The healing power of art: CHAP at OHSU Doernbecher

Children’s Healing Art Project (CHAP) has been spreading joy at OHSU Doernbecher Children’s Hospital for 10 years. We asked CHAP Lead Hospital Art Teacher Sharon Jaye Perrins to tell us more about CHAP’s mission and impact at OHSU Doernbecher.

20161104_162835 copy“I just love this. This is how I heal.”

That’s how one mother of an oncology patient recently explained the solace she found through the healing power of art.

CHAP was started by Frank Etxaniz in 2006. Frank believed that it was possible to harness people’s nervous energy and transform it into creative energy. Making art can be such a release.

So many beautiful connections happen at the art table. We see young patients becoming fast friends. We witness mothers supporting each other, spot on. Fathers sit down and surprise their children with what they can do when they pick up a paintbrush. This feeling of community is at the heart of CHAP.

Where can OHSU Doernbecher patients connect with CHAP?

Each week at OHSU, CHAP’s teaching artists lead 36.5 hours of art-making all around campus. On OHSU Doernbecher’s 8th floor, CHAP connects with individuals awaiting surgeries. The waiting area is transformed into a beading workshop with patients and families pulling up chairs or kneeling on the floor alongside coffee tables topped with green felt tablecloths. Busy hands help change a room’s energy, and entire families are welcome – the more, the merrier!

CHAP also offers art in two inpatient locations at OHSU Doernbecher: the 9th floor (General Pediatrics) and 10 South (Pediatric Hematology/Oncology). Our style is to leave things very open-ended so children have freedom to decide what they want to create. It’s truly a pleasure to watch art-making unfold, whether it’s with clay, paint, beads, sequins or feathers.

Our longstanding philosophy at CHAP is that the children will be recognized for their creativity and ingenuity, not by their disease or diagnosis.

CHAP is proud to contribute to the patient’s experience in the hospital. Our dedicated team of volunteers and art teachers has crafted this in-hospital art program to bring patients into a communal space where they can work side by side with other patients and their families. When a patient is in isolation, CHAP can lovingly assemble art supplies to be delivered to the patient’s room to help keep them active, engaged and on the road to wellness.

A great way to connect with CHAP is by contacting one of OHSU Doernbecher’s amazing Child Life Specialists. Or just keep an eye out for our colorful art carts rolling down the hallways of OHSU Doernbecher. We’d love to bring a little ray of light your way!

How can families stay engaged with CHAP outside of the hospital?

When families are discharged from the hospital, we encourage them to keep in touch by visiting our CHAP studio in Southeast Portland. All children and teens affected by pediatric illness or special needs are invited to participate in inclusive Art Club events at the studio, free of charge. Learn more here.

Interested in learning more about CHAP? Visit their website to find out more!

Spring forward, fall back: time change tips

Adjusting to a new sleep schedule can be tricky, but a little help and a few days of preparation can make all the difference. Elizabeth Super, M.D., pediatrician and children’s sleep specialist with the Pediatric Sleep Medicine Program at OHSU Doernbecher Children’s Hospital, provides some tips to make sleep transitions easier on the whole family.  

Establish a routine
Bedtime and wake-time routines help anchor a child’s day and reduce anxiety.

  • In the evening: Keep things quiet, cool and dark. Dim lights 30 minutes before bedtime and restrict use of electronics or any other media in the bedroom environment as they emit a lot of light. Consider blackout shades if natural or artificial light is making its way into the child’s room and affecting sleep.
  • In the morning: Ease into the day by bringing in bright light, either by turning on lights indoors or opening curtains or window shades. If it’s bright enough outside, step outside. Increasing light in the morning can help shift kids’ body clock or Circadian rhythm, but this can be difficult, especially in Portland!
  • In between: Try to get as much light and as much exercise as possible. This goes for grown-ups, too!

Daylight Saving Time
>>Spring forward: The great thing about Daylight Saving Time is that spring is here! This is a nice time of year (especially for those living in the Pacific Northwest) to come out of the darkness and enjoy more time outside.

Consider shifting the schedule slowly. Although the time difference is only one hour, think about adjusting the sleep schedule three to four days before “springing forward.” Daylight Saving Time begins Sunday at 2 a.m., so start on Thursday and make incremental 15-minute shifts every day.

Move bedtime up by 15 minutes. The next morning, wake kids up 15 minutes earlier – it will likely be dark out, so introducing light in the morning will be extra important.

“Losing” an hour on Sunday can return kids to their “regular” schedule. For example, an 8 p.m. bedtime will inch closer to 7 p.m. in the days leading up to Sunday. Then on Sunday evening, “return” to an 8 p.m. bedtime and a “normal” wake time with less disruption.

>>Fall back: When Daylight Saving Time ends, bedtime will be an hour earlier. Kids may need a little more time to adjust, but a slow shift to their sleep schedule will lessen the shock. Parents can begin pushing bedtime back in small increments a few days in advance and can also try to wake kids 15 minutes later. Maintain the same morning routine and enjoy earlier morning light while it lasts!

What’s normal? What’s not?
Mornings may be a little more challenging, as kids may be a bit more tired or groggy than usual. Know that for the next week, it may be more difficult to wake them in the morning but that eventually should resolve as they acclimate to the new time.

If kids are having difficulty adjusting, parents and caregivers should consider speaking with their pediatricians. There could be something else going on, like a sleep disorder, anxiety or worry, and they want to help.

What about jet lag?
Adults typically need one to two days per time zone to fully adjust. Kids, however, can be more sensitive. For parents expecting a big swing with jet lag, begin shifting the child’s sleep schedule in small increments (the same strategy recommended for Daylight Saving shifts) in advance of any travel. Be patient and understanding with family needs.

How much sleep do kids need?

  • First year of life: 13-16 hours
  • Toddlerhood (ages 2-5): 11-13 hours
  • School-age kids: 11-12 hours
  • Middle-schoolers: 10-11 hours
  • High-schoolers: 9 ¼ hours

Adults should also make sleep a priority. It can be easy to put off because, as parents, there’s simply so much to do. Try to remember that eight hours of sleep a night really helps parents be at their best.

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

 

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

 

 

 

2016 in review: Doernbecher’s top stories

Safety first! Tips and tricks to keep kids safe and healthy reigned supreme on our blog this year – from Pokémon GO to laundry detergent packets. At OHSU Doernbecher Children’s Hospital, we are committed to giving parents and caregivers the resources they need to make informed decisions about their children’s well-being.

Here are this year’s most-read blog posts. Enjoy!

1. Laundry detergent packets: convenient or catastrophic?
Ever since laundry packets were introduced to the U.S. marketplace in 2012, packet exposures have occurred at astonishing rates. Pediatric resident Katelyn Saarela explains the dangers of packets and encourages readers to #PassOnPackets to help implement change and keep kids safe.

2. ‘Grass Strong:’ Andy’s Doernbecher story
The Grass family’s world was changed in an instant when a sneaker wave hit 10-year-old Andy at the Oregon Coast. His dad, Paul, shares how Andy’s hospitalization and prolonged recovery affected their family – and how it continues to teach all of them strength, resilience and healing.

3. Tricks for dealing with Halloween treats
Dietitian Tracy Severson provides tips and tricks to minimize (or avoid) sweet Halloween temptations while still enjoying the holiday.

4. With Pokémon, not everything’s a go
Parents have a lot of questions about Pokémon GO – and OHSU Doernbecher Tom Sargent Safety Center Director Dr. Ben Hoffman has answers! He provides tips for staying safe (and having fun) while chasing Charmanders.

5. Swimming in the NICU
The moment your child is admitted to the NICU, your life changes. NICU mom Megan explains how she stayed afloat in the NICU and shares tips for other families who aren’t sure who or how to ask for help.

6. Braylin’s Doernbecher story
“She thinks of Doernbecher as a safe and happy place, and that has everything to do with the wonderful people who work every day to give children hope and health.” Doernbecher mom Delinah shares her daughter’s journey from a Autoimmune Hepatitis diagnosis to an emergency liver transplant.

7. Marijuana safety
After seeing a significant in crease in he number of reported marijuana exposures in the past three years, the Oregon Poison Center at OHSU developed safety recommendations around marijuana products. An important read!

8. From patient to med student: Shira’s Doernbecher story
When she was a freshman in high school, Shira Einstein was diagnosed with Hodkin’s Lymphoma. Now a third-year medical student at the OHSU School of Medicine, she believes being a cancer survivor comes with a responsibility to love her life and to invest in the health of others. In this post, she explains how the care she received and the bonds she developed at OHSU Doernbecher impacted her career path.

9. A day in the life of a Doernbecher doc
In celebration of Doctors Day, we sat down with Dr. Judy Guzman, a provider who’s cared for OHSU Doernbecher patients with infectious diseases for the last 12 years. She walks us through an average day – from her morning run to conference calls and helping her kids with homework.

10. Is rice cereal safe for your child?
Dr. Natasha Polensek 
addresses a study that found infants who consume increased amounts of rice cereals and foods containing rice have higher levels of urinary arsenic. She explains what parents (and pregnant women) should be aware of.

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If you have a story you’d like to share in 2017 – or if there are specific stories you’d like to see more of – please contact our social media team at socialmedia@ohsu.edu. You can also submit your Doernbecher story  here.

Bedtime basics

This article was written by Margaret Seiler and originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine.

While anything from caffeine to a chronic illness to the excitement of household visitors can make it tough for kids to sleep, one of the most common sleep disruptors for children – and adults – is simply stress.

“It’s when we’re stressed and hyperaroused, physiologically, that it’s hard to initiate sleep,” says Kyle P. Johnson, M.D., a child psychiatrist and sleep physician at OHSU Doernbecher Children’s Hospital. “Families can suffer stress that can resonate, given the sensitivity of kids. The resonating stress and worry may get in the way of sleep, either falling asleep at night or returning to sleep after natural awakenings in the middle of the night.”

Just like for adults, the lack of sleep can set off a vicious cycle for kids, Dr. Johnson says: “Then they begin to worry about not being able to sleep and this worry causes more stress, which perpetuates the problem.” Trying to catch up on lost sleep, as teenagers sometimes try to do by sleeping in on the weekends, “can impact your circadian system, which can exacerbate the problem.”

Between school and work schedules it’s easy for families to feel harried, and it’s impossible to eliminate stressors altogether. But there are steps parents can take to help their children be ready for sleep, and help themselves relax before bed, too. “All of us need wind-down time. When we’re stressed about certain things, we may be tempted to try to deal with that thing all the way up until the time we turn out our lights, and that can cause problems with sleep onset.”

When under stress, it is important to maintain wind-down time, including disconnecting from electronic items, decreasing light exposure and, says Dr. Johnson, “continuing with established bedtime rituals and routines.”

Dr. Johnson says it’s also smart to talk with children (at an age-appropriate level) about the anxiety they’re feeling or stressors that the family is under. “They’ll catastrophize,” Dr. Johnson notes: A child might overhear a parent talking about financial woes and start worrying they’ll lose their home. “If you have a discussion, you can often allay some of those worries and concerns.”

Have these talks well before bedtime, so kids have time to process. If a child brings up a worry at night, a parent can offer brief reassurance but suggest talking more at another time.

If your child has a persistent sleep problem that’s causing distress at home or difficulties at school, talk to your pediatrician. To schedule an appointment with OHSU Sleep Medicine, call (503) 346-0640.

Tips for supporting one another

Those of us working in the Division of Child and Adolescent Psychiatry at OHSU believe that the path to meeting the challenges of a complex world begins with the experience of being loved and loving others, in our homes and in our communities. Our education and experience with children and families help us to recognize that while science evolves rapidly, the basic nature of the human experience remains the same.

We are daily awed and inspired by the courage, strength and resilience of the youth and families we work with. We will continue to join with you to stand firm in advocacy for respect, diversity, compassion and equity. We will stand up against bullying, intimidation and exclusion.

We are deeply troubled that expression of hatred and threats toward various members of our society are commonly being expressed in our children’s schools and neighborhoods. Parents, teachers and mentors are struggling to find ways to reassure children that their country is not falling apart, that they will be safe and that their friends will be protected. Many find this task of providing reassurance difficult when there are so many unknowns.

Children need to know that adults around them will not accept cruelty toward others, that conflict and intolerance expressed by others should not to be emulated and perpetuated. We can help children recognize this by active discussion of cultural and moral norms and respectful listening. We must remember that youth who bully need our help as well, through limits, supervision and exploration of the source of their actions. They need sustained support to successfully participate in collaborative and mutually respectful peer culture.

Additional tips you may find useful during this time include:

  • Take care of yourself. Children are very aware of their loved ones’ emotions, even when they do not seem to be paying attention. Take the breaks you need to express your emotions with trusted supports and collect your thoughts. Be authentic and compassionate with your expression while helping your children learn how you are effectively processing your emotions.
  • Make time to spend together; when things are hard, being together and enjoying each other’s company is a really important way to feel better.
  • Let children and youth know that you want to hear about their thoughts and feelings, how they are experiencing the world, and that you will protect them.
  • Remind children to talk to a trusted adult if they hear or see something they don’t understand or that bothers them about how people are treating one another.
  • Monitor children’s access to media and have conversations with them about what they see or read. Limit exposure to visual media as it is harder to understand than conversation or written material.
  • Look for signs of struggle: behavior changes, irritability, difficulty sleeping, physical complaints that signal stress.
  • Young children typically express and work through their stress in their play. Encourage their imagination and creativity. They are exercising their minds: developing characters, stories and scenarios that help them manage their hopes and fears. Try not to jump in and offer interpretations (“this lion reminds me of a bully”) or interrupt with questions (“is this making you think of what you heard on the news?”). Instead, simply describe what you observe (“this lion is roaring.”)
  • Grade school age and slightly older children are applying their ideas in their world. Help them gain understanding and perspective by reading about history and how people can disagree, find common ground and work for good. Help them generate ideas about what they would like to do influence their world and implement what is feasible.
  • Teens and young adults have greater independence to engage in action. Supporting creative and safe participation in championing causes and addressing concerns can counteract despondency, fear and urges for withdrawal.

If you are worried that your child is struggling or if your child has talked about self-harm, seek care from a mental health professional or contact a crisis line: Suicide Lifeline (Lines for Life): 800-273-8255 or text 273TALK to 839863.

Love and connection are healing and powerful forces that promote courage, cohesion and resilience, setting the stage for healthy child development and a healthy society.

Learn more about the Division of Child and Adolescent Psychiatry at OHSU here.

Triple threat: The lasting effects of the female athlete triad

This article was written by Carin Moonin and originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine.

 

The 1972 passage of Title IX, a federal law that prevents discrimination on the basis of sex in any federally funded education program or activity, dramatically increased the number of female athletes.

It also brought a new focus on issues specific to them. One was the female athlete triad, three disorders that tended to coincide in young women:

  • low energy with or without disordered eating,
  • irregular menstrual periods
  • decreased bone density

An unexplained rate of stress fractures occurring in girls participating in lean-body-focused sports, such as dance, gymnastics, figure skating and distance running, brought attention to this phenomenon. Today, health professionals have a better understanding of how these conditions are related and what can be done to treat the triad.

Historically, there was a stigma and misconception that psychiatric issues and more serious eating disorders such as anorexia or bulimia predisposed those girls to sustain fractures: In essence, they were starving themselves. However, eating disorders like these are very rare: Two to four percent of girls with female athlete triad. Health professionals now understand that much of this is unintentional and many of these young athletes are simply “underfueled.”

If a girl is training more than 90 minutes per day, she needs a bare minimum of 30 calories per kilogram of body weight per day in order for her brain to release leutinizing hormone. The hormone stimulates estrogen production and ovulation, helping to maintain bone density. For example, a 130-pound girl would need a minimum of 2,700 calories daily, with the recommended intake being 45 calories per kilogram – around 4,000 calories a day.

Adolescence is also a critical time for developing bone mass. Athletes may be getting plenty of exercise, which helps in the bone department, but they also need to eat plenty of calcium-rich foods paired with foods high in vitamin D.

“If you spend your adolescent years losing bone density instead of building it, there’ll be less bone in the bank when you’re older,” says Andrea Herzka, M.D., an orthopedic surgeon at OHSU. “It’s like spending from your savings account: Even if you restart deposits, the total is less than if there hadn’t been a hiatus.”

Education from parents and coaches is crucial. Adolescent athletes need to understand their body needs fuel just like a car. Running on empty can cause long-term health complications such as osteoporosis (brittle bones), cardiac problems, infertility or immune system problems.

Also, keeping track of a girl’s period, especially during training season, is important. If periods are irregular during training, check with your pediatrician, Dr. Herzka suggests; he or she is likely skilled in treating this disorder or, if not, can refer to adolescent health or sports medicine specialists to provide further education to both families and patients.

“Kids have a hard time thinking long-term,” Dr. Herzka says. “Explaining there could be premature osteoporosis may not motivate a teen, but explaining the immediate risks of possibly breaking your tibia, hip or foot can see more realistic.”

For more information about the female athlete triad, talk to your pediatrician or call OHSU Sports Medicine at (503) 494-4000. 

 

Braylin’s Doernbecher story

When she was 8 years old, Braylin Soon was diagnosed with Autoimmune Hepatitis and underwent an emergency liver transplant.

We sat down with her parents, Kevin and Delinah, to learn more about their daughter’s story and how the experience challenged and changed their entire family.

May 2014 was a big month for the Soon family. Their oldest daughter, Braylin, was cast in a production of “Les Misérables.” Her older brother, Isaac, was finishing up his time at elementary school and they were planning a birthday party for their youngest daughter, Addison, who was turning 7.

“At Addison’s party, Braylin threw a bit of a tantrum about the cupcake she was given,” Delinah said. “This was completely out of character for Braylin, so we decided to end the party and go home.”

Things seemed to return to normal the following the week. Braylin met the “Les Misérables” cast she would be working with over the summer. Delinah was busy running the school book fair. Braylin’s behavior had gone back to that of a typical 8-year-old girl, though she did have several nosebleeds.

“On Thursday, we noticed Braylin’s eyes were yellow. We called the pediatrician and went straight over to her office, where she drew some blood and said she’d call with results,” Delinah said.

The next day, Braylin’s skin had a yellow tint – so they rushed her back to the doctor’s office for additional tests.

Just after dinner on Mother’s Day on May 12, Braylin’s pediatrician called and said she was concerned about Braylin’s labs. She told the Soons to head to OHSU Doernbecher Children’s Hospital for IV fluids overnight to flush out Braylin’s kidneys.

“Braylin happily snuggled into the hospital bed and we were set for a restful night,” Delinah said. “One night turned into nine nights and a change in her diagnosis.”

Braylin’s parents learned their daughter was in acute liver failure and she was diagnosed with Autoimmune Hepatitis. She was born with the gene that causes the disease, which had activated and was responsible for the quick decline in her health. The bloody noses, yellow skin/eyes and even the change in her mental state (i.e., the birthday party tantrum) were all symptoms of the liver failure.

“Our hearts sank as we learned that our daughter needed to be transferred to another facility in the event that she may need a liver transplant,” Delinah said. “Braylin was sad because she realized this could jeopardize her dream to be in ‘Les Misérables’ – and maybe more.”

On May 21, 2014, three hours after the devastating news, Braylin and Delinah gave big hugs to their family and boarded a Life Flight jet headed for Lucile Packard Children’s Hospital Stanford.
When Braylin was stabilized and moved to a room, a caseworker sat down with Delinah. It took three nights in the ICU to fully understand how severe Braylin’s liver failure was, and it was determined that she would, in fact, need a transplant. It was such an urgent case that she would be at the top of the UNOS list.

“Nothing we had experienced in our lives could compare to that moment – we were just told that our daughter was dying and her only chance to live was for another child to die in the next few days,” Delinah said. “The stress was nearly unbearable, especially with our family being separated.”

On May 29, one of the main surgeons walked into Braylin’s room with a smile on his face and a cloth bag that said “Caution: Live Organ.”

“Congratulations, Braylin!” he said. “We have a liver for you.”

Delinah asked the inevitable question: “It’s not in the bag, is it?”

“No,” he laughed, “this is my lunch!”

A little humor in such an emotional moment was exactly what the Soons needed. Braylin was pretty sleepy but she quietly lifted her right hand and whispered, “Yeah!”

Delinah called Kevin and he caught the evening flight down to Palo Alto.

“We sat with Braylin through the night,” Delinah said. “In the morning, we helped get her ready for her surgery: We washed her body, braided her hair and cleaned off her nail polish.”

Braylin was taken into surgery at noon on May 30. Kevin and Delinah sat for a while in the waiting room but most parents were there for their child’s appendicitis or tonsils, so they spent the majority of the day outside walking and talking. Eventually they headed back in and waited until one by one each family member left. They were the only ones left.

At 6:30 p.m., Braylin’s main surgeon, Dr. Carlos Esquivel, walked through the door and sat with them.

“He said our daughter was a pretty sick little girl,” Delinah said. “She only had about 2 percent liver function left but the transplant had gone as expected – she was doing well and would be out of surgery in a bit, when we could finally see her.”

The sigh of relief in that moment was the biggest the Soons had breathed in a month. A few hours later they were sitting with Braylin back in the ICU. It was hard seeing her hooked up to all the machines with a breathing tube, Delinah said, but when she opened her eyes they knew she would be OK and back home arguing with her siblings in no time.

And she pretty much was.

Braylin was discharged from the hospital a week after the transplant and her family moved to the Ronald McDonald House. Braylin continued to have daily blood draws and clinic check-ins until her team at Stanford determined that she was healthy enough to return home.

They arrived home on June 21 and started to figure out life with a medically fragile child.

Braylin and Dr. Amy Garcia

Braylin and Dr. Amy Garcia

“Since returning home, Braylin has continued to thrive and grow, thanks primarily to Dr. Amy Garcia and her outstanding care,” Delinah said. “Braylin passed a milestone – two years post transplant – in May and she treats every day as a gift.”

She has enjoyed any opportunity to give back to Doernbecher, including her annual birthday toy drive, which this year resulted in 250 gifts being available for patients who need something to smile about.

“She thinks of Doernbecher as a safe and happy place, and that has everything to do with the wonderful people who work every day to give children hope and health,” Delinah said.

And for those wondering – yes, Braylin made it back to rehearsals in the middle of summer and was able to complete her “Les Misérables” dream. As an added bonus, her GI team from Doernbecher even bought tickets and came and saw the production!

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Ten-year-old Braylin is one of this year’s Doernbecher Freestyle patient-designers. Watch the moment she learned she would be designing custom Nike shoes and apparel (around the 0:30 mark): YouTube Preview Image

Learn more about Braylin 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 28!

Advocating for hope: Chehayla’s Doernbecher story

Ten years ago, Doernbecher patient Chehayla Hyatt was diagnosed with Cystic Fibrosis. Over the years, Chehayla and her family have dedicated their efforts to raising awareness about CF and its impact on patients and families. Below, Chehayla’s mom, Brianne, shares their powerful story.

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What is Cystic Fibrosis? Cystic Fibrosis, or CF as it’s often known, is caused by a defect in the CFTR gene. In people with CF, this gene causes a thick build-up of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria, leading to infections, extensive lung damage and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Learn more about CF here.

The day of Chehayla's diagnosis

The day of Chehayla’s diagnosis

Our daughter Chehayla was diagnosed with Cystic Fibrosis when she was 10 months old. At her first Cystic Fibrosis Clinic appointment at OHSU Doernbecher Children’s Hospital, we were given a handout about the Cystic Fibrosis Foundation (CFF). It explained that the CFF was responsible for raising funds to create new therapies to sustain the lives of those living with Cystic Fibrosis. Shortly after Chehayla’s diagnosis, I had the feeling that I needed to do something – I couldn’t just sit around waiting for others to help save my child. I called the Cystic Fibrosis Foundation and asked how I could get involved. Since that day our family has been supporting the Cystic Fibrosis Foundation in raising awareness and donations.

This summer Chehayla’s sister, Talon, was asked to represent Oregon at the Cystic Fibrosis Foundation’s Teen Advocacy Day in Washington, D.C. While in D.C., Talon met with Sen. Jeff Merkley and legislative assistants of Reps. Kurt Schrader, Peter DeFazio and Earl Blumenauer.

Talon spoke with them about what life is like for her and what it’s like having her sister constantly in the hospital because of CF. She talked about how lonely her room is and how hard it is to focus in school when her sister is gone. She told them about how Chehayla has been admitted to OHSU Doernbecher 17 times in the last seven years. She told them about how at just 9 years old, her sister’s veins have become useless for administering IV medication.

After bringing the room to the brink of tears, Talon then asked them to join the Senate Cystic Fibrosis Caucus and the House of Representatives’ Congressional Cystic Fibrosis Caucus to support funding for the NIH and FDA. She pleaded for them to join our efforts in improving the lives of all those in our CF community. In that meeting Senator Merkley agreed to join the Senate CF Caucus and a few weeks later we learned that Representative Blumenauer joined the House CF Caucus.

Talon talking with Sen. Jeff Merkley

Talon talking with Sen. Jeff Merkley

Our advocacy for Cystic Fibrosis extends beyond our support of and work with the CF Foundation. When Chehayla is admitted to OHSU Doernbecher, we’re there anywhere from two weeks to a month at a time. I like to think of ourselves as Doernbecher residents. It truly has become our home away from home.

Since we are there so much, I’ve found that I have a unique perspective. A few years ago I joined the Cystic Fibrosis Family Advisory Council at OHSU Doernbecher. Our time at “Club D” (our nickname for Doernbecher) has proven to be very useful in advocating for changes. The Family Council has been working closely with the Unit Nurse Management to implement various changes to improve the inpatient experience for other families with CF.

Chehayla and Hospital Facility Dog Hope hanging out at "Club D"

Chehayla and Hospital Facility Dog Hope hanging out at “Club D”

No parent wants their child to be sick or have to spend time in the hospital, but we are so grateful that we have Doernbecher. Our CF Care team always takes our concerns into consideration and we make decisions for Chehayla’s health as a team. If I had to say what it is about OHSU Doernbecher Children’s Hospital that makes it so great, I’d say it’s the people. Our care team, the nursing staff, Child Life, administrative support, RSAs, housekeeping – they are all such friendly, caring people. They’re what make Doernbecher great!

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CF families: Did you know that there’s a Cystic Fibrosis Family Support Group at OHSU Doernbecher? It’s held the second Thursday of every month. If interested or if you have questions, please email mccullar@ohsu.edu or call (503) 494-8023. Note: Due to infection control guidelines, patients with CF cannot attend.

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Learn more about Chehayla 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 28!

Tricks for dealing with Halloween treats

Does the thought of Halloween candy sitting around your house have you feeling a bit spooked? You can still enjoy this festive holiday while minimizing – or even avoiding – the sweet temptations. Here are some tricks for dealing with the treats:

  • Wait until the day of Halloween before purchasing candy to pass out. If that isn’t convenient, try waiting until the week of Halloween and keep the bags sealed and out of sight until the trick-or-treaters start arriving.
  • Buy your least-favorite type of candy – you’ll be much less tempted to dip into the candy bowl if you don’t like the treats.
  • Choose healthier treats to pass out, such as small packages of popcorn, trail mix, pretzels, dried fruit or granola bars.
  • Consider giving out Halloween-themed toys instead of candy. Craft and party stores have a wide selection of fun, inexpensive party favors such as temporary tattoos, whistles, stickers, bubbles, spider rings, and – my personal favorite – zombie eye patches. Another benefit of providing non-food treats is to help make Halloween more inclusive for kids with food allergies as part of the Food Allergy Research & Education’s (FARE’s) Teal Pumpkin Project. All you have to do is paint a pumpkin teal or print and post a sign from FARE to indicate you are participating (teal is the color of food allergy awareness).

What to do on November 1 when there’s leftover candy calling your name? Get it out of the house! I love the Halloween Candy Buy Back program – here’s how it works:

  • Drop by a participating dentist office to deliver your leftover candy after Halloween. Contact your dentist to find out if they are participating, or go to halloweencandybuyback.com and enter your zip code to search for a list of local participants.
  • Your candy will be weighed and you (or your kids) will be reimbursed per pound (usually $1 per pound of candy, although some dentists may offer another form of “buy back”). Many dentists also enter donors into a raffle for a chance to win additional prizes. This is a great incentive for kids to donate their excess candy!
  • The candy is then sent to Operation Gratitude, who uses it to create care packages for troops stationed overseas.

This program is a fantastic way for little ones to enjoy a reasonable amount of candy on Halloween and still have a treat (through cash and raffle prizes) after the holiday, all while supporting a good cause.

Plus, it eliminates the post-bedtime dips into the candy stash by Mom and Dad…

Happy Halloween!

 

Severson-Tracy_13_blogTracy Severson, R.D., L.D., is the dietitian for the Center for Preventive Cardiology at the Knight Cardiovascular Institute. She specializes in nutrition counseling for cardiovascular health and weight management.

Safe sleep tips

I remember running into the Emergency Room and seeing nothing but tears: tears from the nurses and staff, tears from a distraught mother, and then tears clouding my own vision when I saw the lifeless form of the 6-month-old boy.

I was as close with his family as I had been with any family as their pediatrician. I was present at his birth, provided his well-child care and cared for his sister through an illness and subsequent rehabilitation.

Everything was perfect until that night, when I signed his death certificate.

He died in his sleep, and the autopsy showed no abnormality or disease. The medical examiner ruled his death to be Sudden Infant Death Syndrome, or SIDS. He had slept in bed with his parents, and they found him unresponsive at 4 a.m. He was fine the day before, and then he was gone.

According to the U.S. Centers for Disease Control and Prevention, about 3,500 infants die of SUID (Sudden Unexpected Infant Death) each year, and about 40 of those happen in Oregon. Of those deaths, about 25 percent are the result of identifiable occurrences during sleep, including smothering and suffocation from blankets, pillows or other people. The rest have no clear explanation, and are classified as either Sudden Infant Death Syndrome (SIDS), or unexplained. In 1992, the American Academy of Pediatrics (AAP) recommended that all infants less than 1 year of age be placed on their back for sleep, followed by the Back to Sleep campaign in 1994. As a result of those recommendations, we have seen a decrease in deaths from SIDS of approximately 70 percent in the last 30 years. Those recommendations can be found here and are also listed at the bottom of this blog post.

While we know what works to help ensure that babies sleep safely, it can be challenging for parents to adhere to best practice. Living with a newborn is exhausting, terrifying and, worst of all, unremitting: night after night, for months on end – it is completely understandable why parents may choose to bed share with their infants.

Sociocultural pressures and beliefs, coupled with concerns like spitting up, lead parents to choose to co-sleep with their babies, or to allow them to sleep on their stomachs. As the parent of three kids (meaning I myself have survived having three infants), I have memories of the sleep deprivation. However, I am sure I have repressed most of the true memories of the absolute exhaustion that our children wreaked upon us.

As a pediatrician, I spend hours every week discussing safe sleep with families, reviewing the recommendations that prevent tragic deaths from SIDS and suffocation. Many families acknowledge that they are following best practice. Many more families confide that following the guidelines is a challenge; they often feel the infant prefers sleeping on her stomach, that the baby will not sleep alone in her bassinet or crib or that they are uncomfortable being separated from their baby.

Tragically, many families may also be forced into unsafe situations due to space or financial restrictions.

Last month, pediatricians at Penn State published a brilliant study using video surveillance among participating families to show that most infants were sleeping in unsafe ways. Many babies were put to sleep in dangerous places, on their sides or bellies, and most had dangerous items in their sleep spaces. Moreover, when babies awoke during the night, many were moved to an unsafe sleep environment.

I must admit, I am not totally shocked by this study, and it confirms what every parent knows: Getting your baby to sleep, and making sure that parents are also able to sleep, is a huge issue for everyone. People do what they feel like they must do just to get through the night. It is survival mode for parents. The tragedy lies in the fact that survival for parents can be critically dangerous for babies.

What I take away from this study is a humbling reminder that it is hard to be a parent. It’s easy for me to talk about things and provide recommendations based on the best available science. People will take that information and do what they need to in order to make it through a day and night. Armed with this information, I can help acknowledge the challenges, and help parents do the best they can as a part of an honest conversation, as opposed to a sermon.

I often think back to that night in the ER, to the sadness and powerlessness I felt as a physician, and as a person, to prevent the senseless loss of a beautiful baby. As I reflect on that, I also reflect on the fact that every year, more children die from sleep-related deaths (most of which are associated with unsafe sleep practices) than they do from all of childhood cancers combined. Crazy, right?

We know what we should do, but we also, sadly, know what actually happens sometimes. I encourage you to read through the recommendations below and share them with your friends and family members.

What you can do, as recommended by the American Academy of Pediatrics:

  • Place your baby to sleep on his back for every sleep.
  • Place your baby to sleep on a firm sleep surface.
  • Keep soft objects, loose bedding, or any objects that could increase the risk of entrapment, suffocation, or strangulation out of the crib.
  • Place your baby to sleep in the same room where you sleep but not the same bed.
  • Breastfeed as much and for as long as you can.
  • Schedule and go to all well-child visits.
  • Keep your baby away from smokers and places where people smoke.
  • Do not let your baby get too hot.
  • Offer a pacifier at nap time and bedtime.
  • Do not use home cardiorespiratory monitors to help reduce the risk of SIDS.
  • Do not use products that claim to reduce the risk of SIDS.

For details and additional tips to reduce the risk of SIDS, visit healthychildren.org or talk with your family’s provider.

 

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

 

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

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