Preventing Pediatric Pain: A Longterm Win Win

 

imgres

Amy Baxter, MD, the queen bee of pediatric pain prevention

“I believe established medicine is courting a public health disaster, not because of costs or lawsuits or one dumb publication from a scientist gone bad, but because of a national Pavlovian failure of empathy.” — Amy Baxter

Who is Amy?

“Emergency pediatrician Amy Baxter noticed a disconnect in health care: caregivers often cause pain to solve a problem, but for many patients, pain is the problem. While researching the causes and consequences of untreated pain, she invented Buzzy, a bee-shaped device that physiologically takes the sting out of shots using high frequency vibrations and cold. Amy is the director of Emergency Research for Pediatric Emergency Medicine Associates at Children’s Healthcare of Atlanta, Scottish Rite. In the academic world, she is known for creating and validating the BARF nausea scale for children, and an algorithm to measure the timing of child abuse. Honors include a 2011 Medical Design Excellence Award, Georgia Bio Innovative CEO of the Year, and a Wall Street Journal “Idea Person.”” (TEDMED, retrieved November 7, 2016)

In a recent conversation with Dr. Baxter, I asked her about her war on pain, and her appreciation for the field of Child Life.

What are your beliefs about pediatric pain and the need to prevent it?

I take seriously the oath to First Do No Harm.  When iatrogenic procedural pain causes people to fear healthcare later in life, we have done harm.  When we withhold pain management in the trauma bay, we do harm. I have always been suspicious when we do something without pain management to someone small enough to hold down, but we sedate or give analgesics when they’re big enough to fight back.

What do you believe children need most in the medical setting? 

Children need to know they’re safe.  Therefore, parents need to know we’re doing everything we can to make them not hurt.  Something may happen that isn’t comfortable, but kids need to trust that they’ll be warned.  If there isn’t any way to make it more comfortable, they need to know that their care team and parents are all agreeing and supporting what is best for the child. Even very young children know crap happens; what is scary is when the people who keep their world stable are visibly angry, confused or afraid.  Pain isn’t the worst thing that happens, it’s pain when their parents seem unable to protect them. When I fix a nursemaid’s elbow or a patella, I offer analgesics, but let parent and child know I can make them feel better FAST right now but it is going to be uncomfortable for 5 seconds or less.  Or they can wait, but it will still be a little uncomfortable.  Most opt for fast, but that control and honestly let them know I’m thinking about not hurting them first and foremost.

Why is pain prevention important for very young children?

Kids who are persistently afraid of needles have healthcare consequences. They grow up to be adults who don’t get flu shots, or start insulin when they need it, or donate blood.

What motivates you in uphill battles with sensitizing other medical professionals to the necessity of pain control for infants and children? 

I really believe that truth carries its own coercion.  If people who want to heal see the truth of the importance of pain relief, they eventually will align their behaviors with that belief.  No one wants to be an outlier in medicine.  Once one person sees the truth, that pain relief matters, they can’t unsee that.  Eventually the obvious will become apparent to everyone – we can make the entire system work better when we don’t hurt children.

How did you learn about Child Life?

I know this is hard to believe, but I can’t remember not knowing about Child Life.  I’m sure we didn’t have Child Life in pediatrics when I was training, but perhaps because it always seemed such an obvious need when I first began seeing Child Life specialists, perhaps I assumed they always been someplace, just perhaps not in my department.  I carried distraction toys on my stethoscope and in pockets since I began training, it just seemed logical.  My oldest was born my first year of residency, so I had a natural connection to what worked for different ages from the beginning of my training.

Resources for doctors, parents, nurses, and child life specialists

In this TEDMED Talk, Amy speaks to the increase in vaccinations in early childhood, and the impact it has in increasing needle fears later in life.  Visit her  Buzzy website to find out more about the most cost effective way to prevent needle pain in infants and children.
buzzy-child-life-halloween

The Child Life Maker Movement: Loose Parts Impacting Healthcare

img_1347

What happens when you cross a child life specialist with loose parts? Creativity, to say the very least. Specialists have been using loose parts to make the medical world more accessible and friendly for children and families since the beginning of our profession. They combine medical supplies (tubing, gauze, rubber gloves) and household items (paper towel rolls, pipe cleaners, paper clips, felt) to create everything from customized dolls that reflect a child’s medical situation, to a glove-o-phone to help children pass breathing tests. Simple and complex inventions have aided children in making meaning out of their medical experiences.

 

img_1316

Now, with the Maker Movement, child life specialists have invaluable opportunities to join brains with other disciplines seeking to improve patient experience and speed recovery.   Bank Street College Child Life alumnae Jon Luongo and Kelly Segar, and children’s book author Anastasia Higginbotham rolled up their sleeves to join the Maker Faire at The New York Hall of Science this past weekend. They joined nurses, doctors, medical technicians and fellow inventors in the Health Maker tent on this brisk and cloudy autumn day.

As children and caregivers meandered through the exhibits, .the specialists shared information about how to make pediatric hospital stays more manageable, less stressful, and more fun. As Jon demonstrated the glove-o-phone, kids jumped at the unexpectedly loud honk it made.

img_1326

 

Exclamations of “Ewww gross!” were followed by attentive curiosity as Jon explained the purpose of the vial of “blood soup” on the table.

 

img_1317

Families spontaneously grabbed colorful neon strings and engaged in string play, a simple game that crosses generations, culture and language around the world.

img_1332

Kelly demonstrated her Barium Bear, “Barry”, developed to support children receiving barium enemas and scans. She used simple circuitry that she learned from a Hospital Play Specialist in Japan to illuminate the pretend scan.

 

img_3265

At nearby tables, radiation techs and doctors showcased how legos can be used to build mini MRI, CT-Scan, and linear accelerator machines. When they are doll sized, they aren’t quite so scary. And when children aren’t as frightened, doctors can administer less anesthesia to their tiny patients, a win-win for everyone.

img_1312

Did you know that a A three-D printer can be used to make prosthetic hands for children who have lost theirs to birth defects, disease or accidents? And for a fraction of the cost of traditional prosthetics. And they aren’t just your run of the mill hands either. They are superhero hands! As I observed a three-D printer humming away at one exhibit, I wondered about what kind of mind came up with the idea of this machine. And then who had the amazing idea about the possible application of it in the medical world?

img_1338

Wonderful ideas start somewhere, and when we encourage children to explore and create, even in the medical environment, we are investing in their healing and in their future. The Maker Faire was an extraordinary celebration of the possibilities of the human brain. From low-tech to high-tech, creative minds came together in the Health Lab tent to hack medical problems and make the healing process more fun. If you want to get your maker on, I encourage you to find maker spaces near you Challenge your child life staff to a loose parts contest at the next departmental meeting. Jumpstart a health maker group in your hospital and invite staff from throughout the institution to collaborate. And don’t forget your best assets. Find every opportunity to include children in creative problem solving with loose parts. In and out of the healthcare field, children and adults all benefit when we connect with what Eleanor Duckworth called “wonderful ideas.”

images

img_1307

img_1345

 

 

 

 

 

 

 

 

 

Doll Ambassadors: Providing Comfort to Kids with Cancer

20160716-151336-bee-hdr_1_orig

Guest Blogger: Rosanna Bernstein – Founder of Bee Brave Buddies

When I had cancer and was going through chemotherapy, a white, curly haired stuffed poodle that one of my daughters gave me sat right on the pillow next to me at all times. I named her Gigi. Just looking at the quirky turned-up smile on this puppy`s face always gave me a feeling of comfort and made me smile.

I was diagnosed with Chronic Myelogenous Leukemia in 1998. I was in treatment for 3 years and was becoming sicker. A trial in its second phase for a new chemotherapy medication, specific for CML, now called Gleevec, was in its early stages at that time.  I was eventually accepted into this trial, and within several months I went into a remission. This chemotherapy was one of the first magic bullets, a medication targeted to treat the specific genetic mutation.  Although I still take a chemotherapy pill each evening, I have been so fortunate to be healthy and in remission to this day.

I was so grateful, that I decided I wanted to help others.

Through the years I have had several businesses: Yummy Gram, a gourmet basket company, Rosanna Hope Designs, a millinery and hand bag design company and Baby Bonbons, an online shop with vintage lace children`s clothing designs and accessories. During this time, I designed many original designs for baby blankets and matching pillows for the Baby Bonbons shop. I have always had a passion for art, beautiful laces and fabrics.

But, puppy Gigi always lurked in the back of my mind. I could still see that funny little face, and I got a warm feeling each time I thought about Gigi. I remember the soothing, inner peace I felt snuggling her. This feeling gave me the idea to combine my love of art and design with my desire to give back.

I combined my love for fabric and my whimsical children’s digital art drawings to design my original three Bee Brave Buddies dolls: Buddy Brave, a superhero doll for boys with magical powers, his twin sister, Bestie Brave, a superhero doll for girls, who is a true new best friend, and Catie Cuddles, a doll dressed in fancy lace who loves to cuddle and snuggle. I hope to use this same art process to design a line of Bee Brave Buddies Adventure books and other gifts for children.

My dolls were designed to become a new best friend to children who are in treatment for cancer or other childhood illnesses and who need a big snuggle and some magical secret powers to be brave. The three dolls are designed with beautiful bald heads. The girl dolls have special words printed on their long leggings: giggle, snuggle, love, dream, brave, cuddle, smile, laugh, hugs, play, dream, hope.

The dolls are also educational. An adult with cancer can use the dolls to explain hair loss and other treatments that children will face. Each doll comes with a matching hat or headband and the superheroes come with silky minky capes. The dolls have very soft plush pillow bodies to hug and love. Each doll comes in Caucasian or African American descent. Our dolls are printed and made in the USA. They are completely washable.

I have personally been giving my dolls to children with cancer since February of 2015. Bee Brave Buddies have been shipped to children across the USA and to several countries. We are excited to announce that we have now received our determination letter from the IRS and we are a 501(c)3 nonprofit. This will allow us to make and deliver dolls to children battling cancer across the country and beyond with your help and support.

 

What can you do to help? 

We are looking for doll ambassadors, an integral part of our team. They are like the generals in our army, helping us make big decisions: They locate hospitals in their area, make child life connections for delivery of dolls, are available for the doll presentations, help secure local press and manage social media regarding their particular hospital. Doll ambassadors also reach out to help us find local contacts to sponsor these boxes of dolls delivered to their local hospitals, either on a one-time basis gift or an ongoing monthly program.

Our new initiative, The Bee Brave Buddies of the Month Club allows a sponsor to send a box of ten dolls per month to a designated hospital. Our Christmas Holiday program encourages families or businesses to celebrate a holiday they will fondly remember, one in which they gave back to others. Our creative doll ambassadors put together teams from family, friends, businesses, corporations, church groups, school groups or sports teams that would like to rally for our cause. These are just a few examples of groups that can help us touch the lives of these children in a very profound way. Our dolls give the children comfort, courage and confidence. These seriously ill children only want to be normal and play! When the child smiles, the caregivers smile, and all of the medical staff smile. It is infectious! Our dolls provide these smiles when the children are hugging and loving them, much like my Gigi puppy provided to me.

9344858
Our mission is to put a Bee Brave Buddy doll in the arms of all children around the world in treatment or recuperation from cancer who need a hug to help these children feel brave and to provide emotional support to children and young adults with cancer and other serious illnesses. Any child battling cancer can receive a free Bee Brave Buddies doll to love.

If you would like to make a difference in the lives of these sweet children, drop by our web site www.beebravebuddies.com to learn more about our nonprofit and please join us today.

Warmly,

Rosanna Hope Bernstein

bbbbanner-960x270-for-weebly_2_orig

Less anesthesia – More play for MRIs

ilovemri
Erik Ranschaert and Ben Taragin

Dr. Benjamin Taragin knows a lot about what kids need when facing radiology scans. He has spearheaded the production of a miniature MRI model using toy building blocks, so that children can play about their experiences before and after scans. When I asked Dr. Ben about how this all came about, he shared the following narrative. We hope you will be inspired by his story and jump on board to help make his I Love MRI kits available to any child in need of an MRI.  Continue reading

Palliative Care: the Art of Companionship

4ee124073502a55f697fead96f86_r16-9_w630_h354_g3b847b58139e11e6bc7c0025900fea04

Photo by Ludvik Hradilek

Jiri  and Marketa Kralovec have been serving families facing illness and loss for many years. Their work through the Klicek Foundation in the Czech Republic has brought palliative care to parents and children who in their most difficult hours, crave witnessing and gentle care as a family unit. Below is a statement of their philosophy, their humanity threading through it like gold.  Continue reading

Get Ready to Play!

IMG_0062 (1)

Okay, so call me a nerd. Few things bring me more joy than teaching a subject that I love with a colleague who has even more passion and enthusiasm for the subject than I do. I have had the pleasure over the years of co-teaching with many wonderful and talented colleagues – Betsy Wilford, Elizabeth Laureano, Edna Garces, Karen Marschke-Tobier, Caitlin Koch and Jon Luongo, to name a few. In each of those situations, whether it was Sunday school, a therapeutic nursery school, graduate school, in another country, or at a conference, I became a better teacher within the partnership than I ever would have been alone.

And now, as I prepare for my upcoming gig at the Child Life Council’s 34th Annual Conference in Orlando, Florida next week, I celebrate the colleagues that I will be teaming up with.  Continue reading

Child Life Bibliotherapy

LogoOnTexture

 

Guest Blogger: Mary Pat Benning

 

Many child life specialists are familiar with the quizzical expressions that come when sharing their professional title and job responsibilities. Imagine that scenario- but magnified- when telling someone you are a child life specialist with a niche in bibliotherapy! For me, this revelation often requires a little illumination. And, truthfully, since the publishing of Heartfelt Books, I can say –I have gotten skillful in the art of explanation!  Continue reading

Growing Play Work in the Czech Republic

Processed with VSCOcam with a4 preset

The red rooftops of Prague and the Malejovice countryside were a welcome sight this week as I rejoined the Kralovec family in their dream to grow Hospital Play Work in the Czech Republic .

As the Klicek Foundation enters their 25th year, they celebrate not only their anniversary but their entry into a new phase of their mission. In collaboration with Charles University and the Plzen School of Nursing, they are developing a college level program on Play Work, the first of its kind in their country. This is all in addition to the work they do in hospitals for ill children and their families, and the summer camp they run for these families each year. (Click on “summer camp for a beautiful view of the property where they live and work in Malejovice, filmed by Jiri Kralovec, Jiri’s son).

As part of this vision, they invited me to consult with them about curriculum and to teach two seminars on child centered play, a topic that Marketa Kralovec says is much needed in their culture.

“It is such a necessary but unheard of thing here, to follow the child’s lead in play,” she states with feeling.

And so we got down on the floor with play dough, Legos, army figurines and plastic monsters, demonstrating child centered play techniques and then practicing them together.  We also drew play maps, shared stories of our childhood memories of play, played hand games and blew lip whistles –  the hours passed quickly

The Caritas School of Social Services hosted our first seminar. The head of the school, Martin Bednar, welcomed us warmly, expressing his gratitude by presenting me with the book Destinies as hard as stone,  about a sculpture in the school courtyard – The Monument of Stories.  A wooden series of towers house stones from around the world on many small shelves.  Students bring stones from their internships to represent a story that affected them deeply in their learning.  The school gathers for each installment to hear and record the student’s narrative. It is an incredible tribute to the work of students and the people who’ve shaped their lives.

“We are like stones in a river. If alone, the water will wash us away. Together, however, we make up a dam.”

 

image

Our second  day of teaching took place in a medieval building overlooking Wenceslas Square in the heart of Prague. Throughout our seminar occasional strains of church bells and the hoofbeats of horse-drawn carriages drifted up to the windows from the cobblestones below. I couldn’t take my eyes off the ceiling of the room, which was crossed by beams of ancient wood and hand painted panels depicting whimsical animal scenes.

IMG_5471

IMG_5470

Our students in these two venues included  both undergraduates and working play workers. They showed great passion for the children and families in their care, and a willingness to ask tough questions and share painful memories and struggles. Throughout the students’ stories ran a common thread of the childhood desire for self expression, adventure and kind attention from adults. Child-centered practice definitely fits in with this ideal.   The participants truly brought all of themselves to the learning.  I couldn’t have enjoyed a more engaging and thoughtful group. Not to mention Jiri Kralovec, who was a tireless interpreter, translating my every word.

Please enjoy the photos below, and remember the Klicek Foundation during this holiday season. If you wish to make a donation to this humane and critical work, you can contact Jiri & Marketa, the founders, at klicek@klicek.org for more information.

Processed with VSCOcam with c2 preset Processed with VSCOcam with c2 preset

IMG_5386

Processed with VSCOcam with 4 preset

Thanks to Jiri Kralovec Junior for capturing our seminars with his wonderful photography

 

 

 

 

 

 

 

 

 

Taming Tantrums

kck-sticker-box-FINAL-01

Parenting is never easy – it may just be the toughest job in the history of the world. As a mother of two young boys, and a pediatric social worker, Randi Goldfarb  has seen a lot of tantrums in and out of hospitals.

I found that tantrum behavior is universal, and no one knows what to do. Then as a parent, I couldn’t control my own child’s tantrum.

Tantrums_4kids

Randi put on her thinking cap, asking herself how do you help a child calm down  and keep calm? Then she put on her creativity cap and rolled up her sleeves. The result is the keep calm kit©. Continue reading

Hospital Play in Iceland

imgres

IMG_1422

After the 99 degree weather in Japan, travel to Iceland called for wooly socks and a winter hat. During my first day in Reykjavik, I met with Dr. Drífa Björk Guðmundsdóttir, a psychologist who served as her country’s delegate at the first global summit on psychosocial pediatric care in 2014. She hosted me at Landspitali, the National University Hospital of Iceland.

CIMG0171

Our morning together included a tour of the pediatric inpatient unit, physical therapy department, clinic and NICU, and  an hour spent in conversation with some of Dr. Drifa’s colleagues, a physical therapist, hospital play specialist, nurse, nurse manager and social worker from a non-profit agency that serves hospitalized children and their families. We discussed best practice for helping parents support and prepare their children for hospitalization. It was clear to me that these professionals held many of the same values and goals for supporting children that we have in the US.

I enjoyed our conversation tremendously, but I must admit, I treasured my time with Sigurbjörg Guttormsdóttir (thankfully nicknamed Sibba, but pronounced “Sippa”!).  Sibba is one of the two hospital play specialists, and she has worked at the hospital for 25 years. A kindergarten teacher who received training in Sweden and Oregon, she wrote a thesis on play materials to use with children.  Sibba welcomed me to her playroom and proudly shared its history and resources, inviting me to sit down and play almost immediately.

Here is the game of choice, Rush Hour.

CIMG0180

Continue reading