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Stories from patients, family, friends and Mayo Clinic staff

Pediatrics

November 8th, 2016

Changing Minds While Learning to Live With Epilepsy

By SharingMayoClinic SharingMayoClinic

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The first time Tehya Mrotek had a seizure during class, she had just begun high school. Most of the faculty and staff at Stewartville High School didn’t know how to respond to Tehya’s condition.

The school nurse recognized what had happened, however. The nurse explained it to Tehya when she regained consciousness from her tonic-clonic episode. But Tehya’s teachers and support staff weren’t very familiar with epilepsy and were not equipped to administer seizure first-aid, says Tehya’s mother, Tamra Mrotek. That was six years ago.

Within three years, not only had all of Tehya’s teachers and administrators become proficient in epilepsy education, but the town of Stewartville had received certification as a Seizure Smart Community from the Epilepsy Foundation of Minnesota.

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Tags: Child and Adolescent Neurology, Dr Katherine Nickels, Epilepsy


October 11th, 2016

Teen Finds a Positive Way Forward After a Brain Cancer Diagnosis

By SharingMayoClinic SharingMayoClinic

Diagnosed with a stage-four brain tumor, 13-year-old Connor Johnson is taking his treatment at Mayo Clinic in stride and looking forward to a future of helping others.

When he was born 13 years ago, Connor Johnson was a "miracle baby,’ according to his parents. Kathleen and Curtiss Johnson had struggled for years to become and stay pregnant. They had given up hope, when they discovered they were nearly four months along.

The miracle of Connor’s life took on new poignancy in the fall of 2015, when the young teen was diagnosed with an aggressive form of childhood brain cancer. Despite the seriousness of the tumor, an intensive treatment regimen at Mayo Clinic’s Rochester campus involving brain surgery and proton beam therapy, provided Connor and his family the promise of a brighter future.  Read the rest of this entry »

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Tags: Dr. Amulya Nageswara Rao, Mayo Clinic Cancer Center, Mayo Clinic Children's Center, Medulloblastoma, Proton Beam Therapy


August 3rd, 2016

Healing Baby Lucas’ Heart With His Own Cells

By SharingMayoClinic SharingMayoClinic

A Mayo Clinic research team led by Timothy Nelson, M.D., Ph.D., is using Lucas Gutman’s own stem cells to try and save him from needing a heart transplant later in life. Jennifer Gutman calls the day doctors diagnosed her youngest son, Lucas, with hypoplastic left heart syndrome the worst day of her life. The severe heart defect, sometimes referred to as HLHS, was uncovered during what Jennifer and her husband, Brian, thought would be a routine ultrasound.

The startling news brought immediate fears for Lucas’ future.

Determined to help Lucas, Jennifer’s sister-in-law, a physician, reached out to medical colleagues for advice. One of the phone calls she made led her to Timothy Nelson, M.D., Ph.D., at Mayo Clinic in Rochester, Minnesota. Connecting with Dr. Nelson and his team has made the long-term outlook for Lucas and his family considerably brighter.  Read the rest of this entry »

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Tags: clinical trials, Dr Timothy Nelson, Hypoplastic Left Heart Syndrome, Karen Miller, Mayo Clinic Children's Center, regenerative medicine, research


July 23rd, 2016

‘All We Want Is for Evie to Reach 100 Percent of Her Potential’

By SharingMayoClinic SharingMayoClinic

Evie McLeish at Mayo Clinic Proton Beam Therapy Center. The night before 8-year-old Evie McLeish’s brain surgery, her Mayo Clinic neurosurgeon David Daniels, M.D., Ph.D., told her parents, "I don’t want you to think of this as the end. This is just the beginning of a marathon."

The procedure was the start of Evie’s long-term care plan for treatment of a brain tumor. Along with the brain surgery, that plan included chemotherapy and radiation therapy. Due to her age and the location of her tumor, though, her doctors recommended Evie receive proton beam therapy instead of conventional radiation therapy.

The timing was right. Mayo Clinic had just begun a new Proton Beam Therapy Program at its Rochester, Minnesota, campus. And not only was this unique treatment readily available to Evie, it was relatively close to her family’s home in Ankeny, Iowa, just a three-hour drive away.

"We were dealt a big blow with Evie’s tumor," says her mother, Ali McLeish. "But there have been silver linings in this whole thing, including that we could get proton beam therapy without having to travel across the country."  Read the rest of this entry »

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Tags: brain tumor, Dr David Daniels, Mayo Clinic Children's Center, Medullablastoma, Proton Beam Therapy


July 8th, 2016

Desperate for Relief From Pain, Teen Considered Amputation. Today, He’s Back on Both Feet

By SharingMayoClinic SharingMayoClinic

The Pediatric Pain Rehabilitation Program gave Connor Bleakley the confidence to function at a very high level.When he was 16 years old, Connor Bleakley asked his father, David, if he could have his foot amputated. David thought it was probably a good idea.

By that point, Connor had lived with severe pain in his foot and ankle for years. He had gone through numerous treatments to relieve the discomfort, with little effect. A sophomore in high school, Connor was unable to walk without crutches due to intense pain. So when, in desperation, Connor asked to have his foot taken off, David didn't see any other choices.

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Tags: Dr Tracy Harrison, Mayo Clinic Children's Center, Pain Medicine, Pediatric Pain Rehabilitation Program


June 25th, 2016

‘How’d We Get So Lucky?’ — Proton Beam Therapy Available at the Right Time for Jackson

By SharingMayoClinic SharingMayoClinic

Proton beam therapy was available at the right time for Jackson Fisher.

For two weeks, 14-year-old Jackson Fisher was plagued by headaches, double-vision, nausea and weight loss. His parents, Michelle and Patrick Fisher, weren’t sure what was wrong. But when Jackson came home one evening completely exhausted after lacrosse practice, they decided it was time to find out what was going on. The next day, they took Jackson to the emergency room.

What doctors found during that ER visit triggered a series of events the Fishers never could have anticipated and that eventually led the family to Mayo Clinic’s Proton Beam Therapy Program, where Jackson received treatment for a brain tumor.

“Every single person we’ve met at Mayo Clinic has been amazing, and we feel like we were meant to meet them,” says Michelle. “His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second guessed his care. Being at Mayo Clinic has been the most positive experience of our lives.”  Read the rest of this entry »

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Tags: Dr. Amulya Nageswara Rao, Dr David Daniels, Dr Nadia Laack, Nancy Heinzelman, Proton Beam Therapy, Randy McKeeman


May 29th, 2016

Limb Lengthening and Regeneration Clinic Offers Hope for Amarachi

By SharingMayoClinic SharingMayoClinic

Amarachi talks about her experience with Blount's disease. Just six months ago, every step for Amarachi Austin-Okoh was filled with pain. The 11-year-old from Nigeria had enough trouble walking. Things like running, playing tag or playing basketball seemed like a dream. But now they're things she can look forward to, thanks to a life-changing trip to Mayo Clinic.

Amarachi has a condition called Blount's disease. Her mother, Modesther Austin-Okoh, says the family discovered the condition with Amarachi was just two years old.

Todd Milbrandt, M.D., an orthopedic surgeon at Mayo Clinic Children's Center, describes Blount's disease as "a failure of the growth plate to grow on the inside of the knee, specifically, the top part of the tibia." In Amarachi's case, her disease progressed to the point where she had severely bowed legs.

"We wish we could have seen her walk and be like other children," her mother says. "We were always crying for her."  Read the rest of this entry »

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Tags: Blount's Disease, Dr S Andrew Sems, Dr Todd Milbrandt, Limb Lengthening, Mayo Clinic Children's Center, Orthopedic Surgery


March 4th, 2016

Hope for ‘Happy, Healthy Life’ Thanks to Answers for ‘Never Seen Before’ Problems

By SharingMayoClinic SharingMayoClinic

Mallory Henthorn's family found hope for a rare condition at Mayo Clinic.

Written by Bethany Henthorn

Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS – omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. After Mallory’s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System – Red Cedar in Menomonie.

We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth. This monitoring involved several tests, ultrasounds and appointments. Mallory was born at 38 weeks' gestation at Mayo Clinic Hospital, Methodist Campus, on Oct. 19, 2014.

The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. It was explained that Mallory’s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect.

Mallory spent her first 83 days at Mayo Clinic. Most days were in the Neonatal Intensive Care Unit, but the last few weeks were on the general pediatric floor.  Read the rest of this entry »

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Tags: Cloacal Exstrophy, labor and delivery, Maternal Fetal Medicine, Mayo Clinic Children's Center, NICU, obstetrics and gynecology, OEIS, Patient Stories, Prenatal Monitoring


February 19th, 2016

Many Hands Make Hopeful Work for Nielsen Boys

By SharingMayoClinic SharingMayoClinic

NielsenFamily805"There is something wrong" are words no expectant parent ever wants to hear. And for Ryan and Kathy Nielsen, they came just 20 weeks into Kathy's first pregnancy. The couple was eagerly awaiting the arrival of their child and had been busy getting their home ready. Then, doctors diagnosed their unborn son, Aaron, with congenital diaphragmatic hernia during Kathy's 20-week ultrasound. After the shock wore off, the couple began a search for answers that ultimately led them to Mayo Clinic's Rochester campus.

"We debated on a number of facilities after Aaron's diagnosis, but we ended up coming to Mayo, because they offered an ECMO (heart and lung machine) as part of his treatment if he were to need it," Kathy says. "The other medical facilities did not."  Read the rest of this entry »

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Tags: Be the Match, bone marrow transplant, Dr Shakila Khan, Neonatal Intensive Care, transplant, Wiskott-Aldrich syndrome


October 30th, 2015

Putting Kieran’s Heart Back Where it Belongs

By Hoyt Finnamore HoytFinnamore

Baby Kieran is health today thanks to pediatric heart surgery at Mayo Clinic.Caitlin Veitz never takes for granted just how special her daughter Kieran is. “She’s laid back, happy, wonderful,” Caitlin says.

The circumstances around her birth, however, were not as serene.

At her 20-week ultrasound, Caitlin learned her baby's heart was not where it was supposed to be and that it had developed outside of the chest wall. The condition, called ectopia cordis, is "one of the, if not the, most rare congenital heart defects,” according to Joseph Dearani, M.D., a Mayo Clinic pediatric cardiac surgeon.

“We didn’t have any idea that anything like that could happen," says Caitlin. "It was scary. The odds were stacked against her.”  Read the rest of this entry »

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Tags: Cardiac Surgery, Congenital Heart Defect, Dr Joseph Dearani, Ectopia Cordis, Mayo Clinic Children's Center, 3d printing, Cardiology, Dr Carl Rose, Dr Christopher Moir, Dr Jane Matsumoto, Obstetrics, Pediatrics, Radiology


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