Getting home safely

After finishing up clinic on a Monday evening at about 5:30, I headed over to the pharmacy to pick up a prescription. As I passed through the drop-off circle on the way to the Physician’s Pavilion, I noted a new family wrestling with their car safety seat – the father pulling straps while the mother sat in the back with their newborn. I could see the frustration on both of their faces, exhausted from the ordeal of birth and the hectic post-partum period. I thought about stopping to help, but I needed to get home to cook dinner for my family, so I walked on.

Twenty minutes later, I left the pharmacy to walk back to my car. As I approached the circle, I saw the new family was still there, still wrestling with their car safety seat, and clearly at the end of their rope. I stopped.

I introduced myself as a pediatrician and certified child passenger safety technician and offered to help. I spent the next 25 minutes teaching them to correctly use their car safety seat. We removed an insert in the seat that pushed the baby’s head too far forward, and lowered the harness straps to properly fit the baby in the seat. We tightened the harness straps to ensure a correctly snug fit. We adjusted the angle of the seat’s recline so the baby’s head would not flop forward, occluding his airway. We pushed the car seat into the cushion of the vehicle seat and tightened the lower anchor to ensure an appropriately tight installation. We rolled up receiving blankets to correctly position the infant’s head in the seat.

When we were finished, everything was perfect – and the parents could replicate everything we had done together. They shook my hand and graciously thanked me. My family ended up eating dinner pretty late that night, but that family left our hospital with their son protected as safely as possible.

During the 40-plus hours of that infant’s stay at OHSU, he had his vital signs (including his temperature) taken at least every eight hours. As a general pediatrician for more than 20 years, I cannot remember a single case where the temperature of a well newborn, with no risk factors for infection or other previously identified concerns, was abnormal. I know it happens, but I have never experienced it. Some of the reasoning behind taking an infant’s temperature at least once every nursing shift has to do with hospital policies and protocols, but nurses and medical assistants have told me it’s to ensure that the babies are “safe.”

Every single infant who is traveling home in a private vehicle is required by law to ride in an approved car safety seat. The newborn care team routinely asks families if they have a car safety seat. If families don’t have one, they’re instructed to get one, as a requirement for discharge. The pediatric team hands each family a sheet of paper with some basics of newborn care and safety, including the guidance to use their car safety seat facing the rear of the vehicle until the child is at least 2 years old. This is the generally the extent of the guidance and assistance that families get regarding safe travel.

According to data from the U.S. Centers for Disease Control and Prevention, 134 infants younger than 1 year of age died in motor vehicle crashes in the U.S. in 2013. Approximately 500 more infants were hospitalized and more than 8,000 were treated in emergency departments for serious injuries sustained in crashes. Twenty-three percent of the babies who died were unrestrained at the time of their death; 77 percent were in a car safety seat. Between ages 1 and 15, motor vehicle crashes remain by far the leading cause of death for children.

Anyone who’s ever installed a car safety seat will tell you it’s generally neither fun nor easy. Data from the National Highway Traffic Safety Administration has shown that approximately 3 out of 4 car safety seats are used incorrectly, with misuse errors that are likely to significantly increase the risk of injury to the child passengers.

My own experience as a CPS (child passenger safety) technician who has worked with more than 8,000 families since 1997 tells me that those misuse statistics are likely an underestimation of the problem. In 2014, with help from colleagues at the OHSU Doernbecher Tom Sargent Safety Center, we studied how families with well newborns at OHSU used their car safety seats. What we found was truly disturbing: Out of 292 families with well newborns, 93 percent made serious errors in how the infants were harnessed in their seat, and in how the seat was installed in their vehicle. The average family committed more than five serious mistakes.

How many families suffer the experience I encountered on that Monday evening? What might have occurred had I not stopped? At best, the child would have gone home at an increased risk for injury in the event of a crash. At worst, the exasperated parents may have given up and carried the infant in their arms. While this may seem difficult to believe, a full 10 percent of the infants injured or killed in crashes in 2013 were completely unrestrained – it happens.

The Tom Sargent Safety Center at OHSU Doernbecher currently employs a dedicated staff of certified CPS technicians. We can provide inpatient consultation for children who have suffered injuries, who have special transportation needs or who are in need of a car safety seat, collaborating as part of the care team to ensure a safe transition home.

We staff a community car seat fitting station at OHSU Doernbecher, generously funded by Kohl’s Cares, by appointment only, and work with more than 2,000 families in the Portland area each year. The demand for this service is so great that we routinely have a 3-week wait list. The Safety Center provides guidance and education to thousands of families each year and sells discounted home safety equipment (including bike helmets, stair gates, window guards, smoke detectors and cabinet locks) to many thousands more.

Here’s the thing: As hard as we work at the Safety Center and as much as we do, we simply do not have staff or resources to provide assistance to families with newborns. We know that each and every day, approximately 6-7 newborn babies will leave OHSU, and that almost all of them will be unsafe. We know that families will struggle, and that infants are being endangered, and we cannot unknow that. We also know that we need to change this.

A world-class health system should ask first and foremost “What is best for patients?”, and endeavor to do just that. So while you are reading this, you can be certain that every single infant born at OHSU today will have their temperatures carefully measured each nursing shift for the remote possibility of detecting an unsuspected fever. Perhaps an abnormal reading will lead to an intervention that will protect the baby.

You can also be certain that virtually every infant born today will travel home in a car safety seat that has been critically misused. You can be certain that families will try to do the best thing for their baby, as did the lovely family on that Monday evening. You can be certain that we will have very little to offer them.

I have a problem with that, and it’s time for us to change it. I have no problem with eating dinner late; I will be late forever if it means doing what’s best for kids. Is it best for kids to ignore their needs, to pretend we do not know what we know about how to best protect them? We owe it to our patients – to our community – to provide the best possible care. That is, indeed, what a world-class health system should do. Should that not include ensuring that each and every infant can get home safely?

Ben Hoffman, M.D.
Medical Director, Tom Sargent Children’s Safety Center
Professor of Pediatrics
OHSU Doernbecher Children’s Hospital

Fall safety tips from OHSU Doernbecher and the Oregon Poison Center

As colorful leaves fall from the trees and the air turns cool and crisp, it’s important to remember that the fall season can pose some safety risks. We asked the Oregon Poison Center at Oregon Health & Science University and the Doernbecher Tom Sargent Children’s Safety Center for tips to keep you and your loved ones safe this autumn.

Have a safe Halloween

  • DCH HalloweenTalk to your child about the difference between reality and make-believe. The scarier aspects of Halloween can frighten preschool-aged children.
  • When choosing or making a costume, look for fire-resistant material and bright colors. If you choose a dark color, add reflective tape so drivers can see your trick-or-treater. Be sure that the costume is not a tripping hazard.
  • Avoid sharp objects or accessories and opt for make-up or face paint instead of a mask, if possible. To help eliminate skin irritation, choose face paint with the following labels: “made with U.S.-approved colored additives,” “laboratory tested,” “non-toxic” or “meets federal standards for cosmetics.”
  • While cosmetic, decorative or colored contact lenses may be the perfect complement to a costume, the OHSU Elks Children’s Eye Clinic recommends against them due to safety concerns including blurred vision and injury to the eyes.
  • Be sure children have adult supervision while trick-or-treating – and carry a flashlight. If older children are going with a group, review safety rules, including street safety, with them in advance. Know the route they plan to take, set a curfew and provide a cell phone, if necessary. Verify that children know their last name and phone number in case they get separated from their chaperone; consider attaching this information to the child’s costume.
  • Colorful glow sticks are becoming increasingly popular. Overall, these products are safer than candles, but they are easily broken. While considered nontoxic, the contents may cause irritation or nausea if they come in contact with skin or eyes.
  • Use battery-powered candles rather than candles with a real flame. If you do use a real candle in a jack-o-lantern, place the pumpkin a safe distance away from where trick-or-treaters will be walking or standing. Be sure your home is well lit for trick-or-treaters, and clear steps and lawns of tripping hazards.
  • Instruct children not to eat any treats until an adult has checked them. With the recent legalization of recreational marijuana in Oregon, these rules are even more important as some marijuana edibles may look like everyday candy and holiday treats. Dispose of any candy that has loose or open wrappers. Wash and cut up all fruit to inspect it before eating.
  • Don’t forget your pets! Remember that some treats — especially chocolate — can be poisonous to our furry or feathered friends.

Prevent carbon monoxide poisoning in cold weather

  • Be aware of increased exposure to carbon monoxide, a colorless, odorless and tasteless gas that can be fatal if inhaled in large quantities. The risk of carbon monoxide poisoning increases when the weather turns cold as heating devices are used and closed windows decrease fresh air circulation.
  • Know what can cause increased exposure, such as a leaking car muffler, improperly functioning home heating furnaces, woodstoves used in poorly ventilated rooms or burning charcoal indoors.
  • Ensure proper ventilation in your home or vehicle, and get fresh air immediately if symptoms such as headache, nausea, sleepiness or vomiting occur.
  • Install carbon monoxide detectors on every level of your home; use detectors that are approved by Underwriters Laboratories (these products will have the statement ‘UL-approved’ on the packaging).
  • Check heating appliances annually and before you first use them in cold weather.

Keep antifreeze and windshield washing fluid away from children and pets.

  • Prevent exposure to antifreeze products and windshield-washing fluid, which contain toxic chemicals that can cause severe illness or blindness if ingested; large amounts can be fatal.
  • Store these and other car care products in locked cabinets and never store them in old food containers.
  • Rinse empty containers thoroughly and recap before discarding.

Plan for fun and safe holiday celebrations

  • Take a few minutes to poison-proof your home in anticipation of visiting holiday guests and the altered household routine that inevitably accompanies the holiday season.
  • Handle decorations and lights with care.
  • Keep poisonous plants, décor and gifts away from children and pets; lock medicines away and out of reach.
  • Be sure that houseguests store medication safely away from children.
  • Traveling for the holidays? Have your child’s car seat checked. Call the Doernbecher Tom Sargent Children’s Safety Center at OHSU for more information: 503 494-3735.
  • Post the Oregon Poison Center’s number (1 800-222-1222) by home phones and save to cell phones.

This post originally appeared on the OHSU News and Events site

Monsters under the bed: Banishing bedtime fears

KC FB Profile logoThe Dr. Super Sleep Series is written in collaboration with KinderCare. KinderCare believes that early childhood education creates brighter futures. They are the largest provider of early childhood education in the nation and they are passionate about creating a world of learning, joy and adventure for more than 169,000 children every day. For more parenting resources, crafts, learning activities and family fun, visit their blog.

While it’s wonderful that children’s imaginations can make the ordinary magical (that cardboard box is definitely a rocket ship!), imagination can sometimes make the ordinary scary for a small child – think about that dark closet, which, come bedtime, is suddenly full of monsters.

Monsters under the bed“Nighttime fears are very common between ages 3 and 6 and often appear as children develop the ability to imagine,” says Dr. Elizabeth Super, a pediatrician and children’s sleep specialist with the Pediatric Sleep Medicine program here at OHSU Doernbecher Children’s Hospital.

Bedtime fears (as opposed to nightmares or bad dreams) arise during waking hours, as your child prepares to fall asleep. “It might feel like a stalling tactic – and sometimes it can be,” Dr. Super says. “Regardless, help your child address her fears by being really validating and reassuring, even as you stick to your sleep routine. Keeping on track will make her more confident and comfortable in the long run.”

Facing bedtime fears at your house? Try Dr. Super’s practical approaches to help put them to rest:

Scared of the dark? Turn on just enough light to allow your child to fall asleep. While a lot of light can inhibit a good night’s sleep, a bit of light will help your child move past her fears and fall asleep on her own – after all, there’s no good sleep if she can’t get to sleep. A special night light – one she gets to choose and then turn on herself – could help keep her fears at bay.

Monsters under the bed (or somewhere else)? Don’t dismiss his fears or reason them away, instead encourage your child to get in on the solution. For example, whip up a batch of monster repellent: Mix a little lavender oil (it has a calming aroma) with water and put the potion in a clean spray bottle. Have your little hero squirt it under the bed, in the closet, etc. and then check together to make sure his room is all clear. He’ll feel more in control – and his room will smell lovely.

Spooked by the TV? If your child is suddenly scared to get into bed, consider what she’s been watching. Did she see something that spooked her? Sometimes what’s frightening to a child isn’t immediately apparent to an adult (like those flying monkeys from The Wizard of Oz…), so ask her. If you stop watching the scary show, or reading the spooky book, it might help her settle down. And if the movie made a lasting impression? Remind her that it’s pretend and together, imagine a different ending to the story. In your version, maybe those flying monkeys are busy delivering gumballs to all their monkey friends.

Worried about something? The world is a pretty big, confusing place and growing up is a lot of work. Setting aside a regular 5 to 10 minutes of “worry time” every day can be really helpful for older children, starting around age 5. At this time he is likely able to express his feelings more clearly, so talking to him about whatever is bothering him can help ease his fears. Just pick a time to chat that’s not immediately before bed.

Remember that this too will pass! Most children will grow past their bedtime fears with your support and reassurance.

Other posts in the Dr. Super sleep series:
What is your baby’s ‘sleep temperament?’
Six strategies to improve your baby’s sleep skills
Battle bad dreams, night terrors and things that go ‘bump’ in the dark
The real scoop on teething and sleep

Dr. Elizabeth SuperElizabeth Super, M.D.
Assistant Professor of Pediatrics
Doernbecher Pediatric Sleep Medicine Program
OHSU Doernbecher Children’s Hospital

 

 

Behind the scenes: Doernbecher Freestyle XII

Being nominated and selected to work on the Doernbecher Freestyle collection is a once-in-a-lifetime experience – both for our patient-designers and for the Nike employees chosen to be involved in the program. We sat down with some of folks who helped make this year’s collection magic happen to see what their experience has been like thus far.

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Interviewees and patient designers

  • Andrew Winfield, John’s Nike team
  • China Hamilton, Jacob’s Nike team
  • Hingyi Khong, Lizzy’s Nike team
  • Jonathan Johnsongriffin, Kian’s Nike team
  • Megan Collins, Emory’s Nike team

On being selected:

“I was ecstatic [when I found out I had been nominated]. It’s probably been one of the best experiences I’ve had so far. I’m from the area, so I’m familiar with Doernbecher and I was really excited to be able to work with a program that benefits the hospital. What they do is amazing – this is the highlight of my year.”
–Megan Collins

“I had heard about the program beforehand, and I was so excited!”
–Jonathan Johnsongriffin

On working with the patient-designers:

“For this project, it was all about John and what he wanted. He already had his ideas – he was excited and knew what he liked, so it was easy for us as a team to grab material and get this whole project together. His message is ‘stomping out Crohn’s Disease,’ so that was a big part of the messaging behind the shoe. When we showed him the initial sample, he had a big smile on his face – that was really gratifying for me and for our team. John has been a real trouper; he has a quiet strength to him and I learned a lot about him from how he dealt with this whole process.”
–Andrew Winfield

“It’s been amazing working with Lizzy. I guess the word I would use to describe Lizzy is ‘particular.’ She’s confident, very sure of herself – she knows who she is and what she likes. It’s been great to see self confidence in someone so young. I was lucky enough to go out to The Dalles to hang out and watch Lizzy’s dance recital, where I saw her perform with girls a year older who practice three times as much as her. She was holding her own – she’s obviously a real talent! Seeing the context of her inspiration was really helpful for this project.”
–Hingyi Khong

“Emory was great! When we were briefed on her design inspiration, we knew we’d never have a chance to do something like that again. She’s such a sweetheart and she has such a fire inside of her. She’s just amazing. Seeing that smile – that makes it all worth it.”
–Megan Collins

“Jacob is such an inspiring kid; I felt very fortunate to be paired with him. He has really amazing taste and sense of style – it was a dream to work with him. He kept asking our team, “Why are you guys so awesome?” Giving us the motivational speech! He’s the sweetest kid, and he’s super smart. He has a very bright future in front of him.”
–China Hamilton

“Kian kept us on our toes! He really loves shoes, and he picks up on every little detail. Every time I come see him, I make sure I wear something cool – he’s like a little sneaker head. He knows so much about shoes and was naturally curious about the design process – his curiosity made me more excited to work on the project. We were able to bring his story to the shoe, and getting that story out of him was really interesting. Throughout the process you can see how hard he’s had to fight. Hopefully this project and this shoe will inspire people to win the day, every day.”
–Jonathan Johnsongriffin

Why the Doernbecher Freestyle program is so special:

“Overall it’s a project we can really connect to that’s different from our everyday tasks. It’s kind of a different feeling than just creating a product – you create connections with the family. The program is something you can really get behind, something you’re proud of (in an entirely different way) when it’s finished.”
–Hingyi Khong

Learn more about our incredible Doernbecher Freestyle patient-designers here, and read a blog post by Nike graphic designer Carson Brown, who worked with Isaiah, here. We hope we’ll see you at this year’s collection reveal and auction on October 23!

Isaiah’s Doernbecher story

Last year, Isaiah’s Neumayer-Grubb’s family discovered that he had a brain tumor that would need to be surgically removed. We sat down with his mom, Melissa, to learn more about Isaiah and his Doernbecher story.

How would you describe Isaiah?
He’s a charismatic little guy who makes friends wherever he goes. He shines at everything he does and loves to stay active. Isaiah walks into a room and you can feel his presence – he has this wild sense of humor that makes you want to be around him all the time, just to see what he’ll say next. He fills your soul with happiness.

When did you know something was wrong?
Isaiah was getting headaches that were becoming more frequent – about three a week. His primary care provider referred him to a neurologist, who thought it was just childhood migraines and didn’t seem super concerned since Isaiah was otherwise very healthy and still taking part in sports, in dance and in school.

Just in case, though, the neurologist recommended an MRI. We went in on a Friday and were told Isaiah would be in and out in 45 minutes. He was back there for about two hours. We knew that day that something was wrong, but didn’t hear back until the following Monday that he had a lesion on his brain.

I remember trying to write down the word ‘lesion’ on a piece of paper, but in that moment I couldn’t spell it – I just couldn’t wrap my head around it.

The space in between getting this news and going to the hospital was the scariest, really. We were Googling “lesion on brain” and getting search results ranging from “it’s nothing” to “he could die.” That was the last time I Googled anything.

Meeting Dr. Nate Selden
Our neurologist referred us to Dr. Selden, whom he called the “best of the best.” My husband and I were super nervous – you don’t really know what to expect when you’re talking to a neurosurgeon. But the moment we walked into Dr. Selden’s office, we felt like we already knew him. It wasn’t what I expected at all – we felt instant comfort and instant safety. He really is incredible.

At this first meeting, he told us he believed Isaiah’s tumor wasn’t cancerous and didn’t want to jump into surgery right away. He said he wanted to take it to the tumor board so eight other experts could weigh in.

In the meantime, a sleep-deprived EEG showed Isaiah had been having absent action seizures. At the time, it just seemed like Isaiah would space out and ignore us for 30 seconds to a minute. Once we found out, Isaiah started anti-seizure meds and we made some life changes almost immediately. We went from having a perfectly normal 7-year-old to having a child we had to keep an eye on at all times. He couldn’t ride a bike by himself or even get in the bath by himself. It was very, very surreal.

A week later, we got a call from Dr. Selden’s office that the tumor board was recommending surgery – the tumor was large enough that he and his team needed to determine what it was. I felt like someone was kicking me in the stomach. He explained all of the factors that went into the recommendation and the associated risks and benefits.

Dr. Selden told us he’d be putting together the best team possible for Isaiah’s surgery. They would practice ahead of time on a 3-D model constructed using scans from his MRI.

Brain surgery isn’t without risks – we had to consider possible impacts to Isaiah’s speech and movement of his legs, and we also had to consider the possibility of paralysis and death. We didn’t know what our son’s future would look like with surgery, but we didn’t know what it would look like without it, either. The hardest part for us was that it was ultimately our decision.

The one thing Dr. Selden said that still stands out to me was, “I believe I can do this surgery. I know I can.” I just remember the way his eyes looked when he said that – it was genuine, not cocky. I’m a pretty intuitive person and I had no doubt that he could do it.

We decided to go ahead with the surgery.

Waiting
We scheduled the surgery for October 27, which meant we had about a month to wait. Our family took some time off work to go to the beach for five days, and I decided we were going to live life to the fullest for that month so that if I lost my son, he would go with peace and love, not with fear or uncertainty. We had no control over the situation, so we spent those weeks doing all of the things we could.

Jameson, Thomas and Isaiah. Isaiah is a huge Oregon Ducks fan, so we got tickets to a UO game. He always said he was going to play ball with Thomas Tyner someday, not realizing the age difference between him and Thomas. After a family friend told Thomas about Isaiah, he arranged to meet us before the game. He gave Isaiah a pair of his cleats and introduced him to Marcus Mariota. Thomas is truly a fantastic kid – he’s exactly what I want my boys to be like. I want to give his mom a hug and tell her she did a great job!

Our friends got together and planned a Halloween party for Isaiah since he would be missing it that year. More than 100 people came out to celebrate one of Isaiah’s favorite holidays with us.

People were amazing – AMAZING. I can’t put into words how much gratitude and humbleness I feel.

Surgery
Batman was a way of escaping for Isaiah – if Batman could overcome anything, he could, too. On October 27, the day of Isaiah’s surgery, students and staff at his school all wore Batman gear, and the kids in his class wore black and yellow bracelets with Isaiah’s name on it. A lot of our friends and family flew in for the surgery, and they were all wearing Batman shirts. Isaiah was wearing his Batman shirt before he went into surgery. There were probably 30 people waiting with us at the hospital. It was absolutely amazing.Isaiah Batman family

I didn’t realize how terrified I was until they called to say the surgery was complete. I grabbed my purse and backpack to head upstairs and I cried in a way that I’d never felt before – I didn’t know if my son could talk or walk, but I knew he was alive. It was almost like a release of all of this pain and fear.

Upstairs, Dr. Selden came out and said the surgery went great and his team was able to remove more of the mass than they’d anticipated. We were crying and hugging him – even my husband, who’s not a hugger!

Isaiah after surgery 2We knew the first 12 hours would be touch and go with a lot of neuro checks. Isaiah woke up yelling, so we knew that, despite being really scared, he had the ability to talk.

As a mother, I can see that our time at Doernbecher was incredible. Isaiah just remembers being very angry and confused – he went into surgery feeling fine but no matter how much information we gave him prior to it, he wasn’t prepared for how he would feel afterward. He couldn’t fully grasp it – none of us could.

Isaiah didn’t want to eat or walk. Dr. Selden said if he did, he could go home. He walked around that ICU unit, and people were clapping and cheering. He was still so mad! I’m sure if he knew any bad words, he would have been saying them. Dr. Selden released him to go home that same day, just two days after his surgery.

A brother’s love
Isaiah and Jameson sleeping copyWe wanted to prepare our younger son, Jameson, for Isaiah’s arrival – he was 3 at the time. Isaiah had two swollen, black eyes and the cut on his head, plus he just generally looked pretty frail. My brother Tommy told Jameson that the doctors had to fix Isaiah up, and he would be fine – Jameson pushed himself out of Tommy’s arms and followed us back. He jumped up on the bed to lie next to Isaiah. My two crazy, hyper, ridiculously energetic boys were lying there together, holding hands and not saying a word. It was amazing. I could see the color come back into Isaiah’s face.

How do you explain something like this to a 7 year old?
We always made a point to tell Isaiah the facts – what we knew for certain – about what was happening. My husband and I would try to process the information we were receiving before having a conversation with him. We wanted to first handle our emotions so we could focus on helping him handle his. At the initial appointment with Dr. Selden, Isaiah just knew we were there to get his headaches checked out.

There’s no sugarcoating with Isaiah – downplaying the news actually makes him nervous. He’s very intuitive, so you have to be straightforward with him. Dr. Selden picked up on that immediately. There was also talk of Isaiah getting an Xbox if he did indeed need to get surgery, which was looking unlikely at our initial appointment.

After finding out the tumor board had recommended surgery, we had another appointment with Dr. Selden. We sent Isaiah out of the room to ask the hard questions (this was something we learned early on: Always bring another adult to appointments with you so your child can leave the room when necessary).

Once we had made the decision to go ahead with the surgery, we sat Isaiah down and told him. Isaiah CHAPWe compared the lesion to a freckle on Isaiah’s brain, and said we’d heard that freckle was what gave Batman his superheroes. Isaiah had a lot of questions – Is Dr. Selden going to have to cut open my head? How big will it be? Will they shave my head? At this point, it dawned on him that he just might be getting that Xbox!

He seemed completely fine with the surgery at first, but four or five days later, the fear kicked in. We spent the next few weeks answering his questions (and writing down the ones whose answers we didn’t know so we could find out) and trying our hardest to be calm.

A lot of waiting areas at Doernbecher have arts and crafts areas, which was a lifesaver on so many different occasions. In fact, he and my 19-year-old daughter made a necklace together right before Isaiah went into his surgery.

What other advice do you have for other families facing serious health problems?
That’s a tough one, because I get to say this being on the other side. We’re very lucky. I think it changes you – you learn how to live in the moment. I faced the possibility that I could lose my kid, and I made a conscious decision not to think about that every day (though that’s not to say it didn’t go through my mind every day). You’re thinking about your child’s mortality and you’re watching him face it, too. As a parent, you think a lot about how you would want your child’s last moments to be if these are indeed to be his last moments.

Another piece of advice: No Google. That’s a big one! Google is scary.

Today
At this point, we’re not planning on another surgery. We continue to monitor his seizures and our goal is to get him off of those meds at some point.

Freestyle XII IsaiahIsaiah is really comfortable talking about his experience. He went back to school a few weeks after surgery and answered everyone’s questions, even taking off his beanie so they could see his scar. One time someone unknowingly told him they thought he had something on his ear – he just answered, “Nope. I had brain surgery!”

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Learn more about Isaiah and the rest of this year’s incredible Doernbecher Freestyle patient-designers here, and read a blog post by one of the Nike graphic designers who worked with Isaiah here. We hope we’ll see you at this year’s collection reveal and auction on October 23!

A letter from one ‘well child’ to another

A few weeks ago, pediatric resident Dr. Antwon Chavis wrote a blog post called “11 things your ‘well child’ wants you to know.” This week, he’s back with a letter for all the other ‘well children’ out there. 

Well Child Photo for TW

Hey there,

My name is Antwon. I heard you’re the sibling to a child with special needs, like I am. I wanted to write you a letter explaining why I think you’re amazing, and how lucky I think you are. I know your life seems harder than a lot of people that you know, but to be honest, you’ll be better off because of it.

I know you deal with more than kids your age should. Your parents spend a lot of time caring for your sibling and taking care of regular doctors appointments, hospital stays and phone calls. You see the love and patience they have when taking care of him or her. They never stop trying to get what your sibling needs, and they lose sleep so you and your sibling are well cared for. You’re going to learn so much from them! Believe it or not, your parents are teaching you how to be a good person and an amazing parent.

I know that this is hard to take into consideration, as you struggle with jealousy and worry for your sibling. You struggle with anger because you can’t go to every school or social activity you’d like. You struggle with embarrassment as your friends don’t always understand, and then guilt because you felt embarrassed. Or worse, guilt that you are healthy while one of your best friends is not. You know what? I get it! You totally have the right to feel like this sometimes. And its normal, and I’ve felt the same way. But it gets so much better as your and your sibling get older.

Do you know what’s awesome? Your sibling loves you in a way that most adults will never understand. They look at you and know how important they are to you, that you lose sleep crying for them, that you struggle with envy and guilt but that, regardless, you play with them like no one else can. You are their friend and protector. Even if they, like my brother, can’t speak, you both can carry out entire conversations that no one else understands. I bet you guys even have inside jokes. Friend, let me tell you – that is extremely cool!

Your parents see what you do for your sibling, and they are so very proud of you. And they don’t always know how to say it. They notice when you stop what you are doing to smile at them, to give them a hug or a kiss, or a hello. They see how softly you speak to them. They see how gently you play with them. They watch you go out of your way to include them in the things you do. They even know about that time you got in a fight with the kid next door to protect them. And they are so thankful for you. You are so helpful to your parents, even if you don’t know it. It takes a special person to do your job, and no one on earth could do it like you do.

Lastly, friend, promise me that you will remember something. In a very unique and indescribable way, you know love, you know heartache, and you know what is truly important. These lessons aren’t easy to learn, and they will eventually define who you are. They’ll cause you to mature much faster than your friends. They’ll cause a stranger to pull your parents aside and tell them how impressive you are. They’ll give you a weird sense of humor and ability to find joy in almost anything. You are an awesome person and even at your young age, you have changed the lives of others for the better. All because you are the sibling of a child with special needs. Enjoy your journey, friend!

With love and admiration,

Antwon

Antwon Chavis, M.D.
Resident in Pediatrics
OHSU Doernbecher Children’s Hospital

Dr. Chavis has a wide array of interests, including working with teenagers, children with mental health concerns and children/adolescents with behavioral or developmental issues. He enjoys working with older children and their families because he gets the opportunity to educate the patient directly, as well as the family that cares for them.

Lizzy’s Doernbecher story

When 10-year-old Doernbecher Freestyle patient-designer Lizzy Olivan came down with a fever last summer, her mom Beatriz knew something wasn’t right. We sat down to learn more about Lizzy (now 11) and her battle against Acute Lymphoblastic Leukemia (ALL).

***

Can you tell us more about Lizzy’s diagnosis?

Last August, she came down with a fever. I gave her some Tylenol and kept a close eye on her. After four days, I took her to the pediatrician, who thought she was likely fighting some sort of virus. It wasn’t normal for Lizzy to have a fever without a cough or other cold symptoms; I figured her little body was trying to fight something, but just didn’t know what.

Two or three days after that, I took her back to the doctor – she still had a fever and was pretty lethargic, just not acting like herself. Normally, she’s pretty dark by the end of the summer, but she looked pale – gray, almost.

Our doctor took and sent out a full bloodwork panel, and she called us that same evening to let us know it looked like Lizzy might have leukemia. Our doctor sent Lizzy to our hospital in The Dalles (Mid-Columbia Medical Center) right away, and from there she was transferred to Doernbecher.

She started treatment about two days after we arrived at Doernbecher, once they had determined what kind of leukemia it was. We were there for eight days, and then we got to go home to start the regular chemotherapy treatments.

What was Lizzy’s diagnosis like for you as a mother? Lizzy dance

Having worked in a dialysis center, I understood a lot of the medical terms when Liz was diagnosed. It made it much easier to understand everything going on and how things worked.

That said, it all happened really fast. Other than having her tonsils removed when she was 6, Lizzy has always been really healthy and active, so I didn’t expect it to be anything this serious. A few weeks before she was diagnosed, we were in Seaside, where she was competing in a national dance competition. She had complained about some abdominal pain, but we thought it must just be muscle soreness from her swimming and dancing. She’s a busy girl!

We’ve heard Lizzy’s physicians adore her! What was her time at Doernbecher like?

Lizzy really appreciates and likes her doctors. At a recent appointment, we heard that Dr. Lindemulder is a fantastic baker. Lizzy asked her about that, and Dr. Lindemulder promised to bring some cupcakes to her next IV treatment.

During her latent intensification period, which was every other week, we were at Doernbecher spending four to five days inpatient while she got a high dose of chemo. On one of those trips, she was bored – it was getting close to Christmas, and she wanted to be home. Our doctors asked if there was anything they could do for her, and Lizzy asked if anyone could get her a slushy. Dr. Garland went out to 7-Eleven and brought her a slushy. It was definitely a moment she (and I) will never forget!

Where is Lizzy at with her treatment today?

She’s been in maintenance since May. For her, that means she’s taking oral chemotherapy here at home in The Dalles and receiving IV chemotherapy once a month in the outpatient clinic at Doernbecher. That’s what it will look like for the next two years.

Lizzy turned 11 in June, and she just started middle school this fall. She’s playing flute in the band, and she’s back to dancing. She also teaches the little ones to dance tap and jazz. On top of that, she was just elected treasurer for her sixth-grade class and she’s a junior cheerleader. I tell her she needs to slow down!

Our family has become involved in raising awareness about ALL and other cancers that affect both kids and adults. We were involved in the Be The Match Walk+Run at Doernbecher and participated in Relay for Life as well.

What would you tell other parents and families who are going through what your family faced with Lizzy’s ALL diagnosis?

It takes time, and it will get better with time. These doctors know what they’re doing. They will do anything and everything in their power to help your child. Ask them any questions you may have – they will get you an answer. They’re amazing, they know what they’re doing and they will take care of your child.

I want to thank Doernbecher and the whole staff – everyone who has become a part of our lives. We’re very, very grateful for them.

***

Meet Lizzy and the rest of this year’s incredible Doernbecher Freestyle patient-designers here – we hope we’ll see you at this year’s collection reveal and auction on October 23!

How to talk to your kids about tragedy

How can parents and guardians best help kids understand and process tragedy? What does a “normal” reaction look like?

Below, OHSU Doernbecher Children’s Hospital Child Psychiatrist Ajit Jetmalani, M.D., provides guidance for families in the days and weeks following a high-profile disaster or tragedy.

  • Parents should be aware of their own reactions to these tragedies and attempt to refrain from alarming their children through verbal or non-verbal cues. Children often become concerned about their own safety or the safety of their families upon hearing of tragedies. Children often take their parents’ lead as to how to react.
  • Every child’s reaction is unique to his or her personality, developmental stage and experiences. Create a sense of openness to discussion but avoid pressuring children to talk.
  • It is important to make sure children understand that the events that took place are rare occurrences and that children remain quite safe and secure.
  • Parents should monitor their kids’ TV watching and make sure they are not overly exposed to tragedies such as these. News reports are too fast for kids to absorb. In addition, children process this type of information much differently than adults and think of the personal impacts more often than adults do.
  • It’s OK to proactively talk to your kids about these events, as they will likely hear about them later. Be sure to provide limited detail and highlight the rarity of such occurrences.
  • Experts also think that children who are preschool age and younger do not need to be provided with details of these events unless they ask.
  • Encourage kids to talk about how they are feeling and respond to those concerns.
  • Remember that loving and supportive relationships can protect against anxiety. Reinforce those relationships and remind kids how families help protect children.
  • Look for signs that a child is struggling to cope with their emotions: for young children; increased fear of separation, regression of skills (bed wetting, not wanting to dress themselves), hyperactivity or anger. For older children; increased isolation, irritability and seeming withdrawn or disinterested in school and friends. If you see these issues, talk to your child and seek assistance if necessary.
  • Parents strive to make the world as safe as possible for their children. When things like this happen, it feels like the shield is broken. We can’t control natural disasters and horrible violence, but we can control how we express love and compassion on a daily basis. We can continue to set clear expectations and provide instruction about how to be generally safe in society. Reminding children and adolescents about safety precautions they can take day to day can support an eventual return of a sense of safety in your family’s life.

Additional Resources
Dr. Jetmalani also recommends the following National Child Traumatic Stress Network resources for parents and caregivers:
Psychological First Aid Field Operations Guide
Tips for Parents on Media Coverage
Age-Related Reactions to a Traumatic Event

This post originally appeared on the OHSU News and Events site

Five things you might not know about cancer survivorship

Cancer-Survivorship-graphic-Doernbecher

1. Worry doesn’t go away when cancer does.
While completing the final chemotherapy and/or radiation appointment is a huge milestone in the family’s journey, just because active treatment is over does not mean that the family is “out of the woods.” Active treatment can provide an easy focus for the family’s worry, and once that has completed, the family must transition to a new “waiting game.” We often hear that transitioning away from frequent hospital and clinic visits and decreasing interactions with the medical team can be scary, because “no one is checking” (on the treatment progress) as frequently.

It’s normal in this time period to continue to experience a variety of emotions, such as fear about cancer coming back, anxiety and/or anger. Families can benefit from continued support and check-ins from loved ones during this time. Distractions (e.g., mini vacations, going to the gym, having a babysitter for date night) can help families cope with the waiting.

2. It can take a while to transition to a new normal.
Patients and families have been focused on medical efforts for a prolonged time; it can take a while to switch gears. The medical team often becomes a part of the family, and no longer seeing them as often means the family isn’t getting the encouragement and social support they were used to. It can be difficult for the entire family to transition back into work and school settings because these settings tend to be faster-paced and less focused on each individual, which can feel like a huge change from the personalized interactions with medical staff.

Additionally, the child and family are now faced with making decisions regarding who and how to tell people about the child’s medical history. Finally, if there are new limitations or long-term physical or mental changes as a side effect to treatment, adjusting to these new aspects in the family’s regular daily life can take time and effort. It can be easy to assume that now that “cancer is gone,” everything will return to normal. For many childhood cancer survivors, normal looks different after treatment. Checking in regarding ways to help (e.g., installing accessibility ramps) can help families feel less overwhelmed by any new needs their child has.

3. Caregivers: Take care of yourself, too.
It can be easy to neglect your own needs when a loved one is battling cancer or transitioning to survivorship. When you feel like your loved one is in a crisis it’s common and often necessary to prioritize the patient’s needs. However, treatment is often a marathon, not a sprint, and it’s important to keep everyone balanced and healthy.

Just like they ask you to remember on the airplane, parents and caregivers are encouraged to put on their “oxygen mask” first before assisting others with the idea that if you are not taking care of yourself, you won’t be able to help others. This is true for many of life’s events and phases: If you aren’t taking care of yourself (e.g., eating right, sleeping well, getting social support) you will not have much energy to support others. Additionally, as patients are coming out of the most active phases of treatment, it’s common for caregivers to feel guilty if they begin to go back to regular self-care routines. It’s important to recall that whatever helps caregivers feel happy, healthy, and balanced will also translate into better care for patients.

4. There are many ways to cope.
A good rule of thumb is: “If it’s not getting in the way, it’s OK.” The process of transitioning from being an active patient to reintegrating back into the community and your previous roles can be challenging. It’s good for people to start getting back to basic tasks of daily living, like going to work and/or school, completing daily tasks, eating well, sleeping well and engaging with others socially.

As a support person (e.g., friend, coworker, neighbor, family member), check in with patients about how you can best support them. Visiting, talking, having a book club, going on outings, or just sitting and watching TV together can help with social isolation. Some people appreciate having a good listener to talk to about their feelings and experiences, while others prefer not to talk about the cancer-related experiences and instead talk about lighter everyday topics. Both preferences are OK. It’s pretty typical not to want to talk about cancer or not to go right back to previous activities, hobbies or friend groups; this does not necessarily mean that the child and family are not adjusting or coping well. However, it’s also common for transitioning back into daily roles and expectations to be very challenging – in this case, it can be helpful to talk with a counselor or psychologist.

5. What not to do
Don’t
stop asking about how the family is doing; they may need your support now more than ever.

Don’t assume that the experience is over or the hardest part is behind them. For example, don’t say: “You must be so glad that’s over!” Instead, try, “How can I help as you guys move forward?”

Don’t assume everything will go back to the way it was before; sometimes long-term physical and mental effects from treatment are permanent or emerge slowly over time. Don’t say, “I knew everything would be OK; you are so strong.” Do try, “You guys are so strong and I’m still here for you in whatever ways you need.”

Finally, while the above tips can be useful, every family has their own experience of cancer treatment and survivorship. Let the family tell you what they need, and honor their wishes and requests. Don’t let concerns about saying or doing the wrong thing cause you to withdraw from the family. Apologize for missteps and keep showing up for the family – loved ones are vital throughout the family’s journey, including in their transition to survivorship.

 

Learn more
For more information regarding childhood cancer survivorship, please visit the following:
Our Childhood Cancer Survivorship Program
The National Children’s Cancer Society (NCCS)
Children’s Cause Cancer Advocacy Survivor Resources
Critical Mass

 

Susanne W. Duvall, Ph.D.
Assistant Professor, Department of Psychology
The Institute on Development and Disability and the Child Development & Rehabilitation Center
OHSU Doernbecher Children’s Hospital

Caroline J. Grantz, Ph.D.
Postdoctoral Researcher, Department of Psychology
The Institute on Development and Disability and the Child Development & Rehabilitation Center
OHSU Doernbecher Children’s Hospital

 

Six strategies to improve your baby’s sleep skills

KC FB Profile logoThe Dr. Super Sleep Series is written in collaboration with KinderCare. KinderCare believes that early childhood education creates brighter futures. They are the largest provider of early childhood education in the nation and they are passionate about creating a world of learning, joy and adventure for more than 169,000 children every day. For more parenting resources, crafts, learning activities and family fun, visit their blog

It’s 2 a.m. and little Quinn is wide awake and calling (okay, wailing) for you – again.

If your child is healthy and over six months of age, then she is developmentally ready to learn self-soothing skills. Hooray! If you and your child are not getting enough sleep, then it might be time to learn some sleep skills that will help the whole family get more rest. Dr. Elizabeth Super, a pediatrician and children’s sleep specialist with the Pediatric Sleep Medicine program here at Doernbecher Children’s Hospital, shares six common-sense approaches for breezier ZZZs.

1. Consistency is key. Soothing at intervals? Crying it out? Co-sleeping? Any of these approaches can work well, but the secret to helping your child learn sleep skills is to pick an approach that you and your partner can deliver calmly and consistently.
Having trouble? Get realistic about what your family can do consistently and then give it a week (or two). How quickly your child adopts new sleep habits depends on his sleep temperament and his developmental stage. Two weeks gives him plenty of practice understanding what to expect at bedtime.

2. Start at bedtime. “When trying to change sleep habits, we think about bedtime first,” Dr. Super says, as it’s easier for parents to stick to a consistent approach in the early evening – and harder to find the patience at 3 a.m. Begin by setting a regular bedtime between 7 and 8 p.m., Dr. Super advises.
Having trouble? Try moving bedtime 20 minutes earlier than your normal routine. A child who isn’t overtired will have more reserves to spend on learning new sleep skills.

3. Find a great routine. Maybe your child responds well to a bath, massage, singing, or the scent of lavender. Whatever it is, build a ritual that feels relaxing for both of you. Dim lights will also help your baby understand that when it’s dark out, it’s time for sleeping.
Having trouble? Try simplifying. The classic “brush teeth, book, bed” routine is simple and clearly communicates that it’s time for bed.

4. Put her down drowsy but awake. “If you don’t want to be there in the middle of the night with your child, you don’t want to be there when she falls asleep at bedtime,” Dr. Super says. Put your child down in her crib drowsy but awake. Keep in mind that some babies will have more difficulty putting themselves to sleep than others, and some transitions – like vacations, illness, or a move – will cause disruptions in sleep routines.
Having trouble? Try changing your approach. If your baby is older than six months and you’ve always soothed her to sleep, try making your soothing routine very brief or simply putting her down and saying “Good night, I love you, it’s time to go to sleep.” She will probably protest in the short term, but it will give her the chance to practice putting herself to sleep independently.

5. Introduce a lovie. You don’t need to wait for your child to imprint on a favorite teddy bear; you can pick his transitional object for him. Once your child is over 1 year old, rolling over, and raising his head, it’s safe for him to sleep with a special blanket or a small stuffed animal – just watch out for button eyes or other small bits that can be choking hazards. Including that beloved bunny or blankie in the regular bedtime routine can help your child associate comfort and sleep with it.
Having Trouble? Try an article of your clothing. Some babies respond well to familiar smells, so try putting him to sleep with a scarf or T-shirt that smells like mama. If your baby loves his binky, try scattering extra pacifiers around his crib so that he can always reach one when he wakes up at night.

6. Plan for night wakeups. Middle-of-the-night wakeups can be a challenge. Check to make sure that your child is not wet, ill or cold, and then give a calm, brief, reassurance (nothing fun and no feeding) and leave your child to settle back to sleep. Once they know that nothing too exciting is going to happen in the middle of the night, some babies have an easier time getting back to sleep on their own.
Having trouble? Try letting him fuss. If you’ve already done a brief intervention, let him fuss for a length of time that works for your family. If he still can’t put himself back to bed, then soothe him to sleep. After all, good rest is important for everyone, and you can practice building self-soothing skills again tomorrow – beginning at bedtime.

Other posts in the Dr. Super sleep series:
What is your baby’s ‘sleep temperament?’
Monsters under the bed: banishing bedtime fears
Battle bad dreams, night terrors and things that go bump in the dark
The real scoop on teething and sleep

 

Dr. Elizabeth SuperElizabeth Super, M.D.
Assistant Professor of Pediatrics
Doernbecher Pediatric Sleep Medicine Program
OHSU Doernbecher Children’s Hospital

Doernbecher Best in the Country U.S. News & World Report

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