Category Archives: Research

Healthy childhood development important for all

Mike Troy, Ph.D,

Mike Troy, Ph.D, LP, is Children’s medical director of Behavioral Health Services.

By Dr. Mike Troy

I had the honor this past week of participating in a panel discussion about the importance of early childhood development to healthy communities. Hosted by Healthy States, an initiative of American Public Media and Minnesota Public Radio, the topic of the evening was “Community Responses to Toxic Stress.” As readers may know from our recent report and community engagement work, the subject of early childhood development is near and dear to my heart and a significant focus of Children’s Hospitals and Clinics of Minnesota.

My colleague and friend, Dr. Megan Gunnar, of the University of Minnesota’s Institute of Child Development presented scientific research on the essential role of a safe and nurturing social environment for healthy brain development. She also described how high levels of environmental stress in infancy and early childhood can lead to enduring problems in learning, physical well-being and social development. We know that birth to age 3 is an incredibly formative time for a developing mind, with 700 new neural connections made every second. But if a child lives in an environment with persistent challenges (toxic stress) such as poverty, poor nutrition and inadequate housing without the buffer of positive caretaking relationships, it prevents those connections from forming in an effective and efficient manner. Experience shapes brain architecture, and a poor early foundation affects development throughout the lifetime.

Panelists MayKao Hang, president and CEO of the Wilder Foundation, and Sondra Samuels, president and CEO of Northside Achievement Zone, and I discussed how our organizations are helping to mitigate toxic stress and foster healthy child development. I left this lively discussion energized to continue Children’s work with community partners to help foster healthy development in children. Some of my thoughts include:

  • One way parents and community leaders can help is to encourage consistent monitoring of child development. At each well-child appointment and over time, we screen our young patients for normal development and identify challenges. Early intervention is key and can change the trajectory of a child’s life.
  • We can motivate leaders and others to action by educating them about the science of early brain development and the unequaled opportunity for healthy development that is presented during the first few years of life. Behavioral and emotional problems often have their roots in unhealthy conditions (toxic stress) in early, foundational stages of life.
  • What babies need is essentially the same across all communities: attentive and loving relationships, safe and stable environments, healthy food and developmentally appropriate activity.

Healthy development happens in the home and in the community through relationships with families, friends and neighbors. We all can play a role in supporting a strong start. Our collective focus must be on healthy development for all children.

Mike Troy, Ph.D., LP, is medical director of Behavioral Health Services at Children’s Hospitals and Clinics of Minnesota.

NBC News: Sharing the story of Children’s cancer and blood disorders expertise

Michael and Megan Flynn with sons Andrew, 7 months, and Thomas, 5, and daughter Olivia, 3 (Photo by Julie Ratkovich Simply Bliss Photography)

NBC News shared the story and collective work of Children’s Hospitals and Clinics of Minnesota’s blood and cancer disorders team, including Dr. Kris Ann Schultz, Dr. Yoav Messinger, Gretchen Williams, CCRP, and Anne Harris, MPH, among others, who have led the way in enabling the early detection and effective treatment of children in families affected by rare genetic cancers.

via NBC News: One rare cancer leads to another: Cancer registry saves baby’s life

In 2009, while trying to understand pleuropulmonary blastoma (or PPB, a rare early childhood lung cancer), researchers leveraging data from Children’s International Pleuropulmonary Blastoma (PPB) Registry uncovered an unexpected cause: a mutation in DICER1, a master controller gene that helps regulate other genes. By leveraging those learnings and coupling it with new data from the International Ovarian and Testicular Stromal (OTST) Registry – a “sister” registry of the International PPB Registry – Children’s has recently discovered that the DICER1 gene mutation may underlie many additional rare childhood genetic cancers and could tell us something fundamental about how most cancers arise.

Children’s presented its promising findings this weekend at the American Society of Clinical Oncology (ASCO) Annual Meeting, advancing the potential for early diagnosis and proactive treatment of children in families affected by PPB, as well as other rare genetic cancers such as certain ovarian, nose, eye and thyroid tumors.

With the establishment of the International PPB Registry in 1988 and the International OTST Registry in 2011, Children’s, along with our partners, have become the world’s leading experts on how to care for children with PPB and other cancers marked by the DICER1 genetic defect. As a result, PPB could be among the first cancers routinely curable before it progresses to a deadly form.

Children’s work and ability to follow the science continues to be made possibly entirely by philanthropy, including the St. Baldrick’s Foundation and the Pine Tree Apple Tennis Classic.

Congratulations to the Children’s cancer and blood disorders team!  Thank you for your commitment and your amazing, groundbreaking work.

Study: Concussion recovery time doubles when injury is sustained during school year

A patient visits the concussion clinic at Children's — St Paul on March 11, 2014. (Photo by Scott Streble)

A patient visits the Concussion Clinic at Children's — St Paul on March 11, 2014. (Photo by Scott Streble)

Concussions and the treatment after one is sustained have been at the forefront of media coverage in recent years. What once was viewed by some as brag-worthy or a badge of honor now is being taken seriously for its potential immediate and long-term effects.

While progress has been made in how the seriousness of a concussion is perceived, it’s still relatively unknown when it’s acceptable for individuals, including children, to return to normal cognitive and physical activity after suffering one.

According to a study by the Concussion Clinic at Children’s Hospitals and Clinics of Minnesota, a child who sustains a concussion during the school year takes significantly more time to recover than one who suffers a similar injury during the summer.

“We were surprised at the magnitude of the differences,” Robert Doss, PsyD, co-director of the Pediatric Concussion Program and one of the study’s researchers, said. “We weren’t surprised that it was in that direction; just simply that the magnitude was what it was.”

Researchers took patients seen in the Concussion Clinic at Children’s from 2011-12 — 43 children who suffered concussions during the school year and 44 injured in the summer — and monitored their progress. For the children who sustained a concussion in the summer, the average number of days to recover was 35. Recovery time more than doubled (72 days) when the injury was sustained during the school year.

Another study, “Returning to Learning Following a Concussion,” published in October in Pediatrics, the official journal of the American Academy of Pediatrics (AAP), explains the difficulties children experience in a school setting after suffering a concussion. Post-concussive symptoms often can linger or increase in severity without proper adjustments to a child’s environment or academic routine. Research suggests that academic demands and school environment may be a barrier to recovery.

Because each concussion and child is different, the AAP study recommends creating a multidisciplinary team to facilitate a student’s recovery and help him or her return to normal activities. Those four teams are: 

  • Family (student, parents, guardians, grandparents, peers, teammates and family friends)
  • Medical (emergency department, primary care provider, concussion specialist, clinical psychologist, neuropsychologist, team and/or school physician)
  • School academic (teacher, school counselor, school psychologist, social worker, school nurse, school administrator, school physician)
  • School physical activity (school nurse, athletic trainer, coach, physical education teacher, playground supervisor, school physician).

“It’s important to understand the individual child,” Doss said. “It seems like our practitioners are noticing more responsiveness by the schools to put forth accommodations for these kids. Some schools are more accommodating than others. Some seem to have a grasp of concussions.

“Overall, I think our perception is that schools are more receptive and thinking about it more actively. They’re instituting programs on their own, so they’re prepared for what comes next.”

Subjects were evaluated and treated in the Concussion Clinic after presenting with symptoms consistent with mild head trauma.

Researchers identified two groups based upon whether they recovered from their concussions during the school year or summer months and were ages 7 and older. The school year was defined as September through May. The school group was matched to the summer group by age and gender.

The average age of the children in the study at the time of injury was 14 years old.

Date of recovery was defined as the final visit date in the Concussion Clinic.

Doss also cautions parents and kids that they aren’t out of the woods once recovery is complete.

“It seems pretty clear in some of the guidelines that prior history of a concussion puts you at a higher risk for subsequent concussions,” he said.

However, according to the Children’s study, there’s little empirical support for the amount or duration of cognitive and physical rest after a concussion and the time frame for children to safely return to normal daily activities without experiencing ongoing cognitive or physical deficits.

According to the “Returning to Learning” study, cognitive rest refers to avoiding potential cognitive stressors, such as texting, video games, TV exposure and schoolwork. However, to date, there is no research documenting the benefits or harm of these methods in either the prolongation of symptoms or the ultimate outcome for the student following a concussion.

“Should the kids not be on Xbox versus playing a little bit of Xbox?” Doss said. What may be best during recovery depends on the case. “How much schoolwork is appropriate?”

Doss said the perceptions families and academic institutions have about concussions are evolving.

“Schools across the U.S. did not seem to be prepared. You bump up against the usual: The kids look fine. They’re not limping. They have an injury that’s not visible,” he said. “The general population is dealing with this heightened awareness of concussions.”

Variables collected for analysis included school grade, prior concussion history, loss of consciousness with presenting injury, first clinic visit ImPACT computerized cognitive testing raw scores — verbal memory composite, visual memory composite, visual motor speed composite, reaction time — ImPACT post-concussive symptom  scores, and history of depression and anxiety, migraine, other neurological problems, learning disability or ADHD.

The study was conducted by Robert Doss, PsyD, Neuroscience Center of Children’s Hospitals and Clinics of Minnesota, and Minnesota Epilepsy Group, P.A.; Kara Seaton, MD, Emergency Department of Children’s Hospitals and Clinics of Minnesota; and Mary Dentz, RN, CNP; Joseph Petronio, MD; Julie Mills, RN, CNP; Jane Allen, RN, CNP; and Meysam Kebriaei, MD, of the Neuroscience Center of Children’s Hospitals and Clinics of Minnesota.

Patient determined to change the future for those with hydrocephalus

By Olivia Maccoux

Team Liv WALKS for hydrocephalus research.

I was born at 29 weeks and was diagnosed with a condition called hydrocephalus (abnormal amount of spinal fluid in/around brain). I’ve lived with and dealt with the condition for the past 17 years and will continue to for the rest of my life.

A life with hydrocephalus means NOTHING is certain. It is both physically and emotionally draining on me and everyone around me. This is a life threatening condition, and the sad part is the lack of research that is being done to help the over one million Americans who live with it. Treating hydrocephalus costs more than $1 billion annually, yet, the National Institute of Health invests approximately only $1 million a year on hydrocephalus research.

Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and absolutely no progress toward prevention or a cure. The only treatment is brain surgery, where a surgeon implants a device called a shunt to drain the fluid. However, 50 percent of shunts fail within two years.

I’ve never had a shunt last for two years. I’ve actually had times where the shunt has only lasted a few hours, which resulted in my immediate return to the operating room for a new one. To date, I’ve endured more than 90 brain surgeries and have been in critical condition because of hydrocephalus.

The Hydrocephalus Association organizes WALKS every year to raise money for treatment and research. I’m determined to help change the future for everyone who struggles with hydrocephalus and its complications.

My WALK team, Team Liv, is also committed to helping this cause. We’re looking for anyone who would like to walk with us, donate, or both! Donations of any size are gratefully received and are tax-deductible. Your donation will help support critical research so that I and the one million other Americans living with the challenge of this condition can lead a better life. Learn more about donating.

Olivia is a patient and a Youth Advisory Council member. Read Olivia’s blog post earlier this year on juggling school during a hospitalization.

Addressing preemie care head on in 2013

By Dr. Ellen Bendel-Stenzel

As the Star Tribune so beautifully illustrated with its Thanksgiving cover story, “Home After 98 Days In Preemie Land,” the issue of prematurity is a heart-wrenching and persistent challenge for doctors and parents-to-be.  Preterm birth can, and does, affect every race, ethnicity, religion, age, socioeconomic status and demographic.

Here in the Upper Midwest, more than 200,000 babies are born every year. And about 22,000 of those babies or little more than 10 percent are born premature. However, as a preterm infant, you couldn’t ask to be born in a better place than Minnesota. We have some of the highest survival rates in the world, and yet we received a “B” on the March of Dimes 2012 Premature Birth Report Card.  Why?  Because even though an infant born beyond 28 weeks gestation, or 7 months of pregnancy, has a nearly 100 percent chance of survival, these infants still remain at risk for respiratory problems, feeding issues, developmental delays and behavioral and social disabilities.

Unfortunately, the amazing medical progress we’ve made over the past 25 years, which lead to the improved outcomes for so many premature infants, has begun to plateau. Now we as health care providers need to take the lead and drive future improvements.

There will always be high-risk pregnancies, and ensuring the best outcomes for these scenarios is not dependent upon reducing the prematurity rate alone.   We need to be proactive and provide optimal care to both mother and baby, so that we can decrease the incidence of prematurity and improve the outcomes of those born early or with complex medical conditions. In short, we need to address the needs of the infant long before a mother’s due date.

In early February of next year, Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital will open The Mother Baby Center in Minneapolis. It will be the first of its kind in the Upper Midwest, and one of only a few in the nation where mother-baby care is fully integrated. This new Center will bring together maternal and infant specialists, with the understanding that every pregnancy has the potential to be high risk.

With a proactive approach, the goal is clear: optimize care from conception to delivery.  This means the sharing of information across all nine months of the pregnancy whenever possible.  It means providing quick access to specialists when concerns for the health of either the mother or baby arise. It means collecting data to look at the root cause of prematurity in our own community.  It means collaborating in clinical trials that start at the first obstetrical visit and end in the pediatrician’s office at school age follow-up.  And it means continuing to incorporate the latest technologies and therapies on the Newborn Intensive Care Unit (NICU), while simultaneously measuring their effects and proving their validity.

While simple in theory, these are lofty goals that are difficult to implement and execute, but are well worth the effort.  As physicians we must continue to set the bar high and help moms achieve term delivery whenever possible, while at the same time improve the care for the babies that are born early.  In doing so, we’ll create a recipe for success that will provide enormous benefits to Minnesota babies and families.

Dr. Bendel-Stenzel is a neonatologist and co-director of clinical research for the Newborn Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

Mom finds comfort in cancer research team after rare diagnosis

This is a guest post by Kim Sondergard, whose son Tony was diagnosed with cancer when he was a few months old. The Sondergard family recently attended the 2012 PPB Family Meeting at Camp Courage.

My son Tony’s entry into this world was a bit bumpy.

He was born with a fever and pneumothorax (air pockets) in both lungs. Doctors and nurses tended to him for four days in the special care nursery. When he was fever-free and able to keep his body temperature within a normal range on his own, my husband and I were able to take our baby boy home. For four months, Tony was healthy.

He developed a cough and a fever, so we took Tony to his pediatrician. A chest X-ray showed what his pediatrician thought was a cyst. It was thought to be a congenital cyst and could be removed through surgery. Tony was admitted to Children’s Hospitals and Clinics of Minnesota, where he had surgery. From his nurses, to his pulmonary team, to the surgeons, to his anesthesia team – everyone rocked!

During our follow-up appointment with the surgeon two weeks later, we learned that the cyst that was removed was abnormal. Our baby had cancer. It was a rare form of childhood lung cancer called pleuropulmonary blastoma, or PPB. I didn’t know how to react.

Tony

The surgeon made an appointment for us to meet with Dr. Yoav Messinger, an oncologist who specializes in this type of cancer and is among the personnel at the International Pleuropulmonary Blastoma Registry. The PPB Registry is a collection of physicians, scientists and data analysts from many institutions, including Children’s, who have been working together for 20 years to evaluate PPB cancer cases.

Dr. Messinger gave us a deeper understanding of Tony’s cancer, and he explained the treatment options. Unfortunately, there wasn’t significant research on treatment options because this cancer was so rare. At the time of our meeting with Dr. Messinger, we also were introduced to Gretchen Williams and Dr. Jack Priest – also part of the PPB Registry.

Tony’s dad and I, as well as our relatives, provided the PPB Registry with DNA samples for a genetic study. They have found in many cases children with PPB carry the DICER1 gene. However, no one in his family, including Tony, carries this gene.

Tony

Dr. Messinger, the Medical Director of the PPB Registry, knows genetic testing needs to continue. “If we can determine in advance which children are at risk for PPB, we will do our best to try and diagnose PPB when it’s in the earliest, most curable stage.”

Two months after Tony’s diagnosis, a CT scan indicated another spot on his right lung. We decided at that time we’d proceed with chemotherapy. Dr. Messinger and Dr. Priest also recommended the spot be removed. Ultimately, we learned it was scar tissue – not cancer.

For an entire year, Tony underwent weekly chemo treatments. He also had CT scans every three months. None showed recurrence.

This past May, Tony celebrated his third year of being cancer free. Next month, he turns 5. He’s happy, active and healthy – all a parent wants for her child.

I would not have gotten through Tony’s diagnosis without the staff at Children’s and the PPB Registry. They were there step by step.

I believe in and support the continued research of the PPB Registry, so they can determine PPB’s cause and how to cure it. Not all kids diagnosed with PPB are as lucky as Tony.

Children’s takes steps to minimize radiation exposure

MRI Scanner

There’s often a lot of information in the media and medical journals about CT scans (known as Computed Tomography) and how they expose children to radiation. Most recently, The Lancet, a medical journal, published a study that reports that children who get multiple CT scans are at increased risk of leukemia and brain cancer.

We know children are more sensitive than adults to radiation exposure and that CT scans are one of the most common and significant medical exposures of children to radiation. We also know that although the risk of radiation from a CT scan is low, it’s not zero. There can be a slight increased risk of cancer later in life.

“We take this seriously, and we do everything we possibly can at Children’s to minimize the level of radiation exposure to our patients while preserving the quality of the images we need,” said William Mize, MD, a pediatric radiologist.

Here’s how:

  • Our scan settings are adjusted according to your child’s size and age.
  • We work under the ALARA (as low as reasonably achievable) principle. Some of the steps we take include limiting the area of exposure to include only the area of specific medical concern and shielding sensitive areas such as breast shielding during chest CT.
  • We don’t recommend a CT scan as a diagnostic test unless it’s necessary. When appropriate, we suggest other imaging tests such as an ultrasound or MRI (or magnetic resonance imaging) which do not use radiation.
  • We continue to re-evaluate our protocols and explore new opportunities for reducing radiation.

For many medical problems in children, the CT scan is invaluable. Often, it’s the only test that can provide the information needed to optimally treat children. There are potential risks and benefits to all medical treatments and procedures.

The CT scan is capable of viewing all the internal organs, which may lead to a diagnosis that was previously only possible with surgery. When we recommend a CT scan, the benefits to a child’s health from the information obtained outweigh the minimal risk associated with the low dose of radiation.

Where kids are concerned, rest assured that their safety and health are our top priority.

For more information about our procedures involving radiology, click here.

To read the Society for Pediatric Radiology’s response to The Lancet article, click here.

Supporting health research through the National Children’s Study

Children’s is excited to support, and ultimately benefit from, the National Children’s Study. Even though most children grow up healthy and live longer than ever before, the rates of asthma, diabetes, obesity, and other health problems continue to rise.  We still have many questions about how genetics and the environment—the air we breathe, the water we drink, and the communities we live in—affect health, especially our children’s health.

The National Children’s Study (NCS) is the largest research study of genetic and environmental influences on children’s health ever conducted in the United States.  The Study enrolled women before or during pregnancy and will follow their children until they turn 21 years old.

Information learned from the Study could help doctors and other health care providers help children achieve the best health and may prevent health problems in children and adults.

The participation of families from many different racial, ethnic, and socioeconomic groups across the country is critical for the success of the Study.  More than 100 study locations in the United States were chosen through a selection process than ensures families are enrolled without any bias.  There are currently two active Vanguard (or pilot) NCS locations in Minnesota.

In early 2012 it was determined that sufficient numbers of women had been enrolled in study and enrollment of new participants ended as of March 1, 2012.  Current efforts are focused on retaining enrolled participants and evaluating the pilot phase in preparation for the Main Study which is planned to begin in 2013.

Families and children who participate in the Study are making an important contribution to the health of future generations.  More information about the National Children’s Study can be accessed at nationalchildrensstudy.gov.