Category Archives: News

Family screening tests risk of developing type 1 diabetes

(iStock photo / Getty Images)

(iStock photo / Getty Images)

The McNeely Pediatric Diabetes Center is part of an international research network called Type 1 Diabetes TrialNetThe center is screening relatives of individuals with type 1 diabetes (T1D) to see if they are at risk for developing the disease. The TrialNet research study offers a blood test that can identify increased risk for T1D up to 10 years before symptoms appear.

Subscribe to MightyTrialNet offers screening to individuals:

  • Ages 1-45 with a parent, brother, sister or child with T1D
  • Ages 1-20 with a niece, nephew, aunt, uncle, grandparent, half-brother, half-sister or cousin with T1D

Screening is available in the McNeely Pediatric Diabetes Center (located on the fourth floor of the Gardenview building at Children’s  St. Paul, 345 N. Smith Ave., Suite 404. There is no fee to participate, and parking vouchers will be provided to all participating families.

For more information or to refer eligible families, contact Brittany Machus, clinical research associate, at brittany.machus@childrensmn.org or (651) 220-5730.

Children’s, Twin Cities Moms Blog host #MNvaxchat

Subscribe to MightyAugust is National Immunization Awareness Month, and Minnesota’s new immunization requirements take effect Sept. 1. With that and back-to-school mode under way, we’ll be co-hosting a Twitter chat with our friends at Twin Cities Moms Blog.

Join us for the live chat, using #MNvaxchat from 8-9 p.m. Monday, that will feature Patsy Stinchfield, PNP, director of Infection Prevention and Control and the Children’s Immunization Project at Children’s Hospitals and Clinics of Minnesota. Children’s and Twin Cities Moms Blog will be there, too. Participants who use #MNvaxchat in tweets during the live chat qualify for a chance to win a $50 Target gift card.

ALSO: Read the Children’s vaccinations blog archive on Mighty.

UPDATE: Participation strong, informative on #MNvaxchat

New Minnesota immunization requirements take effect in September

Minnesota’s new immunization requirements take effect Sept. 1, and with August serving as National Immunization Month, we urge parents to get their children’s vaccinations updated ahead of the upcoming school year.

The Minnesota Department of Health's statewide requirement changes were made to protect kids from measles, whooping cough and other preventable diseases. (iStock photo / Getty Images)

The Minnesota Department of Health’s statewide requirement changes were made to protect kids from measles, whooping cough and other preventable diseases. (iStock photo / Getty Images)

The Minnesota Department of Health’s statewide requirement changes were made to protect kids from measles, whooping cough and other preventable diseases.

Getting vaccinated before September is important.

“Vaccines take about a month or so, in general, to really be full force and working for your body effectively,” Pamela “Gigi” Chawla, MD, Children’s senior medical director for primary care, said in an interview with KARE-TV. “We want kids to be ready for their school year.”

The new requirements include:

  • Hepatitis A and B vaccinations for children enrolling in child care or school-based early childhood programs
  • Pertussis vaccine added to tetanus-diphtheria vaccine for seventh-graders
  • Meningococcal meningitis vaccine for seventh-graders

According to the Centers for Disease Control and Prevention, vaccinations given to children in the past 20 years will prevent an estimated 732,000 deaths and save $295 billion.

Looking to schedule an appointment? Contact one of our 12 clinic locations.

Changes to state’s immunization law (KARE-TV):

Collaborative caring in eating disorders

(iStock photo / Getty Images)

(iStock photo / Getty Images)

By Pam Macdonald and Janet Treasure

Eating disorders have a profound impact on individuals, as well as the people who care for them.

Eating disorder symptoms have immense social and emotional ramifications for families and loved ones. Symptoms vary and can be frightening, intrusive, antisocial, anxiety provoking and frustrating. The behaviors involved in limiting calorie intake, increasing calorie expenditure, or uncontrolled calorie intake, take many forms. The physical consequences are alarming and distressing. All semblance of normality disappears, social life evaporates, future plans are put on hold and interactions around food increasingly dominate family relationships. It can feel akin to living within a maelstrom.

Promoting beliefs that sustain hope and empower families may be an important step in reducing caregivers’ feelings of helplessness and interrupt unhelpful interactions.

Subscribe to MightyResearchers at King’s College London are equipping caregivers with tools aimed at reducing distress and boosting care-giving efficacy to support their loved ones on the road to recovery. Headed by world eating disorder specialist Dr. Janet Treasure, who will be speaking at Children’s Hospitals and Clinics of Minnesota on Monday, Aug. 4, the caregiver skills training is intended as an adjunct to the individual’s treatment program. The skills training program is the result of several empirical research studies and has been designed to provide caregivers with information on treatment goals, prognosis and maintenance factors to which they are entitled, without breaching patient confidentiality.

Utilizing a “dolphin-like” approach of warmth, gentle nudging and negotiation caregivers are taught how to listen to and analyze their emotional responses while reflecting upon what they might need to change in their own situation. Dr. Treasure’s interventions incorporate basic motivational interviewing techniques. The goal is for caregivers and professionals to work in partnership to promote the following:

  • Strengthen the caregivers’ belief in their own abilities to make change possible
  • Give caregivers the opportunity to express concerns about the cause and effects of the illness
  • Discuss the basic principles of behavior change
  • Teach good communication skills (the ability to express and process emotions)
  • Promote respect, satisfaction and a unified approach within the family (and extended family) unit
  • Learn the skills of problem solving
  • Maximize caregiver skills (warmth with limits and boundaries)
  • Highlight those factors which may be aggravating the problem
  • And, above all, encourage caregivers to practice self-care.

Are you a dolphin parent?

The skills training intervention uses a series of lighthearted animal analogies to encourage the caregiver to reflect upon his or her default caring style; for example, a kangaroo does everything to protect, keeps their loved one firmly in the pouch in an effort to avoid any upset or further stress, while the rhinoceros, fueled by stress, exhaustion and frustration, or simply one’s own temperament, attempts to persuade and convince by argument and confrontation. Emotional responses are captured with the help of the ostrich, who avoids talking and thinking about the problem, frequently due to the difficulty in coping with the distress of challenging eating disorder behaviors. The jellyfish becomes engulfed in intense emotional responses. These may include high levels of self-blame or perfectionist tendencies with regards to parenting skills or expectations of what it is to be a “good parent.” As illustrated above, the goal of the intervention is to promote a dolphin-like behavioral approach to caring and a St. Bernard emotional approach, responding consistently – reliable and dependable in all circumstances.

Dolphin parenting presentation

Children’s Center for the Treatment of Eating Disorders is sponsoring a short presentation by Dr. Treasure from 5:30-6:30 p.m. Monday, Aug. 4, at the John Nasseff Conference Center, 333 Smith Ave. N., in St. Paul. No registration or fee is required to attend.

The Center for the Treatment of Eating Disorders

The Center for the Treatment of Eating Disorders delivers the leading evidence-based treatments to patients of all ages and with all types of eating disorders. After a comprehensive assessment, the team develops an individualized approach for each patient. We offer customized inpatient and outpatient treatment for children, adolescents and adults. We use the latest evidence-based treatments, including: family-based therapy (FBT) and Cognitive Behavioral Therapy – Enhanced (CBT-E).

Everyone on the team — including psychiatrists, psychologists, hospitalists, dietitians and social workers — has special training in motivational strategies and the core treatments for helping children, adolescents and adults with anorexia, bulimia and other eating disorders. We offer inpatient treatments for young patients through college age at Children’s – Minneapolis, and for adults at Abbott Northwestern Hospital.

Janet Treasure, Ulrike Schmidt and Pam Macdonald co-edited “The Clinician’s Guide to Collaborative Caring in Eating Disorders.”

Construction on St. Paul hospital entrance begins

ConstructionWork begins Monday to remodel the Garden View building entrance at Children’s – St. Paul. The Garden View building will remain open during the work, but the patient pick-up/drop-off area, existing entrance and patio will be closed for the duration of the project.

Families and visitors dropping off or picking up will be directed to Level B of the Red Ramp. Security guards will be stationed outside to help direct traffic, and temporary signage will alert visitors to the traffic changes.

Please be on the lookout for temporary road closures, detours and additional precautions as the work progresses. Thank you for your patience throughout the project.

Volunteers needed for Minnesota State Fair

Want a free ticket to the Minnesota State Fair?

We’re looking for fun volunteers to help staff our Making Safe Simple booth. We have four interactive stations: helmet safety, car safety, household safety and water safety. All volunteers receive free entry to the fair and a T-shirt.

There still are several volunteer spots available — Labor Day weekend is our greatest need for champion volunteers:

Subscribe to MightySaturday, Aug. 30

  • 5-8:30 p.m.

Sunday, Aug. 31

  • 2-5:30 p.m.
  • 5-8:30 p.m.

Monday, Sept. 1

  • 2-5:30 p.m.
  • 5-8:30 p.m.

Encourage your family and friends to volunteer, too!  Please note that volunteers must be 18 years or older. To sign up, please contact Ana Nugent at Ana.Nugent@childrensmn.org. We hope to see you at the fair!

Laser in action: See how Gavin’s tumor met its match

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children's – St. Paul on Monday, June 16, 2014.

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children’s – St. Paul on Monday, June 16, 2014.

In the two years since Gavin Pierson’s brain tumor, which he calls “Joe Bully,” was discovered, he has undergone 17 surgeries. A combination of craniotomies and the Pfizer drug, palbociclib, had been managing the growth of Joe Bully, but not decreasing its size. Gavin and his family were growing tired and frustrated with invasive surgeries, and Gavin wasn’t bouncing back as well as they hoped.

Enter Visualase.

Visualase is a laser used for neurosurgery and is guided by MRI images to precisely target areas of the brain that were previously thought inoperable. After making a 3-centimeter incision, Joseph Petronio, MD, and his team guided a small laser fiber directly to Gavin’s tumor. Children’s is the only pediatric hospital in the Midwest using Visualase, and Gavin is the only patient in the country to use this technology to treat a mature teratoma brain tumor.

Learn more about how Dr. Joseph Petronio used the Visualase laser:

Subscribe to MightyNot only did this technology target and dissolve a significant portion of Gavin’s tumor, it’s also prohibiting re-growth – stopping Joe Bully in its tracks. The laser is so targeted that the brain tissue surrounding the tumor was unharmed, making for a quick recovery. Within 12 hours, Gavin was sitting up, eating and laughing with his siblings and parents. Gavin went home the next day and was back to school within four days.

These types of minimally invasive surgeries have incredible benefits for Children’s patients. Since obtaining Visualase in October 2013, Children’s has treated patients as young as 12 months for epilepsy and other types of brain tumors. Tools like Visualase are making tumors we once thought were inoperable – operable.

Gavin vs. Joe Bully: First-of-its-kind laser surgery shrinks tumor by more than 40 percent

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

If you’ve been following 8-year-old Gavin Pierson’s story, you know he and his family have been through a lot. In 2012, Gavin was diagnosed with a mature teratoma brain tumor.

Since then, he has undergone numerous craniotomies and he and his family have dealt with big drug companies to fight his brain tumor, which Gavin refers to as “Joe Bully.” Unfortunately, Joe Bully is a particularly tough tumor, located in an area that is difficult to operate on and comprised of hard, “concrete-like” tissue. While Gavin’s prior treatments made progress, Joe Bully kept growing back.

give_gavin_blogBut it appears that Gavin’s neurosurgeon, Joseph Petronio, MD, may have found Joe Bully’s weak spot. Over the past eight months, Gavin has undergone two Visualase laser surgeries, an MRI-guided procedure designed to incinerate the tumor. He’s the first patient with a mature teratoma to ever use Visualase – and it may have stopped Joe Bully in its tracks.

Children’s and the family also successfully petitioned pharmaceutical company Pfizer to grant Gavin access to an experimental drug, palbociclib, to help control the tumor’s growth. Gavin is the youngest patient to use palbo.

We’re happy to announce that a recent MRI scan showed Gavin’s formerly peach-sized tumor has shrunk more than 40 percent. Even better? There are no signs of regrowth.

Gavin’s courage and strength inspire us every day. Thank you, Gavin, and congratulations.

Learn more about Gavin’s story and surgery:

Tech Spotlight: A look at Visualase, a minimally invasive laser surgery system

Visualase's workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment.

Visualase’s workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment.

Gavin Pierson, now 8, of Ramsey, Minnesota, underwent two Visualase procedures in October and February.

Gavin Pierson, now 8, of Ramsey, Minnesota, underwent two Visualase procedures in October and February.

The story of Gavin Pierson, the 8-year-old Ramsey, Minnesota, boy battling a brain tumor, includes a number of key players: his doctors, parents, siblings and care team, and the thousands of people who have followed his two-year fight against the aptly nicknamed “Joe Bully.”

But one of Gavin’s most important allies doesn’t have a degree, voice or personal Facebook page.

Visualase, an MRI-guided, minimally invasive laser system, has been the Kryptonite to Gavin’s tumor since he became the first person with a mature teratoma brain tumor to undergo the procedure. His first laser surgery took place on Oct. 29, 2013, at Children’s Hospitals and Clinics of Minnesota and his second four months later on Feb. 20, 2014.

“There are many things that make this procedure unique. One is the use of MRI, which allows us to monitor the temperature of both the tumor and the normal brain during the laser treatment,” said Joseph Petronio, MD, medical director of pediatric neurosurgery at Children’s and the doctor who led Gavin’s Visualase procedures. “The composition of (Gavin’s) tumor is unusual, including elements of bone and skin that makes it conduct heat very broadly. By being able to monitor temperature that closely, we are able to target the tumor more precisely without damaging other tissue.”

Founded in 2005, Visualase, Inc.’s system is a minimally invasive laser procedure that allows surgeons to pinpoint and treat lesions and tumors with extreme precision.

So, how does Visualase work?

  • Visualase Cooled Laser Applicator System: The system features a disposable fiber optic catheter with a built-in cooling mechanism that prevents overheating near the surface of the applicator. This laser catheter is placed through a small opening in the scalp and skull and into the center of a tumor using advanced MRI technology. Laser energy is then used to heat the tumor carefully. The system was engineered to allow for the use of higher laser powers to destroy tumors with shorter exposure times.
  • Laser generator: The generator produces light energy that is used to thermally ablate, or destroy, soft tissue.
  • Workstation: The workstation interfaces with an MRI to allow temperature control and monitoring in real time during a treatment. It also provides on-screen visuals of the tissue as it turns into a solid or semi-solid state. Because of the in-depth monitoring, the procedure results in a high level of precision and control.
  • Temperature: The time it takes to destroy parts of the tumor depends on the temperature of the laser. When set to 113-140 degrees Fahrenheit, tumor cells eventually get destroyed. Cells and tissue are destroyed immediately when the laser is between 140-212 degrees. Anything above 212 degrees, though, can cause water in the tissue and areas inside a cell to vaporize, and leads to ruptured cells and tissue components.
  • According to Visualase, once soft tissue is destroyed, or ablated, it is considered non-viable and is reabsorbed, leaving little evidence that a tumor or burn existed.

After getting its start in treating liver and prostate problems, the Visualase Thermal Therapy Subscribe to MightySystem was cleared by the Food and Drug Administration in 2007 for the ablation of soft tissue in neurosurgery. Visualase’s first minimally invasive neurosurgical procedures were performed in 2006 in Paris as part of a study for treating brain tumors.

The Visualase laser system is in use at more than 40 hospitals, nationwide, including 15 pediatric hospitals. In pediatric patients, including at Children’s Hospitals and Clinics of Minnesota, Visualase has also been used to address brain lesions that cause epilepsy.

“What’s exciting to me is the path this technology opens to areas of the brain that were closed to us before,” said Petronio. “To think we could reach a day when the term ‘inoperable brain tumor’ in children is obsolete is extraordinary.”

Source: visualaseinc.com

The road to recovery: Pediatric cancer services

Each year, close to 12,500 children in the U.S. are diagnosed with cancer. Among them who live in the Upper Midwest, more than 70 percent are treated by Children’s Hospitals and Clinics of Minnesota. This week we shared Jenna Carnes’ cancer journey on Twin Cities Moms Blog. Jenna is one of many teens we see in Children’s Cancer and Blood Disorders Clinic each week, and just like every pediatric cancer patient, her journey is a unique one.

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

“Like all of our patients, we want Jenna to still be a kid and not to have to grow up too quickly because of the disease she’s dealing with,” said Dr. Joanna Perkins, Jenna’s treating physician in the Cancer and Blood Disorders Clinic at Children’s. “With the suite of treatment options we offer, Jenna’s been able to get back to being a normal teen.”

Beginning with the Child Life department, Jenna utilized many of Children’s support services to help her in her healing journey. From how to talk about cancer with her friends at school to going to surprise Minnesota Twins baseball games with her family, Jenna said her child life specialists made each day that she was at the hospital just a little easier. This was a welcome relief for her family.

“What makes Children’s different than any other hospital are the services we offer that go above and beyond standard inpatient care,” said Dr. Perkins. “From the supportive care – ranging from physical therapy, psychology and nutrition specialists, music therapy, massage and pain and palliative care – to special events geared towards the whole family, we try to make the time kids and families have to spend in the hospital as good as it can be. A lot of kids appreciate the simple things, too – big TVs and video games.”

In addition to Children’s in-house services, many patients (including Jenna) go to Camp Courage in Maple Lake, Minn., to “just be a kid” for a week each summer. The camp also provides patients’ families with a much-needed break. With Children’s staff physicians and nurses, onsite, to administer medication and keep close watch on their patients, patients and their siblings take part in time-honored camp traditions and let loose for the week.

“Kids of all ages are there, and we’re all going through something really similar,” said Jenna. “There are no strange looks.”

As Jenna and her family prepare to celebrate the end of her chemotherapy treatments, Jenna’s care team at Children’s will be by her side, cheering her on at her end-of-treatment party on June 12. Soon, Jenna will be a part of Children’s Destination STAR (Surveillance and Testing After Recovery) Clinic, which assists her with the transition to life after cancer therapy. She’ll work with Children’s Health and Wellness Team, consisting of staff members from oncology, nutrition services, physical therapy, psychology and child life, as well as her primary care physician for wellness visits to make sure the cancer does not return.

“Going to the hospital for cancer treatments will never be fun,” said Jenna. “But, I’m honestly going to miss coming to Children’s – it’s almost become a second home.”

Visit Children’s Hospitals and Clinics’ Cancer and Blood Disorders Clinic for more information. Children’s first annual Shine Bright Bash on Sept. 13 is to celebrate and support the advancements in pediatric cancer and blood disorder care.