Author Archives: Jimmy Bellamy

About Jimmy Bellamy

Social media specialist, Children's Hospitals and Clinics of Minnesota

“Children’s Pedcast”: Dr. Doug Hyder on headache management

Doug Hyder, MD, medical director of pediatric neurology at Children’s Hospitals and Clinics of Minnesota, provides information about headaches, including the symptoms, how they originate, how they’re connected to our activities and different from migraines, and how they can be managed.

“Children’s Pedcast” can be heard on iTunes, Podbean, Stitcher, YouTube and Vimeo.

The ‘funnest’ place in the hospital

Grace Vokaty loves the Child Life Zone at Children's — St. Paul.

Grace Vokaty loves the Child Life Zone at Children’s — St. Paul.

Grace Vokaty

When I was 7 years old, I came to Children’s – St. Paul because I had type 1 diabetes. When I was in the hospital, I was sad because there isn’t a cure for my disease. But then I was invited to visit the Child Life Zone, which was made possible by Mr. Garth Brooks and his friends at Teammates for Kids. The Zone is so fun, and now whenever I see the doctor, I tell my parents that we have to stop and play.

subscribe_blogI enjoy coloring and painting, air hockey, video games, the photo booth and lots of other stuff. I like that it’s a fun place to go while I’m at the hospital. And when I’m not feeling happy, it cheers me up.

Plus it’s nice to meet other kids like me who are patients, too. Even my parents enjoy it because I can play there while they are taking classes and learning how they can help me with my diabetes.

In November, I had the chance to meet Mr. Brooks and to tell him thank you for building the Child Life Zone. I told him that it is the “funnest” place I have ever been and that he did a really great job. It makes me happy to know that people from all over care about kids at Children’s, and I hope that when other kids go there it makes them smile.

Grace Vokaty is a patient at Children’s Hospitals and Clinics of Minnesota.

Coordinated care with heart

Sam and Stacey Schumann

Sam Schumann, pictured with his mother, Stacey, was born with hypoplastic left heart syndrome.

Stacey Schumann

I was 20 weeks’ pregnant when my husband and I learned that our son, Sam, had hypoplastic left heart syndrome (HLHS) — a severe heart defect. As parents, we were devastated that our child may not make it to his birth, and if he did, may not have the best life after he was born.

subscribe_blogBut Children’s Hospitals and Clinics of Minnesota calmed so many of our fears. Sam’s care team, including a pediatric cardiologist, perinatal physicians and nurses, surgeon, and many more have been with us since the beginning, helping us navigate this scary diagnosis. And every time Sam has undergone an open heart surgery — five so far, each represented by a heart on his monkey — we’ve found great comfort in his team’s extensive work with HLHS, knowing that they have been at the forefront of ways to treat this complicated condition.

By working together, our team has made our visits to Children’s better than expected. They’ve empowered us to be part of Sam’s care, and we are able to influence important decisions that have ultimately helped him feel better. I am amazed that everyone has said how grateful they are to help Sam, but I don’t think they realize how amazing they are and how grateful we are for them. They have given our son his life; they have helped us be a family.

Stacey Schumann is the mother of Children’s patient Sam Schumann.

Giving meaning to technology

Laura Gandrud, MD

Laura Gandrud, MD

Laura Gandrud, MD

At Children’s McNeely Pediatric Diabetes Center, we have the privilege of helping kids and their families learn how to manage their diabetes so they can live happy, healthy lives. But for some kids, successful monitoring can be a challenge. This is especially true for adolescents.

Teenagers who have diabetes may struggle to feel “normal” around peers, so they aren’t as diligent about testing their blood sugar. Poor management of diabetes can have negative long-term effects.

We know it is important to talk to teens on their terms. So, last year we looked at new ways that technology could help with diabetes management. Smartphones were a logical place to start.

subscribe_blogBecause of the generosity of donors who recognize the importance of investing in medical innovation, we have been able to pilot the first-ever program that equips teenage patients with a free smartphone that connects to their glucose monitor to track readings and provides reminders of when to test. Most importantly, it also provides an incentive to stick with their treatment — if they miss too many readings, their phone service is temporarily shut off.

By communicating with teens through a device that already is an integral part of their lives, we can influence better health decisions. And although it’s still early on in our trial, we’re already seeing improvement. Teenagers are positively changing their behaviors and taking responsibility for their health. As a physician, that is exciting to see.

Laura Gandrud, MD, is a pediatric endocrinologist at Children’s Hospitals and Clinics of Minnesota’s McNeely Pediatric Diabetes Center in St. Paul.

Children’s promotes “brain breaks” for kids in Minnesota schools

subscribe_blogNow there’s a way for kids to fit more fun into their school days. GoNoodle is a program that offers “brain breaks” to kids as part of their class curriculum. Children’s Hospitals and Clinics of Minnesota sponsors GoNoodle in 336 Twin Cities-area elementary schools.

According to GoNoodle, 84,874 students in Minnesota participated in GoNoodle activities for more than 3.5 million minutes in April.

Gigi Chawla, MD, Children’s senior medical director of primary care, joined WCCO Mid-Morning’s Kylie Bearse and Jason DeRusha to talk about the program and its benefits.

“Children’s Pedcast”: Missy Berggren on food allergies

Missy Berggren the Marketing Mama

Missy Berggren, aka “Marketing Mama,” with kids ages 9 and 7

On Episode 7 of “Children’s Pedcast” and in recognition of National Food Allergy Awareness Week, we get a parent’s perspective on food allergies. Mother, blogger, marketing pro and food-allergy advocate Missy Berggren, also known as “Marketing Mama,” joins the show to share her experiences raising a child with severe food allergies.

Whether or not you’re a parent of a child with a food allergy, Missy provides answers related to school, restaurants, play dates and parties that others may find helpful. We also learn the eight most common food allergies in the U.S.

Food-allergy resources:

Follow Missy Berggren on Twitter @MarketingMamaFacebook and MarketingMama.com. “Children’s Pedcast” can be heard on iTunes, Podbean, Stitcher, YouTube and Vimeo.

Twin Cities to celebrate its first 22q at the Zoo

Roya Kebriaei, 3, is the daughter of Meysam Kebriaei, MD, and Amy Kebriaei, DDS. (Photo courtesy of the Kebriaei family)

Roya Kebriaei, 3, is the daughter of Meysam Kebriaei, MD, and Amy Kebriaei, DDS. Roya was born with 22q, a chromosome deletion syndrome that can cause a wide range of recognizable health and developmental problems. (Photo courtesy of the Kebriaei family)

A little-known chromosome deletion syndrome called 22q will be the reason for an upcoming celebration in the Twin Cities. For the first time in Minneapolis-St. Paul, an official group will gather May 17 for “22q at the Zoo” in honor of 22q Worldwide Awareness Day.

Also known as velocardiofacial and DiGeorge syndrome, 22q is a genetic syndrome that can affect every system in the body and cause a wide range of recognizable health and developmental problems. Though little known in some circles, 22q is nearly as common as Down syndrome, affecting 1 in 2,000-4,000 children born, 1 in 68 kids born with heart disease and 5 percent to 8 percent of children with cleft palate.

subscribe_blogThe fifth annual worldwide event, which takes place each year on the third Sunday in May, will be officially recognized at the Minnesota Zoo, 13000 Zoo Boulevard in Apple Valley, one of more than 100 zoos worldwide participating. The event is scheduled for 1-2:30 p.m. and includes a kids’ party, networking for parents and a guest speaker.

Children’s Hospitals and Clinics of Minnesota pediatric neurosurgeon Meysam Kebriaei, MD, and his wife, Amy Kebriaei, DDS, established a local 22q support group made up of teams from Children’s, Gillette and University of Minnesota Masonic children’s hospitals. The couple’s 3-year-old daughter, Roya, was born with 22q.

RSVP to the event by contacting Amy Kebriaei at (218) 349-4050 or [email protected]. Go to 22q.org for more information and to order the official red 22q at the Zoo T-shirt. Proceeds benefit the International 22q Foundation.

A peek inside a music therapist’s cart: What do you do with all that stuff?

This music therapy cart contains instruments, not ice cream.

Erinn Frees and Kim Arter

Some people have a bag of tricks, but the music therapists at Children’s Hospitals and Clinics of Minnesota are lucky to have a whole cart. Since music therapists use music to accomplish nonmusical goals, having the right instruments available to accomplish these goals is important. If you have been to the hospital, you’ve probably seen us pushing around big, white carts or smaller, black boxes full of instruments. Here’s a peek at how we might use all those instruments:

The guitar provides rhythmic energy.

Guitar

This probably is the most-versatile tool we have, and it’s rare for any of us to do a session without one. We use the guitar to accompany much of the music we produce during sessions, and it can provide rhythmic energy, motivation to move or quietly relaxing chords.

Whether we are playing “The Itsy Bitsy Spider” to help slow down a baby’s heart rate or “Call Me Maybe” to promote self-expression in a preteen, the guitar is a must.

 

Music therapists typically carry around quite a few kinds of drums.

Drums 

We typically carry around quite a few kinds of drums. Imagine one patient using a drum to work on reaching his arms over his head, while another patient uses a hand drum to express her frustration and anger about not being able to go home this weekend. The music therapist even can facilitate drum circles with groups of patients, which can release stress and anxiety while providing a sense of group cohesion.

 

Harmonicas can increase breath support for a patient with decreased lung function.

Harmonicas

These also have a variety of purposes. They can increase breath support for a patient with decreased lung function or calm nerves as a patient is encouraged to breathe in and out evenly in order to produce a good sound on the instrument. It can provide a way to improvise for someone who never has played an instrument, which can help a patient express him or herself through music.

 

A wind chime is a great instrument for a child who has a limited range of motion or a severe developmental delay.

Wind chimes

This is a great instrument for a child who has a limited range of motion or a severe developmental delay. This instrument can be placed near any part of a child’s body of which he or she can control movement (fingers, knees, feet, elbows), providing a motivating ring with even the smallest movement.

 

 

A young child may use a xylophone with different-colored bars to learn colors.

Xylophones

These again are extremely versatile instruments. A young child may use a xylophone with different-colored bars to learn colors, while another child may need practice holding onto the small mallet in order increase fine motor control. Another child may find the metallic shimmer of the xylophone’s sound helps him relax. 

Music therapists have a large variety of shakers, including maracas, egg shakers, mini-maracas and fruit/vegetable shakers.

Shakers

We have a large variety of shakers, including maracas, egg shakers, mini-maracas and fruit/vegetable shakers. Shakers are great movement motivators in which a patient can work on grasping or passing the instrument back and forth from one hand to the other. A music therapist might model specific movements for the patient to follow. This requires focus and attention to task.

These are just a few examples of why we might choose a particular instrument to use during a session. We have many more instruments inside our cart, and other reasons for using each of them. We’d love for you to ask us to take a look sometime. We’re sorry; our carts do not contain ice cream (we get asked this question often) — but we think there is something much better inside!

Erinn Frees and Kim Arter are music therapists at Children’s Hospitals and Clinics of Minnesota.

Five Question Friday: Meet Jessica Thon

five_question_friday111In this edition of Five Question Friday, Jessica Thon tells us about the path she has taken from a nurse working in intensive care to a community health nurse involved in home care.

Jessica Thon has been a community health nurse for the past 11 years.

Jessica Thon has been a community health nurse for the past 11 years.

What is your role at Children’s?

I was a registered nurse in the pediatric intensive care unit (PICU) until my son was born with a medical condition and needed skilled-nurse visits after surgery. At this time I was made aware of a great service that I had no idea Children’s provided; it was a great relief as a mom to find out that I would not have to bring my baby into the clinic three times a week for labs and that a Children’s nurse was coming to our home to do nurse checks, labs and collaborate with our physicians. After my son’s services were no longer needed, I pursued a position and have been a community health nurse for the past 11 years.

How long have you worked at Children’s?

This year will be 15 years working for Children’s.

What do you love most about your job?

I am privileged to be a part of a fantastic service provided by Children’s. I enjoy extending the hospital experience into our patients’ homes and providing education on their medical needs.

subscribe_blogWhy did you go into nursing?

When I was teenager, I had surgery and was on a pediatric floor. That moment was when I realized I had an interest in nursing. I have a great sense of empathy and desire to help others.

Do you have a favorite memory from working at Children’s?

I feel every encounter with families is a memory, but most recently I visited one of my patients whom I’ve known since she was 3 years old, from my earlier years working in the PICU. I just recently visited her in her college dorm!

(Bonus question) How do you spend your time outside of work?

I look forward to everything summer! I enjoy spending time with my husband and our two children in our boat.

Road to concussion recovery longer for one twin

Twin sisters Michelle and Adrianna (Photo courtesy of Karen Schlossmacher-Smith)

Twin sisters Adrianna (left) and Michelle suffered concussions 24 hours apart. Since then, Adrianna has suffered two more concussions. (Photo courtesy of Karen Schlossmacher-Smith)

In March 2013, we wrote about twin sisters Adrianna and Michelle, who suffered concussions 24 hours apart. Since that blog post appeared, Adrianna suffered second and third concussions. The girls’ mother, Karen Schlossmacher-Smith, RN, a nurse at Children’s Hospitals and Clinics of Minnesota, writes about Adrianna’s experience coping with traumatic brain injuries.

Karen Schlossmacher-Smith, RN

My daughter, Adrianna, suffered her first concussion after hitting her head on the court during a basketball game in January 2012. Two subsequent concussions led to the start of a long road of recovery, one she still is navigating with the help of Children’s Hospitals and Clinics of Minnesota and its concussion clinic.

At the time of her first concussion, before Children’s had a concussion clinic, Adrianna received a CT scan elsewhere that revealed no bleeding. She performed frequent computer baseline testing until she was cleared about six weeks later.

In January 2013, Adrianna’s head was stepped on during basketball. She experienced blurry vision and was seen by the Children’s Concussion Clinic, where she saw a physical therapist who evaluated gait, endurance and some visual/balance issues. Headaches were minimal. Once again, she was cleared to resume normal activities six weeks later after passing computer, visual and balance testing.

Adrianna’s twin sister, Michelle, followed with a concussion of her own 24 hours after Adrianna’s second had occurred. This, too, was from basketball. Michelle was seen in the ER with extreme light and noise sensitivity and slight headaches. Noise sensitivity plagued her for several weeks and altered her activities and interactions with friends. She was cleared after the same physical therapy, visual/balance and computer testing. But Michelle stopped playing basketball to avoid any further concussions from the sport and is focusing on diving, where this year she placed fifth at the state meet.

On June 25, 2014, Adrianna, who also dives and was attending a camp, smacked the water with her left-front forehead and saw stars. She rested briefly and was told to try again. She did and hit the front of her head again on the water and saw stars but performed the next day. Upon a discussion with the coach about the incident, we noted her right eye was dilated. Fifteen minutes later in the car, she appeared to be fine, with no complaint of headaches.

Shortly after the diving incident, Adrianna was hit on the left side of her face with a ball while playing lacrosse. What followed were occasional days of not feeling well but no obvious eye dilation.

In mid-July, our family took a trip to Colorado and Wyoming. Adrianna became sick immediately after activities and exercise. She was ghostly white, dizzy, nauseated, vomiting, and had extreme headaches, right-pupil dilation and couldn’t stand. She was taken to the ER, where a CT scan was done due to previous injuries. A concussion and altitude issues were examined as the severity of symptoms came on quickly. She slept for most of the next two days.

Adrianna went on to suffer from severe headaches, visual impairment, a dilated right eye, dizziness, and an abnormal gait. She entered Children’s Concussion Clinic again under Mary Koolmo, APRN, and Ann Hickson, MD, an ophthalmologist who specializes in concussions and visual impairment associations. Headaches remained severe, 24/7. She always awoke with a baseline headache of about 4, and then within an hour would be at a scale of 8-10, depending on activity. Basic medications for pain had no effect.

She began working with Katie Gehrz in occupational therapy for visual disabilities and Jenny Henrickson in physical therapy for balance and overall vestibular issues. Henrickson was astute to the drops in blood pressure, dizziness and rapid increased headaches and made a request for Adrianna to see a cardiologist.

She started taking amitriptyline, a black-box drug that was used formally for depression, seizures and headaches. An electrocardiogram (EKG) was done for baseline. She passed out within 24 hours of taking the pill. The pill was slowly advanced as the medical team didn’t think it caused this blood-pressure drop with one dose but Adrianna passed out a second time. She saw Rodrigo Rios, MD, a cardiologist for postural orthostatic tachycardia syndrome (POTS) due to rapid heart rate and passing out. Dr. Rios’ plan was to have Adrianna drink a lot of water — 80-100 ounces is the range we have heard from many in the field — increase salt intake and get to the ground if she felt like she was going to pass out. Upon a third increase, Adrianna passed out again. A side effect of this medication is low blood pressure, and there was a thought that the medication probably exacerbated her POTS. The medication required a slow withdrawal period where she had no pain control due to side effects.

She continued her eye training through Dr. Hixon and to be supported by Gehrz in OT. Gehrz worked on eye exercises, visual perceptual, memory issues and tracking. She was aware of how Adrianna became fatigued with only 5-10 minutes of activities. Adrianna’s eyes would be lively upon arrival then she would look completely drained, turn pale, and headaches increased quickly. Many days, therapy would have to include frequent breaks to try and lower her headache threshold. Sometimes Adrianna would go home and rest for a few hours then return to school.

Starting high school increased the difficulty of dealing with Adrianna’s post-concussive symptoms. She didn’t want to be separated from her friends. School staff mentioned the possibility of home-schooling; it took a lot of time and energy for staff at Adrianna’s school to understand the impact of what she was facing versus that of about 40 other kids with concussions. True visual impairment meant she couldn’t read because she couldn’t see words due to the inability to wear her contact lenses or glasses.

Only a couple of Adrianna’s friends knew she had another concussion. Sometimes it seems like everyone who suffers a blow to the head today is diagnosed with a concussion. Some have no residual symptoms after two days, some have an occasional symptom, and then there are others who are severely compromised to the point that daily activities are altered immensely.

The concussion clinic has added a person on staff to work with school districts in regard to attendance issues, as it can vary in need among students. (Long-term concussion issues can lead to depression and anxiety due to medications and loss of what previously was normal. Adrianna chose to stay involved, paced activities and knew her own limits. Overall, this, as well as having a supportive sister, is what kept her positive.)

One evening, after a routine trip to the concussion clinic, Adrianna was feeling so sick with severe headaches, she was admitted for a short stay and received IV fluids and pain medication to try and counteract the headaches. A CT scan was done to assess any changes since her previous MRI. The fluids had no effect, and the medication relief was brief. Lab results offered up low ferritin and lower vitamin D levels. She was started on some medications to increase these levels with thoughts that increased levels might help with headaches.

Adrianna is in her eighth month since her most recent concussion. Some visual improvement has occurred over the past nine months. She had surgery at Christmastime to drain and clear a mass area near her left nasal-eyebrow region. The surgery performed by Frank Rimell, MD, had its risks, but through consultation with another ear, nose and throat doctor, Barbara Malone, MD, it was felt to be in Adrianna’s best interest to go in and remove the cyst-like matter in hopes of relieving some ongoing pain.

subscribe_blogThe challenges to date: She has had 30-plus weekly occupational and physical therapy visits, and speech therapy with Melanie Gylling, who assists with strategic methods for educational learning, memory and strategic problem solving and organizational skills in daily activities.

Adrianna continues to follow monthly with ophthalmology and neurology with eye testing for visual depth and tracking. The number of missed school days has been a stressor, but she has learned to advocate for herself. Her processing skills from simple to logistical have been hindered with the third concussion. Reading is done with size-20 font, and she has worked up to 10-15 minute intervals. Her school provides notes and tests with enlarged text, but sometimes the tests are read to her. Her books are on audio, and she records notes during class. Audio is somewhat difficult to revert back to for consecutive homework assignments that might later be added by a teacher.

A neurological assessment exam was done to identify areas of learning that Adrianna may need support in educationally now and in the future, as well as in problem-solving issues more strategically in her everyday life. Simple items and tasks that once were simple now have to be re-evaluated to solve. We’re in the process of obtaining/trialing Livescribe, a pen for note taking in class. Adrianna is able to recite back three to four items in a list when asked to recall. She has not been cleared to work on computers yet, though she gets time each day to use Snapchat to communicate with friends.

Adrianna’s visual field is somewhat clear at 8-12 inches from her face. She jumps back if anything comes within this spatial area. Since having surgery, her right eye no longer is dilated as it had been for six months. She went nearly seven months without exercise, other than walking, and since has been cleared for light aerobic exercise on the treadmill and light swim stokes without her heart rate rapidly increasing.

Since using propranolol for headaches at the suggestion of Dr. Rios, Adrianna hasn’t passed out and her headaches have subsided. The million-dollar questions are: Did the mass removal stop the headaches? Does propranolol mask the headaches? And if she comes off the medicine, will headaches return, or is it a combination that turned the tide?

Adrianna has remained positive throughout this ordeal. She passed her driver’s permit test on her 15th birthday, though, unlike her sister, she hasn’t been able to drive. Adrianna knows contact sports no longer will be a daily part of her life. She has helped manage Michelle to a state diving record. Adrianna plans to manage the boys’ basketball team and track and diving teams to stay involved in the sports that once filled her schedule. Her teachers have been supportive, and she has done well in school with no decreased loads, though with extreme effort and time.

Adrianna’s friends rallied for her during surgery, and she quickly has learned how life can change, to appreciate what you have and make the most of it. Live your life, don’t just exist!