‘Grass Strong:’ Andy’s Doernbecher story

In December 2014, a sneaker wave hit 10-year-old Andy Grass and his brothers while visiting Rockaway Beach, Ore. The boys jumped on a log to avoid the sneaker wave, but Andy fell and the log rolled on top of him, resulting in multiple serious injuries.

Below, Andy’s 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.

***

Our world was forever changed on December 24, 2014. And while our story will be told with a happy ending, it began with the most terrifying experience we could have ever imagined. It has been 18 months since Andy’s accident, but the memory of finding our son trapped under log is hard to erase from our memories. After we were able to dig him out from under the log and secure him to safety, he rested calmly in his mother’s embrace until the ambulance arrived. With broken bones all over his body and injured internal organs, Andy was able to save his last breath until he arrived at the hospital. As his second lung was collapsing and his world was about to go dark for many days his final words were, “What did I get for Christmas?”

I will never forget the words from his trauma doctor at OHSU Doernbecher when we arrived at the hospital that evening. They were: “Andy has a very good chance of surviving if he makes it through the night.”

“IF?”

The words were impossible to process. My wife and I struggled with the reality of the accident for 24 hours – from shock, to disbelief, to immense emotional pain. In the early hours of December 25 – Christmas Day – my wife, Anna, posted a message on her Facebook profile. It simply said, “Andy has been in an accident. Please God, let him live.”

From that moment on, the outpouring of support for Andy from family, friends and even complete strangers is what kept up our strength for the next three weeks in the hospital. We received hospital visits daily, meals for our family and enough words of encouragement to last a lifetime. The support came from school teachers, church friends, our Murrayhill Little League baseball community, the doctors and nurses at Doernbecher, and so many others. In particular, his Aunt Peggy (who ultimately succumbed to breast cancer at age 36 – six months after Andy’s accident) was a tremendous source of inspiration and comfort as they both battled their own situations.

When Andy was released from the hospital we were told his recovery could take up to two years or longer. Over the last 18 months he has endured more doctor’s visits than any kid deserves and has been through at least 100 physical therapy sessions. He went from bed, to wheelchair, to use of a walker, and then slowly to unassisted walking and now running.

His progress is a testament to his positive attitude, his “never give up” mentality, and his physical therapist (Kandice at ADAPT Training), who gave him the strength and encouragement on the rare days he couldn’t find it himself.

Andy is now back to playing with friends, hitting baseballs and shooting jumpers on the basketball court. Working with Nike and OHSU Doernbecher as a Doernbecher Freestyle patient-designer has been a wonderful time of reflection and healing for Andy and for our entire family as we continue to remain “Grass Strong.”

Learn more about “Grass Strong” and how the Grass family’s community rallied around them here (via KOIN News). Then, get to know 11-year-old Andy and the rest of this year’s incredible Doernbecher Freestyle patient-designers. We hope we’ll see you at this year’s collection reveal and auction on October 28!

Laundry detergent packets: convenient or catastrophic?

If I could describe the emotion in one word surrounding my first pediatric ingestion admission, it would be fear. On all levels. We were admitting a 3-year-old male after he accidentally ingested a laundry detergent packet. There was fear of the complications, but most notable, there was fear of the unknown. The toxic effects of laundry packet ingestions at that time were minimally understood. This was a new phenomenon. And as a newly minted resident, I also had a sense of uncertainty and fear.

In true first-year resident fashion, I went to the quickest, most reliable online resource available to me. I wanted to be prepared for all possible complications. As one would expect, I had the usual first-year resident jitters, however, my nervousness grew as I continued reading down the page. I had heard about laundry detergents packets; they were deemed as convenient and innovative without the mess. Laundry detergent packets, however, took on a new meaning that evening.

If ingested, I read, the highly concentrated packets can lead to vomiting, oral burns and swelling, respiratory distress and even respiratory failure – not to mention the neurologic impacts such as seizures, lethargy and, worst-case, coma. On the other hand, if the package breaks, they are likely to explode in the child’s face with risk of corneal abrasion and damage to one’s vision. The following day, my patient underwent an urgent upper endoscopy revealing a significant esophageal burn carrying the life-long risk of esophageal scarring. Unfortunately, that evening was not my first encounter with the hazards of laundry detergent packets.

***

The above story is a common one and one that has been echoed around the country. Ever since their introduction to the U.S. marketplace in 2012, laundry packet exposures have occurred at astonishing rates. In 2014, Smith et al. published a study in the Journal of Pediatrics outlining the trends in laundry packet exposures and risks associated with such. Over the course of one year (March 2012 to April 2013), there were more than 17,000 laundry packet exposures [1]. This represented a more than 600 percent increase in the number of monthly exposures. A subsequent article published by the same authors describes similarly daunting figures with a 17 percent increase in laundry packet exposures in the following year, 2013 through 2014 [2]. This 17 percent increase is despite mutually agreed upon voluntary safety standards by manufacturers. Of most concern, the majority of these exposures are occurring in young toddlers under the age of 3. Not only are these packets easily accessible, they are brightly colored and bite-sized; the perfect combination for a newly walking, explorative toddler.

As I enter into the third and final year of my pediatric residency training and prepare for a career in pediatric gastroenterology, this problem has taken on a meaning of its own. I have come to understand the role of advocacy and the inherent responsibility we as pediatricians carry to educate parents and families. Herein lies the spark for our most recent efforts at OHSU: a call to action to Pass on Packets and buy traditional laundry detergent for those with children under the age of 6 years. While this endeavor feels insurmountable, we are banding together with fellow pediatricians nationwide to disseminate this message, with the hopes of driving change and saving lives. Change must begin somewhere, and I hope that somewhere is in Portland. On June 7, Doernbecher is launching a social media campaign to #PassOnPackets – and we hope you’ll join us! (Details below.)

 

Katelyn M. Saarela
Resident in Pediatrics
OHSU Doernbecher Children’s Hospital

 

 

How to participate in #PassOnPackets:

Developed at OHSU Doernbecher Children’s Hospital, “Pass on Packets” aims to raise awareness of the health risks associated with commercially available detergent packets.

Take the pledge to pass on packets by sharing one (or more!) of the below infographics on the social media platform(s) of your choice and use the #PassOnPackets hashtag. Also, join us from 11 a.m. to noon PDT on Tuesday, June 7 for a #LaundryPackets Twitter chat, hosted by @PreventChildInj.

Facebook/Twitter graphics (click to download):

 

 

 

 

 

 

 

 

 

 

 

Instagram graphics:

 

 

 

 

 

 

 

 

 

 

Access more graphics and resources here.

Graphics courtesy of Carolyn Kach

Studies cited
[1] Valdez AL, Casavant MJ, Spiller HA, Chounthirath T, Xiang H, Smith GA. Pediatric exposure to laundry detergent pods. Pediatrics. 2014;134(6):1127-35.

[2] Davis MG, Casavant MJ, Spiller HA, Chounthirath T, Smith GA. Pediatric Exposures to Laundry and Dishwasher Detergents in the United States: 2013-2014. Pediatrics. 2016;137(5)

Marijuana safety

The Oregon Poison Center at OHSU has seen a significant increase in the number of reported marijuana exposures in the past three years. To help ensure the safety of all Oregonians, the poison center has developed the following safety recommendations around marijuana products:

  • Keep marijuana products out of the reach of children
    • In Oregon, the use of marijuana is legal for adults 21 and older.
    • All marijuana products, medicinal or recreational, should be locked up and kept away from children. This is especially important with marijuana edibles, which are easily mistaken for regular baked goods or candy.
    • Educate your family about various marijuana products and their effects, even if you do not use them. A friend or neighbor may inadvertently leave their belongings within a child’s reach.
  • Understand edible marijuana dosage
    • Marijuana edibles can have a high potency, but may take longer to have an effect – up to 3 hours. To avoid overconsumption, users should take a slow approach and start with small doses.
    • In Oregon, a single serving of THC – the active ingredient in marijuana – is 5 milligrams. However, much like regular food items, marijuana-infused products may offer multiple servings. Users should carefully read product labels to avoid overconsumption.
    • THC may negatively interfere with some prescription drugs. Before consuming, users should consult their pharmacist or doctor to determine possible prescription drug interactions with marijuana and marijuana products.
  • Recognize the symptoms of overconsumption
    • The health impacts of marijuana overconsumption vary, and children are likely to be more susceptible to the effects than their adult counterparts. Signs of overuse may range from dry mouth and disorientation to mental health issues, racing heart rates, difficulty breathing or even coma.
    • If you suspect symptoms of accidental child exposure, or adult overconsumption, immediately contact the Oregon Poison Center at OHSU: 1-800-222-1222.

 

 

From patient to med student: Shira’s Doernbecher story

National Cancer Survivors Day is a celebration for those who have survived, an inspiration for those recently diagnosed, a gathering of support for families and an outreach to the community. Below, Shira Einstein, a second-year medical student at the OHSU School of Medicine, shares her powerful Doernbecher story.

Many of us who decide to go into the medical field do so bearing scars. Mine happens to be about 1-inch-long under my left collarbone, where a port-a-cath was placed nine years ago in order to administer my IV chemotherapy treatments.

I was a freshman in high school when I was diagnosed with Hodgkin’s Lymphoma, stage 2A. After months of frustrating symptoms and an MRI scan, I sat in a meeting room with my parents on either side of me and a team of oncologists on the 10th floor of OHSU Doernbecher Children’s Hospital on March 9, 2007, I was told I had cancer. One of the people in the room was Dr. Linda Stork, who continues to be a blessing in my life.

As many of my friends and family members would attest, I am obnoxiously optimistic and positive. If you want someone to mope with about the deep dark troubles of the world I am not your girl.

That’s how I dealt with cancer. I swept the fear, pain, anxiety and confusion under the rug to deal with at a later time. This was, for the time being, a helpful coping mechanism for 15-year-old bald cancer patient me, who tried to hold onto every piece of sunshine during those dark months. My family, friends, nurses and doctors caught onto this strategy. They also did not take long to realize that I was extremely curious about the science and medicine of my disease. My treatments became lessons about cells and the human body.

Dr. Linda Stork and Shira

I also recognized that I had incredible privilege to have access to excellent medical care, an understanding that is painfully validated each time I travel to impoverished communities locally and globally, witnessing the suffering that others experience under similar circumstances.

There was only one journey for me to embark on, I decided. I was going to become a doctor.

This August I will officially be eight years cancer free! I am finishing up my second year of medical school at OHSU, and celebrate being healthy each day by striving to learn as much as possible and provide compassionate care to each patient I have the privilege of meeting. In the same rooms where I once was the patient, it is now my turn to provide information, strength, and hope when I can. For me, being a cancer survivor comes with a responsibility to love my life and to invest in the health of others. It is a privilege to embark on a career path where I will have that opportunity each day!

LLS Woman of the Year: Shira!

LLS Woman of the Year: Shira!

 

The battle of a lifetime

National Cancer Survivors Day is a celebration for those who have survived, an inspiration for those recently diagnosed, a gathering of support for families and an outreach to the community. Below, Elaine Brockhage shares her Doernbecher story and how her diagnosis at age 12 continues to impact her life today.

Cancer is something you fight. The patient himself fights. The patient’s family fights. The family’s friends fight. Even good Samaritan strangers join in the battle. When I was 12, I got diagnosed with a malignant brain tumor, and out of all the advice I got (both the good and the questionable) one theme rang true: to fight.

“Fight like superwoman.” they told me.

“Fight like a flower, growing out of cement.”

“Fight like a survivor; fight for your life.”

So I fought, and so did those around me. Of course, I must admit that I wasn’t always aware of this raging war. First, I was so drugged out half the time that I didn’t really know what was happening. Second, I was not thinking about the fact that I needed to fight. I was thinking about how I didn’t feel good, and wanted to feel better. I was thinking about returning to my former life, exactly as I had left it.

Treatment lasted a little bit over a year, and then I went into remission, and then survivorship. For my follow up care, I go to Doernbecher Children’s Hospital. I’m 20 now, and enrolled full time at George Fox University. A lot of the time, it feels like I lead sort of a double life. I am a college student, dealing with stress that comes from being in school, meeting (or not meeting) homework deadlines, and learning how to live with roommates. The other part of me goes back to the hospital for check-ups and deals with the post effects of treatment (messed-up balance, decreased brain function from the radiation, and unstable eyes, to name a few).

Half of me is so grateful and blessed to be alive and walking, able to see things with single, 3-D vision. I can learn things formerly deemed impossible for brain cancer survivors to learn, and I have the ability to go places where we couldn’t have gone before.

But the other half of me is bereaved and hollow. I struggle with some things that other people never will, and I feel overcome by self-pity. I remember other kids who were in the hospital with me, and guilt sets in. And these feelings are difficult to voice, because they are often perceived as wrong, and met with criticism.

And I’m fighting against this second half of me. I fight against envy and grief, feelings of isolation and paranoia. I fight to find out who the new, post-cancer Elaine is, and I fight to accept her. I feel this fight more than I ever did when I had cancer, and like anyone who is facing a difficulty, it’s important to remember what keeps me going and why I don’t just give up.

I’ve thought about it a lot, and I think there are three main things. One of them is my faith, which gives me direction and a goal. The second is other people, because when I can laugh and have a good time with someone who is close to me, or listen and learn from someone else’s story, then I know that I am living. The last one is my attitude. It’s when I can take steps to help myself, and when I can look past the troubles that I am facing now, and on to something better. And then I know that even though this battle is far from over, it will still be won.

 

 

‘Story Beads’ help tell oncology patients’ stories at Doernbecher

At Doernbecher, every bead has a story. Strung together, these beads take on an even greater meaning: helping oncology patients conceptualize, cope with and share their cancer journeys.

The Story Bead Program began at Doernbecher in 2003 and is supported by the Doernbecher Child Life program.

Every year, there are about 250 newly diagnosed cancer patients treated at Doernbecher. If a child is interested in participating in the Story Bead Program, they are given an opportunity to capture their own medical journey – one bead at a time.

Each “starter string” begins with a bead symbolizing the patient’s unit and letter beads spelling out the patient’s name. From there, they add beads that represent their procedures, their milestones and their emotions along the way. Some examples:

  • A crab bead: Making someone smile
  • A purple heart bead: A transfer to the ICU
  • A blue bead: A sleepover in the hospital
  • A light green bead: A good day
  • A yellow bead: A bad day

Patients can also receive beads for specific procedures, “pokes” and transplants.

The Story Bead Program is intended to record the milestones of the treatment process. It can be a long and difficult journey, and the beads are a tangible way of acknowledging the challenges along the way.

“There is a personal transformation that happens when the joy of creating becomes larger than the pain,” said Peggy Adams, a Child Life specialist who helps oversee the program. “The Story Beads become a badge of patients’ accomplishments.”

Some of the beads were added by request: For example, a patient suggested adding the clock bead to symbolize patience. Another patient asked for a frog bead to celebrate learning to swallow pills.

Another patient suggested replacing the “hair falling out” bead, which used to be small and brown, with a big, bright orange bead with a smiling face to represent something that is a “BIG deal.”

When they go back to school, patients receive an apple bead to commemorate the milestone. Some even bring their story beads with them to show-and-tell to help their friends and classmates understand what their treatment process was like.

Many patients continue to add beads to their story when they come in for visits after therapy has finished.

“Our patients make their stories as they go,” said Kathy Perko, a pediatric nurse practitioner who helped bring the program to Doernbecher. “The beads help tell every individual child’s story.”

Sometimes, it helps grown-ups understand the child’s experience better, too. Kathy remembers a 6-year-old patient who was discussing her “bad day” beads, one of which represented her leukemia recurrence.

“She said, ‘One time I was crabby with my mom. Another time my cancer came back. And another time I just had a rough day.’ Her way of thinking about what a bad day was is pretty humbling – it really puts things back in perspective,” Kathy said.

Meet Dr. Maggie Stoeckel

We sat down with pediatric psychology fellow Maggie Stoeckel, Ph.D., to learn more about her role at OHSU Doernbecher Children’s Hospital and how she and her team work together to help patients and families.

What do you do at OHSU Doernbecher? 

I’m completely embedded in the GI service and am available for all patients who have any kind of psychosocial needs. My primary role is working with kids that have chronic illnesses – the patients I see the most have inflammatory bowel disease (IBD), chronic abdominal pain, liver disease or encopresis.

As kids are growing up, it’s hard to manage chronic illnesses on top of normal developmental challenges. As a result, our patients can be vulnerable to depression and anxiety and might experience difficulty taking medication or difficult family dynamics. My job is to see the patient and family as a whole and address all of their needs.

What’s unique about this role? 

We have a multidisciplinary team that consists of GI providers (including doctors, nurse practitioners, nurses, medical assistants, a social worker and a dietitian) and we work together on a daily basis in clinic. Our goal is to provide holistic care.

I really enjoy working in a multidisciplinary team; we’re always learning from one another and it makes it exciting to come to work every day. No two days are the same!

What’s your favorite part of your job? 

Just seeing the patients every day – it’s really rewarding to see kids smiling after going through some significant challenges with their health.

What encouragement would you give to patients and families? 

It’s normal to have strong emotions around chronic illness. I also want families to know I’m here as a resource in the good times and the bad times. Prevention is really important – we do so much better with preventing crises (as opposed to intervening when things get really bad). That’s one reason why it’s beneficial to have an integrated model – families meet me from the get-go and know that I’m part of the team.

The force is strong with this one: Justin’s Doernbecher story

Earlier this year, OHSU Doernbecher Children’s Hospital patients, family and employees were treated to a special visit from Star Wars characters from the Cloud City Garrison thanks to the hard work of 14-year-old Doernbecher patient Justin. Below, Justin’s mom, Joanna, shares her son’s story and why this project meant so much to their family.

***

When he was only 3 years old, Justin was diagnosed with Type 1 diabetes. We had been noticing that he was urinating frequently and was thirsty all the time. Coincidently, I had heard about the symptoms of Type 1 diabetes from a co-worker of mine, two weeks prior to Justin’s diagnosis. When Justin began exhibiting those same symptoms (extreme thirst, frequent urination, loss of weight, etc.), I knew we had to get Justin in to see his pediatrician.

They initially did a urine test, and the nurse came back in the room and stated that Justin had sugar in his urine. They then did blood work to confirm the diagnosis of Type 1 diabetes. Because he wasn’t sick, Justin wasn’t really aware of what was going on – but my husband and I cried when we heard the diagnosis. As parents, we were scared. At the time, we lived south of Eugene and Justin’s pediatrician immediately sent us up to OHSU Doernbecher Children’s Hospital.

Doernbecher welcomed Justin and our family with open arms when we arrived. We met with many people at the time of his diagnosis, including his new pediatric endocrinologist, Dr. Bruce Boston. Justin’s child diabetes educator, Joannie Kono, also met with us to go over all of Justin’s insulin needs and talk through what life would look like with Type 1 diabetes.

We were in the hospital and all of the nurses, volunteers and doctors were extremely supportive. Justin remembers having his blood pressure checked because the cuff had dinosaurs on it – every time his blood pressure was taken, Justin said it felt like the dinosaurs were giving his arm a big hug. The nurses thought that was cute!

There were many wonderful volunteers that came in to play with Justin so that my husband and I could take time to learn everything there was to learn about Type 1 diabetes and our new life with this disease.

Everyone involved in Justin’s care was compassionate, and it made our time there much more enjoyable, given the circumstances. He’s been going to OHSU for his diabetes care since his diagnosis and he continues to see Dr. Boston and Joannie Kono.

Doernbecher Children’s Hospital is a wonderful place to be, with a lot of amazing, caring people. I would tell other parents that they’re in the best hands at Doernbecher. The doctors, nurses and volunteers are extremely compassionate, giving individuals and the staff made our time at Doernbecher memorable.

When Justin was planning a community service project, he didn’t even have to think twice about what he was going to do. Doernbecher has been a place he’s remembered since his diagnosis, and he wanted to find a way to give back to the hospital that gave to him and to our family in his time of need.

Justin wanted to bring joy to the patients and families at Doernbecher – and he LOVES Star Wars – so he emailed the Cloud City Garrison (a chapter of the 501st Legion of Stormtroopers) to see if they’d be willing to volunteer their time to help out. Justin explained his service project and requested support from Target and Lowe’s, which both donated toys to hand out to Doernbecher patients and families. It was a great success!

On the big day, Justin got great satisfaction in seeing the looks on people’s faces – children, families and employees – when they saw that the Star Wars characters were coming in to bring joy to patients and families. He says “it was a joy to my heart” and wants to do this community service project every year.

Learn more about Justin’s community service project here.

Let’s talk about gender

This article was written by Katie Vaughan and illustrated by Sol Linero. It originally appeared in the Portland Monthly 2016 Kids’ Health Annual magazine. 

When kids are bombarded with messages about how girls and boys should act, families can help cut through the noise with a conversation.

With gender in the headlines – toy aisles ditching their pink and blue labels, the shocking pay gap for our Women’s World Cup champions, the evolution of Caitlyn Jenner – the complicated topic can feel like a news trend of the day. Of course, ideas about gender and its role in our lives, and in children’s development, are not trends at all. We’ve been carrying them around since we were born.

“The perception of gender impacts everyone throughout their lives, because of what gets imposed on us about gender roles, gender norms and societal expectations,” says Amy Penkin, program coordinator of the OHSU Transgender Health Program.

What’s new – and healthy – about today is the dialogue.

The definition of gender is still fluctuating in the medical community, but here’s the general idea: Sex is anatomical and chromosomal. Gender is how you identify psychologically or emotionally.

“Gender identity is about the inner sense of self. It’s about how we perceive ourselves,” says Dr. Kara Connelly, a pediatric endocrinologist at OHSU Doernbecher Children’s Hospital. Gender can be reflected in the way we think, feel, behave and present ourselves.

Children absorb ideas about gender from all directions. As a parent, it’s easy to be intimidated by the lingo or overwhelmed that everything children see and hear about gender could impact their development. So we asked child and family health care professionals how parents can tackle gender issues and raise healthy kids – who aren’t burdened by unhealthy stereotypes.

 

Finding their way

Children start to identify gender at a very early age. In most cases, a child will start to develop their own gender identity as young as 3. As they grow, children want to understand how they fit into the world, and their gender identity is an important part of that development.

Sometimes, what a child determines to be their inner identity conflicts with how society expects them to behave, which can be damaging to their sense of self.

“It creates a lot of internal conflict if a child’s beliefs about who are they are differ from the outside world’s acknowledgment of that identity,” says Dr. Naomi Fishman, a child and adolescent psychiatry fellow at OHSU.

It can be as simple as a girl feeling bad because the toys she wants to play with are considered “boy” toys or as complex as a child being ashamed and confused because their inner gender identity doesn’t match their outer appearance.

Kids can take in a lot of ideas just by observing what their parents say and do, but constantly worrying about whether you might be passing on judgments or reinforcing stereotypes will drive parents crazy. Fortunately, the solution is simple.

Dr. Fishman says it starts with taking time to listen: “If you want to support your kids in exploring their gender, be genuinely curious and spend time with them.”

If you’re worried about using the most PC terms and asking all the right questions, don’t be.

“You don’t need to interrogate them,” says Dr. Fishman. “Just be open, available and supportive. Allow kids to be honest about exploring their gender identity.”

 

Pink footballs, blue dolls

A lot of the messages children receive about gender come in the form of societal stereotypes, and it starts before we’re even born. Picture a standard baby shower, with everything from decorations to gifts to the cake in either pink or blue.

Kids start to notice these stereotypes right away. If your child repeats some conventional idea they’ve picked up somewhere (“girls play with dolls and boys play with trucks,” “pink is a girl color,” “boys are better at science”), Dr. Fishman advises taking it as an opportunity to talk openly: Ask your child if they believe it’s true. Encourage kids to talk about how they feel about a certain color or toy, instead of focusing on what someone else told them. You don’t need to be laser-focused on the minutiae of gender stereotypes and how you (or your friends or teachers or coaches or movies or…) might be passing them on. If you have an open mind and keep the conversation flowing, you’re on the right path.

Internalizing gender stereotypes can affect more than just the toys children play with; they can be especially damaging when it comes to body image.

“Kids today are inundated with images of what is supposed to be beauty and strength and power and desirability,” says Dr. Craigan Usher, program director of Child and Adolescent Psychiatry at OHSU Doernbecher. “We’re seeing the impact of that in a lot of ways, like the increased rate of disordered eating in the last 20 years or so.”

The best thing parents can do to help children deal with body issues and other negative effects of stereotypes is to make space for the multitude of ways in which someone can be a man or a woman.

“Expose kids to the different ways that people can dress and think, feel and look,” says Dr. Usher, adding that Doernbecher also offers a variety of psychiatric and therapeutic resources for adolescents who are struggling with gender identity or body image.

So while the repercussions of stereotypes and how they play into gender identity can seem limitless, the overall advice from health professionals is this: Don’t worry too much! Stay open-minded. Listen. Encourage kids to express themselves honestly and show interest in what truly makes them happy. And, hey, maybe start a family petition to address the pay gap for those Women’s World Cup athletes.

 

On gender’s spectrum, let kids settle where they’re comfortable

If children start to determine their gender identity as young as 3 years of age, that means that some children might realize early on that their gender identity doesn’t match their external appearance. Children easily pick up on gender stereotypes, and our society is constantly reinforcing ideas about how a certain gender should look, think and behave. That can lead to a lot of confusion and shame for children who feel pressured to look or act in a way that doesn’t line up with how they feel.

Every person is unique, and every person’s gender expression is unique. That also means each path to a comfortable gender identity is different. In their quest, some people may choose to change their name, style their hair a certain way, or be called by a different pronoun. Others might choose to undergo full surgical transitions. No matter the path, the earlier a person can start this process, the easier it will be in the long run.

“If kids are supported in their quest to explore their gender identity and expression from an early age, they can often be saved from years of emotional and psychological distress,” says Dr. Connelly.

As with most other issues families face, the path to raising a healthy and happy transgender child starts with an open mind.

“When you accept your child’s expression early on and allow them to live that role, your child can live a much more anxiety-free life,” Dr. Connelly says.

Still, parents don’t need to jump to conclusions: “A boy who wants to wear dresses for a while is very different from a boy who says with certainty, ‘I am a girl,'” she notes. “All children should be allowed to express their identity in a way that makes them feel comfortable.”

Gender transition may be in the public eye more these days, but it’s certainly not new. “We’ve been helping patients transition for decades,” Dr. Connelly says. “The hormones and surgical processes are not new.”

But with more public awareness comes, hopefully, more acceptance and more connections. Transgender youth have higher rates of anxiety and depression and a higher risk of suicide than cisgender children (those whose internal gender matches their sex at birth). They are also more likely to face bullying and abuse.

“Transgender kids really benefit from support and meeting other gender-diverse kids and families who are going through the same thing,” says Dr. Usher. “It helps to know that there are other people out there confronting the same issues and that there is a path for them.”

In 2014, OHSU created a work group devoted to improving transgender health services. The group hopes to better support children and families who may be struggling with gender identity considerations. Their aim is to improve access and links to a variety of resources, including mental health consultations, ongoing individual or family therapy support, hormone treatment, physical transitions and more.

Dr. Usher believes the increasing health resources for transgender youth and their families mean we’re moving in the right direction, but the psychology of gender transition is still a changing field, with still more steps to take in our growing understanding. Much of the study done on the topic in previous decades was heavily influenced by societal constructs.

“Even the term ‘gender dysphoria,’ which is now included in the latest psychiatric diagnosis manual, is problematic,” says Dr. Usher. “It implies that a child or teen needs to be sad because their internal gender doesn’t match their external sex; it doesn’t leave room for someone to be happy or proud.”

Additional resources

  • OHSU Transgender Health Program: People have come from around the world to access OHSU’s staff and facilities.For more on its Transgender Health Program, email transhealth@ohsu.edu or call 503-494-7970.
  • TransActive Gender Center: Community-centered local network that supports transgender and gender diverse young people and their families.
  • Outside In: A Portland non-profit dedicated to homeless youth, Outside In also offers LGBTQ-focused services.

Under pressure: For kids with hypertension, the time to make changes is now

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

While in the past high blood pressure in children has usually been considered a secondary symptom of something else, like kidney or heart disease, today children, like adults, are increasingly experiencing issues associated with being overweight.

According to Jennifer Huang, M.D., a pediatric cardiologist at OHSU Doernbecher Children’s Hospital, “It’s becoming more and more common for kids to have hypertension or high blood pressure even without the primary causes.” And every year this number goes up.

Hyperlipidemia, a condition defined as a high presence of fats circulating in the blood, frequently accompanies high blood pressure and is associated with obesity. “Some children have the disease because it’s familial,” explains Dr. Huang, “but most of the kids coming in are significantly obese.”

The good news is that children with hypertension aren’t condemned to a life of high blood pressure. When lifestyle is modified before adulthood, blood pressure can be “cured” in kids – as long as those changes are maintained.

“Change is easier with kids than adults,” Dr. Huang says, “but if you look at the kids with hypertension and hyperlipidemia, their parents have hypertension and hyperlipidemia because they already have that lifestyle.”

Dr. Huang says she and her colleagues – such as Laurie Armsby, M.D., also a pediatric cardiologist – can work to assist parents trying to alter their children’s lifestyle through a more holistic program, including children’s gym activity and consultation with a dietician.

Medication can also be helpful for controlling blood pressure, though the diuretics used as a primary line for adults aren’t the go-to for children. Pediatricians often prefer ACE inhibitors, which target the kidneys as they adjust blood pressure through many different hormones and markers.

“It’s a feedback loop. When you have high blood pressure a long time, your kidneys become intolerant to that, and they react the same way as someone with normal blood pressure,” Dr. Huang clarifies. ACE inhibitors work by blocking one of these kidney hormones to help lower blood pressure, stabilizing the feedback loop. Younger children have lower blood pressure targets than older children, and the scale varies based on age and height percentile.

But just like high blood pressure in adults, hypertension in children often displays no symptoms and is found during routine screenings. “In a cardiology clinic we check blood pressure with every visit,” Dr. Huang says, noting the contrast with a standard wellness checkup: “Especially with younger children, they’re not getting their blood pressure checked on their primary care visit.”

Parents who suspect hypertension – or simply want reassurance that their child doesn’t have a problem that needs addressing now – should ask their pediatrician to break out the blood pressure cuff.

If you’re concerned about your child’s blood pressure, talk to your pediatrician or call (503) 346-0640 to reach the pediatric cardiology program at OHSU Doernbecher.

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