, and helpful neighbors.
  • Use a neighborhood party to help children to familiarize themselves with their neighbors and identify whom they can go to for help.

2. Teach your child how and when to call 911.

  • Discuss specifics of what an emergency is and when 911 should be used.
  • Role play different scenarios and make sure kids know what information to give to the 911 operator.
  • For younger kids, discuss the different roles of emergency workers and what they do.

3. Discuss “stranger danger.”

  • Talk with your kids about who is allowed to pick them up from school or activities.
  • Talk to your kids about the importance of walking in pairs.
  • Ensure they always take the same route home from school and do not take shortcuts.

4. Practice proper street safety.

  • Have kids practice looking both ways before stepping into the street, using the crosswalk and obeying the walk-don’t walk signals.
  • Teach kids what different road signs mean, such as a stop sign.
  • Remind children about the importance of biking with a helmet and reflective light.

5. Talk to your children about fire safety.

  • If fire trucks are present at the neighborhood party, use their presence as an opportunity to discuss what to do if there were a fire.
  • Plan and practice escape routes in your home and designate a meeting spot in case you get separated.

It’s never too early to talk to your children and family about ways to stay safe.

Raising kids with the Internet as a co-parent

Every generation faces unique challenges in life, this generation is no exception. The main difference for new parents in 2015 is the Internet — offering a mixed bag of benefits and burdens to the ancient art of parenting. (Pimonova / iStock illustration)

Every generation faces unique challenges in life, this generation is no exception. The main difference for new parents in 2015 is the Internet — offering a mixed bag of benefits and burdens to the ancient art of parenting. (Pimonova / iStock illustration)

Jeri Kayser

While visiting my marvelous niece and her exceptionally marvelous newborn baby, she mentioned that women who have already raised their children don’t know what it’s like to be a parent in today’s world. This struck me as interesting on many different levels.

I remember having that same exact thought after having my first child; it’s only after that baby has grown a bit or you’ve had your second or third child that you can look back on this phase of your parental evolution and see that the change is less about the world and more about you. You have changed. Your priorities, your worries, your decreased expectation that sleep is something you get to choose. The world is now more demanding but infinitely more fascinating and filled with an indescribable love. Plus, you get to learn some awesome multitasking skills!

subscribe_blogSo, is it different to raise a child now?

Every generation faces unique challenges in life, this generation is no exception. I would argue that the main difference for new parents in 2015 is the Internet — offering a mixed bag of benefits and burdens to the ancient art of parenting. It’s a great place to find bargains for the stroller you want or show you how to install the car seat. But it’s equally a never-ending source of unsolicited advice and distorted parent bragging that can make any rock-solid parent feel insecure, questioning if it’s true: “Should I really only feed my child blue foods?”

When I was raising kids and standing in the checkout lane at the grocery store, the magazines would shout from their rack all of the things I could be doing to be a better parent: “How to create the perfect birthday party!” “Fun and easy Halloween costumes you can make at home!” “Teach your child 12 languages before they enter kindergarten.” Every title offering a suggestion came with the subliminal message that failure to follow the advice was evidence that you weren’t up to this whole parenting thing. It’s hard not to feel insecure when you’re so motivated to be perfect for your obviously perfect child while residing in the imperfect package of a human being.

I could step away from the parenting magazines in the checkout line, maybe read up on what alien has married what celebrity, but you can’t really avoid the Internet. Those photos of your friends and relatives in gorgeously orchestrated family bliss are still going to pop up in your feed.

Sigh.

Mining the Internet for truly helpful information that empowers your parenting mojo instead of inviting in trolls who create chaos with your self- esteem requires some thoughtful navigation.  The Internet is great for advice about things that have easily verifiable facts, like “where can I find an indoor playground?” Questions that have long-term consequences like “how do I get my kids to get along with each other?” are best answered by the posse of people closest to you — your friends and family as well as professionals educated in the field of question.

Important parenting advice should be gathered from people important to you, people who are invested in you for the foreseeable future who will be around to be held accountable for their advice. Sift through that advice and take from it what seems right to you. Trust yourself. Yes, others have sailed the parenting seas, but this is your journey and you are the captain. Respecting yourself and recognizing there is no perfect parent smoothes the waters and makes the trip so much more fun!

Jeri Kayser is a child life specialist at Children’s Hospitals and Clinics of Minnesota.

The importance of play — for kids and adults

Hands-on play, where a child uses his or her imagination and ideas to self-discover, creates the best learning environment. (iStock photo / Getty Images)

Jeri Kayser

When people try and remember the name of my profession, child life specialist, they often shorten it to “play lady.” That used to bug me when I was a young professional and ready to solve all of the world’s problems, but now I recognize the compliment. We breathe, drink and eat to stay alive – we play to bring forth a reason for all of that effort. Play is how we learn about our world, practice that knowledge and foster our sense of well-being and personal joy; it’s an honor to promote play in the world of health care, but it’s not without its challenges.

One current challenge is tied to the hot topic in popular culture about the value of gaming devices. Is playing a game on a smartphone when you’re 2 years old considered quality play? Short answer: No. The Academy of Pediatrics recommends no screen time for kids 2 and younger and only one to two hours a day for older children. The core aspect of the definition of “play” is that it’s self-directive. You’re deciding what you’re going to do with whatever you’re interacting with. One of the problems with electronic games is that game designers have done most of that for you.

Your toddler recognizes the status that phone holds, and it works for a bit to keep a child distracted from the fact that he or she is in the hospital or in a long checkout line at the grocery store.

subscribe_blogSo what can we use to help guide our decisions to promote healthy play? A great way to look at this is similar to how we all work to promote healthy choices for our diet. Potato chips are fine for an occasional treat, but we wouldn’t want to eat them all the time. If we did, we’d feel awful. Video games kind of are the junk food of play. The more the play requires from the child, the better the value and healthier the choice.

I notice this in the hospital when I come into a room to meet with a family about what to expect with surgery. People often are busy with an electronic device, but as soon as we start to talk, the interest is there to engage and the devices get turned off. When I bring a toy or some arts and crafts activities, kids always gravitate towards that; they want what they need.

I used to work in a summer daycare program for school-aged kids. We would spend the morning on a field trip and the afternoon at a beach. The director wanted us to provide structured activities for the kids in the afternoon, but we quickly learned that the combination of water, sand and friends led to a more-creative, imaginative and enriched play than anything with which we could have come up. Hands-on play, where a child uses his or her imagination and ideas to self-discover, creates the best learning environment.

I heard an interesting story on public radio on my long commute home. At the electronic show in Austin, Texas, at the South by Southwest conference, the big news at the conference was the “Maker Movement,” stressing the importance of hands-on play to promote understanding of how our world works. They interviewed an inventor, Ayah Bdeir, who created a toy of electronic bits that fit together with magnets, creating circuits. With this process, you can make all kinds of fun things. He explained the value of this explorative play by stating, “We need to remember that we are all makers and touching things with our hands is powerful and inspiring.”

In another century, another scientist noted the same thing. Albert Einstein declared, “Play is the highest form of research.”

Self-directed play offers the healthiest value for our play “diet,” and this extends throughout our lives. We all need to play. As I wrote this, I overheard a conversation between two anesthesiologists talking about how they used play to help them cope with life stressors. One likes his guitar, while the other enjoys making remote-control helicopters.

This important fact, one of the highest forms of self-care, needs to be part of the planning of how we provide health care. Play is important for all age groups, not just those adorable preschoolers. We need to incorporate this in everything we do, for teens, parents and staff.

Late Irish playwright George Bernard Shaw said it best: “We don’t stop playing because we grow old; we grow old because we stop playing.”

Jeri Kayser is a child life specialist at Children’s Hospitals and Clinics of Minnesota.

Former Children’s patient has brain tumor removed, wakes up a new person

Elizabeth Johnson Camozzi

Elizabeth Johnson Camozzi had a tumor removed from her right cerebellum in 1997 when she was 12 years old. (Photos courtesy of Elizabeth Johnson Camozzi)

Elizabeth Johnson Camozzi

I was a shy and awkward girl at 12. Sweet and uncomplaining, worried about what others thought, I was the picture of the normal “tween” identity. I also was quite sick.

Frequently, the routine was migraine, nausea and head to school after vomiting. My parents took me to see several specialists, some touting that I had allergies to chocolate, the sun, the color red. But I continued to be sick, and it seemed a natural part of my life.

There were parts of my daily routines that I believed everyone had. Every night, I would imagine hearing monsters thumping up the stairs to say goodnight to me.

Thump, thump, thump, thump.

Elizabeth with Dr. Mary Beth Dunn in 1997

Elizabeth with Dr. Mary Beth Dunn in 1997

As a musician, I would compose music to that steady thumping. During piano lessons, I would play at the same tempo, quarter note equaling 65 beats per minute. My music was always a very steady sound, driven by the thumping that I assumed everyone heard in their ears. During a math lesson in which we took our heart rates for one minute, I was confused as to why others had to hold their wrists and count what they felt for the time; I could hear my heartbeat plain as day!

After a family trip the winter of my seventh-grade year in 1996, my parents took me to get my eyes checked because I had double vision. As the eye doctor was peeking at my pupils, he paused and called an opthomologist, who referred me to a neurologist. I clearly remember the neurologist saying to her medical students, “You do not want to see this when checking your patients.” She called and scheduled me an MRI for that night, and we went straight over. Immediately after, my parents were called into a side room and quickly invited me inside. I had a pilocytic astrocytoma brain tumor that had taken nearly my entire right cerebellum. I was going to need surgery the next morning.

That night, I prayed for God’s will to be done — a hard prayer for a 12-year-old, but I knew that this was out of my hands. This brain tumor was why I was sick. Would I feel better afterwards? The doctors warned my parents that the chances of me coming out with disabilities would be high. I might lose right-arm and leg function as well as acquire a dropped eye and might not be able to function like a normal 12-year-old. My parents were beside themselves.

Elizabeth Johnson Camozzi in 2014-15

Elizabeth Johnson Camozzi in 2014-15

The next morning, we met Dr. Mary Beth Dunn, who was to be my surgeon, as well as Dr. Joanne Hilden, my oncologist. On Friday night, both neurosurgeon partners, as well as both pediatric head surgical nurses, came in for my surgery on what would not normally be a surgery night. My surgery, considered an emergency, was that afternoon, and it lasted until early morning the next day when I was wheeled into my recovery room in the pediatric ICU.

My mother waited with me until I woke up. My first memory was my mom singing “Hush, Little Baby.” I began to wake as she began the song, “Hush, little baby, don’t say a word. Mama’s going to buy you a mockingbird. If that mockingbird don’t sing…” At this point she paused and I began to remember a comedian that my brothers and I had watched who sang the same song with silly lyrics. Before she could sing any more, I chimed in with my scratchy post-surgery voice, “Mama’s going to tear off its little wing.” Between laughter and tears, my family celebrated my awakening.

I awoke a new person. Not only did I remember my family and silly TV shows, I woke up smelling new smells, seeing colors better, hearing sounds clearer. When Dr. Dunn asked how I was feeling, I responded that everything just seemed better. Without a brain tumor pressing on my ear drum and threatening my life at every heartbeat, I felt lighter and more able to perceive the world around me. I woke up a happier, livelier version of myself, and have not stopped since waking up!

The scar left behind after Elizabeth Johnson Camozzi's surgery is her most beautiful feature, she says.

Elizabeth Johnson Camozzi said the scar left behind after her surgery is one of her most beautiful features.

subscribe_blogMy recovery was quick, and within 10 days I was back at school. Having staples down the back of my head made me a bit of an oddity in middle school, and I was teased relentlessly. Children’s Hospitals and Clinics of Minnesota stepped in with a social worker to explain what I had gone through and the medical background to my teachers (and to explain why I shouldn’t play basketball with an open skull). Our relationship with Dr. Dunn and the staff at Children’s continued to grow and flourish. I spent summers at Camp Mak-A-Dream in Montana among other children who were in the throes of, or recovering from, cancer and leukemia. At any point when the doctors informed us that I could not do something, I would do it — play the piano, balance on a balance beam, memorize sonatas. I did, however, cross skydiving off of my bucket list (scuba diving, considered dangerous, was offered in the safety of camp Mak-A-Dream!).

Now 30, I owe my life to Drs. Dunn and Hilden and the staff at Children’s. I feel as if a part of me did not begin until I went into the operating room. When I see Dr. Dunn to this day (18 years later!), she still looks at my scar and smiles. A perfect line down the part line in back of my head, my scar is one of my most beautiful features; it tells a story of survival and hope.

Sleep tips from Children’s Sleep Center

Children's Sleep Center in St. Paul specializes in identifying and treating the full gamut of sleep challenges. (iStock Photo)

Children’s Sleep Center in St. Paul specializes in identifying and treating the full gamut of sleep challenges. (iStock Photo)

subscribe_blogKaren Johnson, APRN

Parents know good sleep is essential for healthy growth and functioning. Parents also know that good sleep can be hard to come by.

Families seek out the Children’s Sleep Center for our experience in treating rare and common sleep disorders in infants, children and adolescents. At Children’s Hospitals and Clinics of Minnesota, we specialize in identifying and treating the full gamut of sleep challenges, ranging from difficulties falling asleep, staying asleep, or with breathing during sleep, to difficulties waking up and staying awake.



SLEEP TIPS FOR ALL CHILDREN

Random bedtimes breed bad behaviors in kids

Many parents have learned the hard way that late bedtimes make for cranky kids the next day. In one study, children who went to bed after 9 p.m. were rated as having more behavior problems. During the day, later bedtimes affected the child’s school performance. Irregular bedtimes cause worse behaviors than short amounts of sleep. Behavioral problems improve when children have regular bedtimes.1

Sleep tips for a better bedtime routine

1. The bedtime routine should take place in the child’s bedroom where it’s quiet — a great time to read two to three books to your child, developing a love for reading, too.

2. Your child will be calmed when the routine is done in the same order each night.

3. Younger children may benefit from a visual schedule (pictures, words, or both) to remind them of the steps.

4. Determine which events are calming and which are stimulating. Calming events are required for bedtime. For example, if bathing is stimulating instead of relaxing, move the bath time earlier in the evening or to the morning.

Kids and electronics

Screen time can impact the quantity and quality of sleep. The American Association of Pediatrics recommends no more than one to two hours of screen time a day for children two years and older. The light from these screens suppresses melatonin, a hormone in the brain that signals sleep. Due to the usage of multiple electronic distractions (cellphones, computers, tablets) for tweeting, texting, social networking and entertainment, kids’ evenings are “lit up.” The light from these devices is keeping many kids awake long into the night, creating sleep deprivation. Losing one hour of sleep at night can negatively affect a child’s academic performance at school.

Tips for improving sleep

1. Implement an electronic curfew at least one hour before bedtime.

2. Remove all electronic devices from the bedroom.

3. Adjust your child’s schedule to accommodate for homework to be completed earlier in the evening when homework requires using electronic devices.

4. Consider doing homework in the morning, as the light from these devices helps your child wake easier.3,4

SLEEP TIPS FOR PATIENTS WITH OBSTRUCTIVE SLEEP APNEA

Can I get sick from my CPAP mask?

Unwashed CPAP/BiPAP masks may have an odor and harbor germs. Because you breathe through the mask for several hours each night — particularly if you use a heated humidifier in conjunction with the CPAP machine — you create a warm, moist environment inside your mask. Fungi, bacteria and viruses can thrive in this environment. These infectious agents then have direct access to your airway and can make you sick.

  • Wipe the CPAP mask clean each day with a mild detergent and allow it to air dry.
  • If you have any questions, call your equipment vendor or the Children’s Sleep Center for help.

Important things to know about CPAP/BiPAP and sleep

1. You should start to feel better during the day soon after you consistently start using your CPAP/BiPAP at night.

2. CPAP/BiPAP improves your health and well-being in many ways.

3. Not everyone finds CPAP/BiPAP easy, but there are things that you can do to make it easier. Ask your sleep specialist for ideas.

4. To succeed with CPAP, you need to be patient and stick with it. Since it generally will make you feel better the next day, taking a night off from using it is not a good idea.

5. It is not unusual to find your mask is off when you wake at night. What matters is being aware and putting the mask back on again when you notice it is off.

Treating sleep apnea in kids improves behavior, quality of life

Kids with untreated obstructive sleep apnea often are tired during the day, have trouble paying attention and other behavioral problems; these children are not getting enough quality sleep at night.

Obstructive sleep apnea (OSA) is marked by pauses in breathing while asleep. These pauses can occur through the night and disrupt sleep. Positive airway pressure machines help keep the airway open. The main message is that this treatment — although it may be difficult to tolerate — can result in a significant improvement in the child’s behavior and quality of life. One of the issues is that children may not want to wear the bulky mask while they sleep, but the study shows that even three hours a night is enough to make a big difference by improving attention, behavior, sleepiness and quality of life.5

PEDIATRIC PARASOMNIAS

Pediatric parasomnia refers to movement or experiences that take place during sleep as a child transitions from sleep to wake phases. A few common parasomnias include sleepwalking, sleep terrors and confusional arousals.

Parsomnias can be common in families and may be triggered by other sleep disorders, such as OSA and restless leg syndrome (RLS). Other triggers include certain medications, sleep deprivation, irregular sleep schedules, fever, sleeping in unfamiliar places, stress and separation anxiety.6

Sleep terrors occur during the first hours after falling asleep. The child wakes abruptly from sleep with loud screams, is agitated and frightened. The child is unresponsive to a parent’s efforts to calm and does not recall the event in the morning. It’s best to stand by during the event, observe and maintain the child’s safety. The terror is not traumatic for the child, only for the observer.

Nightmares occur at the last half of the night during REM sleep. They are disturbing dreams that wake the child, usually creating fears and anxiety. The child can recall the nightmare in the morning.

Sleepwalking occurs in about 15 percent of children, peaking between 8-12 years of age. Some may exhibit inappropriate behaviors at night, even urinating in strange places. Children have injured themselves by unconsciously carrying out dangerous behaviors such as leaving the house at night. Safety is the biggest concern in managing sleepwalking events. Second-floor bedroom windows should be locked and alarms placed on outside doors to alert parent if the child attempts to leave the home during the night.

Confused arousals may occur at any time during sleep. The child may sit up in bed, cry, whimper, moan and seem agitated and confused. Usually they do not respond to your interventions to comfort.

Home management

  • Maintain a regular sleep and wake schedule seven days a week. Getting the proper amount of sleep to feel well-rested will reduce the triggers for an event.
  • Precautions for safety during sleepwalking events need to be addressed. Alarms on doors and windows are advised.
  • Night terrors and confused arousals do not require the child to be comforted, as this will intensify the event. Parent should stand by to observe and maintain child’s safety.
  • Children will outgrow parasomnias as they get older.
  • If your child is having regular parasomnia events, an evaluation by your sleep provider may be required.

Karen Johnson, APRN, is a certified nurse practitioner at the Children’s Sleep Center in St. Paul. Get more information about the Children’s Sleep Center.

Resources
1. www.npr.org, 2003
2. Sleep for teenagers; www.nytimes.com, (2014).
3. Treating sleep apnea in kids improves behavior, quality of life; www.webmd.com, (2012).
4. Limiting screen time improves sleep, academics, behaviors, study finds; www.sciencedaily.com, (2014).
5. American Journal of Respiratory and Critical Care Medicine, 2012
6. Suresh Kotogal MD (2014). Sleepwalking and other parasomnias in children.