Category Archives: Featured

From hopelessness to triumph: Eliana’s battle with chronic pain

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Eliana, shown here in June 2014, was diagnosed with chronic pain disorder. (Photos courtesy of Cami Vogt)

Cami Vogt

Our story is not one of acute trauma or even an emergency. For some it may seem less than dramatic. But we hope our story will give courage and hope to all those other parents who cope with chronic illness in their child.

Our story is of a long journey; it tells of the amazing fortitude of one little girl, the perseverance of her siblings and the compassionate and enduring care of a team of experts.

Eliana, 8, visited Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

Eliana, 8, visits Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

We came to the pain and palliative care clinic at Children’s Hospitals and Clinics of Minnesota in January 2013 after two lonely and frustrating years of trying to find out the source of our little girl’s pain.

Eliana, then 6 years old, suffered almost constantly from severe headaches, stomach pain, deep body aches, chest pain and debilitating fatigue. We sought out every specialist we could think of, but there were no answers, and no freedom from her suffering. When our neurologist at Children’s, Elizabeth Gilles, MD, gave us the opportunity to consider this unique and groundbreaking clinic, we were skeptical. We had tried so much and were so tired. But we knew we had to try — for Eliana.

And so we found hope. That hope came from a team of experts who were willing to rally around not just Eliana, but our entire family. They showed us that they understood that chronic pain affects the entire family, not just the child. They validated her pain, our experiences and fears. They also gave us a diagnosis: chronic pain disorder.

Eliana continues to battle chronic pain and improve.

Eliana continues to battle chronic pain and improve.

But most of all, they showed us the effectiveness of what a team of specialists in pediatric pain could accomplish. At any one time, we may have up to five people from the team working with us. That lonely feeling of the past is gone; it’s amazing how much stronger you can be when you’re not alone.

We still are on this journey. Eliana has turned two whole years older since we first arrived at the clinic, which celebrated the grand opening of its new space this month. She has worked so hard and gotten so much better. But chronic pain in children is complicated and requires perseverance. The true hero in this story is our Eliana Faith, and we stand in awe of her fortitude.

None of this would have been possible without her amazing pain team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic. We are indebted to Stefan Friedrichsdorf, MDKavita Desai, Ph.D; physical therapist Andrew Warmuth, nurse Donna Eull, massage therapist Candace Linares, social worker Cindy Daughtry and receptionist Alison McQuade (our first line of defense!).

Thank you for believing in us, for partnering with us and for giving us hope. Let the journey continue — together!

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About the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at Children’s – Minneapolis

Pain of any kind not only is disruptive to the life of a child, but also to the child’s family. Children’s has the largest, longest-running pain and palliative and integrative medicine program in North America. Children’s combines the best and most-appropriate pain medicines with the best integrative therapies (like massage, aroma therapy and biofeedback) to help alleviate kids’ pain. The pain clinic is made up of a diverse group of providers, including doctors, nurses, physical and massage therapists, psychologists and social workers – all of whom rally around children and their families so they can heal.

Get screened for type 1 diabetes at Twin Cities walk

The McNeely Pediatric Diabetes Center at Children’s – St. Paul is part of an international research network called Type 1 Diabetes TrialNet. It currently is screening relatives of individuals with type 1 diabetes (T1D) to see if they are at risk for developing the disease.

subscribe_blogThe TrialNet research study offers a blood test that can identify an increased risk for T1D up to 10 years before symptoms appear.

TrialNet offers screening to:

  • Anyone ages 1-45 with a parent, brother, sister or child with T1D.
  • Anyone age 1-20 with a niece, nephew, aunt, uncle, grandparent, half-brother/sister or cousin with T1D.

Children’s will host a free screening event from 7:30-10:30 a.m. Feb. 21 at the JDRF Walk to Cure Diabetes at the Mall of America. For more information or to refer eligible families, contact Brittany Machus, clinical research associate, at [email protected] or (651) 220-5730.

Mom grateful for Children’s care before, after daughter’s double lung transplant

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason and her daughter, Kali, 8 (Photos courtesy of Janice Eason)

Janice Eason

My dreams came true 8½ years ago when I became a mother to Kali Grace, the most beautiful baby girl. But little did I know how many people I would need to keep my dreams alive.

My water broke at 22 weeks, and Kali had to be delivered at 24 weeks. She came into this world weighing 680 grams, less than 1½ pounds, and with underdeveloped lungs. Before I could even see her, she was whisked away to the neonatal intensive care unit at Children’s Hospitals and Clinics of Minnesota, where she would spend the first eight months of her life.

Kali's baptism

Kali’s baptism

Kali was always one of the most critical patients on the unit and liked to keep all of her doctors, nurses and therapists on their toes to be sure they could handle anything. Her team did handle everything and more that Kali gave them. She was cared for greatly, and everything was done to be sure Kali was always getting what she needed. And her team always made sure that as her mother I was heard.

I was told that Kali would need to go home for hospice care if she didn’t receive a double lung transplant. We found a transplant center in Houston to perform the difficult surgery do the transplant. After a delicate recovery period, we came back home just after Kali celebrated her first birthday.

While there were other hospitals, doctors and nurses that helped care for Kali, Children’s, including the team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic, always has been the place where we received the best and greatest care.

Kali at Children's

Kali at Children’s

Kali is 8 now, but we have never been far from Children’s. We’re here multiple times a month for appointments and have a few hospital stays a year dealing with Kali’s ongoing conditions.

The Children’s staff have made Kali feel so comfortable with all she has to deal with in her life, and she loves everyone at the hospital who cares for her. I feel so blessed to have such a wonderful place to call our second home that is able to make my child feel like such a normal girl given all of her circumstances. We forever will be thankful to everyone who makes Children’s such an amazing place.

Kali continues to visit Children's for checkups on a regular basis.

Kali continues to visit Children’s for checkups on a regular basis.

Measles and how to protect against it

A rash forms three to five days after other measles symptoms start. (iStock Photo)

A rash forms three to five days after other measles symptoms start. (iStock Photo)

Joe Kurland, MPH

Something strange has been happening over the past few years. Infectious diseases are fighting back against the tools that have previously succeeded in protecting us all. In 2000, the U.S. announced that measles had been eliminated from the country. Our tools were so effective and some vaccine-preventable diseases were so rare, that they were all but unknown to a generation of parents and doctors. Sadly, these tools became a victim of their own success.

Measles

Measles is caused by a virus. Sometimes people say “it’s just a virus,” which ignores the fact that some of the most dangerous germs we know are viruses, measles included. It gets into your body when you inhale droplets sneezed or coughed out by someone who’s infected and is considered to be one of the most contagious diseases of which we known, with research showing that, on average, one sick person will infect as many as 18 people who are not protected. Nine out of 10 unimmunized people exposed will get measles because it is that easy to catch. This is partly because measles is an airborne virus; it can survive and infect other people who simply walk through the same room as an infected person. And the infected person doesn’t have to be in the room. The droplets are so small that the air in a room stays infectious for up to two hours after the ill person has left.

OK, measles spreads easily. But is it really that scary? What does it do?

After you’re exposed to measles, it takes between seven and 14 days to develop signs of the infection. The signs include high fever, cough, runny nose and red, watery eyes. You get a rash three to five days after those symptoms start. At first it looks like flat, red spots that show up on your head by your hairline and then spreads like a bucket of rash downwards. It covers your face, neck, chest, belly and finally your arms, legs and feet. The rash may be small, individual, raised, red bumps with flat tops, or they can join into large patches. Four days before the rash shows up, you can spread the virus to others.

For many people, the rash and fever go away after a few days, but for some there are complications. These can vary in severity from mild effects like ear infections and diarrhea to more severe symptoms such as pneumonia and swelling of the brain (encephalitis). Pneumonia is the most common (1 in 20 cases) cause of measles-related death in children, and encephalitis, while less common (1 in 1,000 cases), can cause seizures which may lead to deafness or mental disabilities. For every 1,000 children who get measles, one or two will die from it. Infections in pregnant women may result in premature delivery or a low-birth-weight baby.

You have my attention. What can I do if I’ve never had my shots and may have been exposed?

In the U.S., there are several factors working in a person’s favor:

A modern health system: Clinicians watch for measles and other diseases. If a case is found, they are required, by law, to report it to their local public health departments. The public health experts (epidemiologists) interview the sick person, notify anyone who may have been exposed and work to stop measles in its tracks by having people stay home while potentially contagious. 

Effective medication: There are no antiviral medicines available to treat measles. People exposed to the sick person can protect themselves if they act quickly. If the measles vaccine (MMR shot) is given in the first few days after exposure, it can stop the virus from making you ill.

Community immunity: This is perhaps the most effective tool we have. Community immunity (also known as herd immunity) stops a disease outbreak like a firewall by stopping the virus from reaching new hosts. If you surround an infected person with people who can’t get infected with measles — because they are immune, immunized or were previously infected — the virus cannot spread and the outbreak will end. Community immunity is especially important for families where someone is immune-suppressed or who have children younger than 1 year old who are too young to be immunized.

subscribe_blogSo, the vaccine is the best protection against measles. But some say the MMR vaccine is safe, while others say it is risky and may harm my child. What’s true?

All medical treatments have some risk. But after many studies examined MMR (measles, mumps and rubella) and other vaccines, the final word is the MMR vaccine is safe and rarely causes a severe allergic reaction.

And there is no link between the MMR vaccine and autism spectrum disorders. The association between the two repeatedly has been investigated, and no study has shown results linking the vaccine to the symptoms. In fact, newer research into autism suggests that it’s the result of unusual networking in the fetal brain in the weeks following conception.

What were you saying about our tools being a victim of their own success?

Because the vaccines and immunizations our medical system uses are so effective, the scary, deadly diseases they prevent are now rare. Paralytic polio, babies born with congenital rubella syndrome, tetanus, diphtheria are unknown and forgotten to an entire generation of parents. Because the effects of these diseases were forgotten, the tiny risks for side effects from the vaccines became the focus of concern. Combined with questionable sources in media and on the Internet, fear of vaccines grew. Pockets of underimmunized communities sprung up in cities across the U.S. and provided a foothold for vaccine-preventable diseases, imported from countries with lesser health systems, to resume their toll on a new generation of susceptible children.

But I heard the anti-vaccine community is pretty small and most people follow their pediatricians’ recommendations.

It’s true. Nationally, the number of parents electing to refuse vaccinations is low; however, in some communities, vaccine coverage is less than in war-ravaged Sudan. And this gives the diseases a chance to attack. Measles is so contagious that outbreaks may occur if any more than 5 percent of the community is unvaccinated. Some schools in Oregon and California have reported vaccine rates of 50 percent to 69 percent when anything less than 95 percent vaccinated has great potential for an outbreak.

Vaccines have been so effective that we lost our fear of the diseases they prevented. Amnesia created doubt and hostility towards the utility and need for protection. It is up to parents to protect not only our own children against measles, but in doing so, know that we protect others, too.

For more information:

Joe Kurland is a vaccine specialist and infection preventionist at Children’s Hospitals and Clinics of Minnesota.

Introducing new podcast, ‘Children’s Pedcast’

Starting today, we’re happy to share with you our new podcast, “Children’s Pedcast,” a conversation about pediatrics.

subscribe_blog“Children’s Pedcast” — “Pedcast” for short — is a weekly podcast by Children’s Hospitals and Clinics of Minnesota about pediatric health information, issues and concerns, featuring guests made up of experts from Children’s, The Mother Baby Center, Midwest Fetal Care Center and other individuals connected to Children’s, including doctors, nurses, other health care experts, patients and patient families.

The show is conversational and loose with a goal of providing information and an enjoyable, entertaining listener experience.

A new episode is available for download each Monday and can be heard on iTunes (soon), Podbean, YouTube, Vimeo, all of Children’s social media channels and everywhere podcasts are available.

Episode 1: Dr. Stefan Friedrichsdorf on pain, palliative and integrative medicine

Meet Katie

What Katie loves most about Children’s is the music therapy program.

What Katie loves most about Children’s is the music therapy program.

When exploring the impact of supporting a child’s tomorrow, we went straight to the source: our patients. We asked several to share how Children’s has played a role in their life today, and what they look forward to in their tomorrow. This is what we learned.

Q4_mighty_buttonName: Katie

Age: 5

Hometown: Eden Prairie

Katie was rushed from Abbott Northwestern Hospital to Children’s after she was born 15 weeks early. She only weighed a pound and had to stay in the neonatal intensive care unit (NICU) for 99 days. According to her mom, she is now happy, healthy and doing wonderfully.

When Katie grows up, she wants to be a dancer. She loves to dance.

What Katie loves most about Children’s is the music therapy program. Her brother, a member of our Youth Advisory Council (YAC), even helped to design a music cart for the music therapists at Children’s.

Define safe boundaries for kids and play

Encouraging the learning and exploration process will increase your child’s confidence and creativity, and defining safe boundaries and rules will keep you both happy. (iStock photo / Getty Images)

Encouraging the learning and exploration process will increase your child’s confidence and creativity, and defining safe boundaries and rules will keep you both happy. (iStock photo / Getty Images)

By Dex Tuttle

Not long ago, I watched my toddler daughter, Quinnlyn, as she played with her favorite blocks. She picked one up, stacked it carefully on top of another, and repeated until she had a tower four or five blocks high. Without warning, she pummeled the tower while sounding her signature high-pitched battle cry, sending blocks flying in all directions. She immediately seemed to regret not having a tower and ran to pick up the blocks to start the process over.

Young children begin to understand their world by cause-and-effect experimentation. Psychologist Jean Piaget was one of the first to put this concept into organized thought.

This behavior is apparent with my daughter: “If I stick my hand in the dog’s water dish, my shirt gets wet. This pleases me and I must do this each morning, preferably after mommy helps me put on a clean shirt.”

Then, something occurred to me as I watched Quinnlyn build and destroy her tower; there is a trigger missing in her young mind that could change her behavior: She does not understand consequence, the indirect product of an effect.

I began to notice this in her other activities as well. At dinnertime, we give her a plastic fork and spoon so she can work on her motor skills. If she’s unhappy with how dinner is going, she throws her fork and spoon on the floor in a fit of toddler rage. She is then immediately puzzled by how she’ll continue her meal now that her utensils are so far away.

Subscribe to MightyAs frustrating as toddler tantrums can sometimes be for parents, I’d love to be in my daughter’s shoes. Who wouldn’t want the satisfaction of taking all those dirty dishes that have been in the sink for two days and chucking them against the wall? That decision, of course, would be dangerous and reckless and I have no desire to clean up such a mess. And, with no dishes in the house, I’d be forced to take a toddler to the store to shop for breakable things; not a winning combination.

There’s an important lesson here for safety-minded parents: Kids will explore their environment in whatever way they can. It’s like the feeling you get when you find a $20 bill in the pocket of a pair of pants you haven’t worn in months, or when you discover the newest tool, gadget or fashion. For toddlers (and us adults), it’s fun finding new things and learning new skills; it’s motivating and creates a feeling of accomplishment. However, the cognitive skills of a toddler haven’t developed beyond that cause-effect understanding.

This is why we need to consider the environment in which our young children play. I recommend giving them plenty of space and opportunity to experiment without worry of the consequence:

  • Make sure stairs are blocked off securely and unsafe climbing hazards are eliminated; encourage kids to explore the space you define.
  • Create a space to explore free of choking hazards, potential poisons and breakable or valuable items; leave plenty of new objects for children to discover, and change the objects out when the kids seem to grow tired of them.
  • Allow children to fail at certain tasks; be encouraging and positive without intervening as they try again.
  • If possible, discuss their actions and consequences with them to help them understand the reason for your rules.

Encouraging the learning and exploration process will increase your child’s confidence and creativity, and defining safe boundaries and rules will keep you both happy.

At Children’s Hospitals and Clinics of Minnesota, we care for more pediatric emergency and trauma patients than any other health care system in our region, seeing about 90,000 kids each year between our St. Paul and Minneapolis hospitals. Children’s Hospital in Minneapolis is the area’s only Level I pediatric trauma center in a hospital dedicated to only kids, which means we offer the highest level of care to critically injured kids. When it’s critical, so is your choice – Children’s Level I Pediatric Trauma Center, Minneapolis.

Dex Tuttle is the injury prevention program coordinator at Children’s Hospitals and Clinics of Minnesota and the father of a curious and mobile toddler. He has a Master of Education degree from Penn State University.

Five Question Friday: Terrance Davis

Five Question FridayIt’s Friday, and what better way to celebrate the end of the week than with a Five Question Friday profile? Meet Terrance Davis, who works on our Environmental Services team within the Minneapolis Surgery department.

Terrance Davis has worked at Children's for 25 years.

Terrance Davis has worked at Children’s for 25 years.

How long have you worked at Children’s?

I have worked here for 25 years.

Describe your role.

I clean surgery rooms between cases and stock supplies.

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

I have a few favorites:

  • The surgery staff surprised me with a 50th birthday celebration.
  • Each annual craft show, which is so much fun
  • Gathering for the Environmental Services Week events

What do you think make kids great?

I have a couple answers for this one. First, they can smile at you and make your entire day better. Second, they have great energy, which can be contagious.

What is one interesting fact about you?

I was married in Las Vegas at the top of the Stratosphere tower with local TV personality “Fancy Ray” McCloney standing with me as my best man.

Five Question Friday: Kelly Patnode

Five Question Friday

Meet Kelly Patnode, patient access specialist at our St. Paul hospital, who has a love for the Minnesota State Fair.

When she isn't working in our St. Paul hospital, Kelly Patnode enjoys reading and helping out at the Minnesota State Fair.

When she isn’t working in our St. Paul hospital, Kelly Patnode enjoys reading and helping out at the Minnesota State Fair.

How long have you worked at Children’s?

I have worked at Children’s in St. Paul for 36 years.

What drew you to Children’s?

I started in St. Paul when it was on “the hill” (across the highway from our current location) as a volunteer at the age of 13. I was a volunteer for four years. I went to school for medical office occupations, but there were no openings at that time. When I was talking to someone at Children’s, they said there was an opening for a health unit coordinator. I asked what that person did, and they explained that person works at the main desk on the floors. I asked if that was similar to a ward secretary, and they said yes. I said, “Well, I have done that job for four years, so I think I could do it!”

Subscribe to MightyWhat is a typical day like for you?

My typical day starts with making a coffee. It is just the right way to start of the day. I then clean and restart all the computers, restock supplies and then either sit at the emergency room desk and start answering the phone, make calls for the providers, put together a chart or break down a chart or start with registering patients who come to be seen in the ER.

What do you love most about your job?

Every day is a different day. What I did yesterday at my job may be totally different than the day before or today. If I can get a smile out of a patient and their parents, it just makes the day better.

What do you enjoy doing outside of work?

Usually I read books. But during the summertime I am busy because I also work at the Minnesota State Fair, selling box-office tickets for grandstand shows and pre-fair tickets. I have been working there for 38 years. So when I am not working at the hospital, I am at the fair. I am actually taking vacation from the hospital to work full time at the fair this year.

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