Post cancer, post rotationplasty, teen athlete continues to excel
The ball leaps off the metal bat with an unmistakable “ping” that denotes good contact. Miles Goldberg runs to first base, from which the 13-year-old will soon contemplate – and safely execute – a steal of second. Miles is used to transitioning naturally with the seasons from football to hockey to baseball. This year, however, has been different. Every hit, catch, and glide across the ice has had far more meaning to the eighth-grader, who recently completed osteosarcoma treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. His treatment included a wide resection of his right proximal tib...
Source: Thrive, Children's Hospital Boston - December 6, 2016 Category: Pediatrics Authors: Saul Wisnia Tags: Our Patients’ Stories Dana-Farber/Boston Children's Cancer and Blood Disorders Center osteosarcoma rotationplasty Source Type: news

Catching up with Kenslie: Life after  midaortic syndrome surgery
We last saw Kenslie Shealy in the spring of 2015, as she was settling back into life at home in South Carolina after a long stay at Boston Children’s Hospital. Kenslie, now 4, had emergency surgery for midaortic syndrome (MAS), a rare condition that affects the heart and kidneys. Untreated, the condition can lead to damage in the brain, intestines and limbs. At Boston Children’s, Kenslie’s multi-disciplinary team included specialists in cardiology, interventional cardiology, nephrology, transplant and vascular surgery, interventional radiology, genetics and rheumatology. She recovered well after her f...
Source: Thrive, Children's Hospital Boston - December 5, 2016 Category: Pediatrics Authors: Erin Horan Tags: Our Patients’ Stories Dr. Deborah Stein Dr. Diego Porras Heung Bae Kim midaortic syndrome Midaortic Syndrome and Renovascular Hypertension (MAS/RVH) Program Source Type: news

Overcoming IBD:  ‘I am bigger than my Crohn’s disease.’
Like most high school seniors, Camden Vassallo of Norwell has a very busy schedule. The 17-year-old Thayer Academy student manages a heavy academic schedule, works at the local YMCA, is a two-sport, three-season athlete and is looking ahead to college. But like nearly 800,000 children and adults in the U.S., Camden is also managing Crohn’s disease — a chronic inflammation of the gastrointestinal tract. The condition causes intense stomach pain, diarrhea, fatigue, bloody stool and weight loss in severe cases. Although the disease has uncomfortable and sometimes embarrassing symptoms, Camden says Crohn’s hasn...
Source: Thrive, Children's Hospital Boston - December 1, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: Diseases & Conditions Our Patients’ Stories Athos Bousvaros Crohn's disease IBD Inflammatory Bowel Disease Inflammatory Bowel Disease Center Source Type: news

Overcoming IBD:  “I am bigger than my Crohn’s disease.”
Like most high school seniors, Camden Vassallo of Norwell has a very busy schedule. The 17-year-old Thayer Academy student manages a heavy academic schedule, works at the local YMCA, is a two-sport, three-season athlete and is looking ahead to college. But like nearly 800,000 children and adults in the U.S., Camden is also managing Crohn’s disease — a chronic inflammation of the gastrointestinal tract. The condition causes intense stomach pain, diarrhea, fatigue, bloody stool and weight loss in severe cases. Although the disease has uncomfortable and sometimes embarrassing symptoms, Camden says Crohn’s hasn...
Source: Thrive, Children's Hospital Boston - December 1, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: Diseases & Conditions Our Patients’ Stories Athos Bousvaros Crohn's disease IBD Inflammatory Bowel Disease Inflammatory Bowel Disease Center Source Type: news

Newborn screening and gene therapy save baby from ‘bubble boy’ disease
Levi with his Dad, Phillip, and Colton with his mom, Kala (photo by Amie Van Amberg) Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little thought to the routine heel prick of newborn screening. At 23 and 24, she and her husband, Phillip, were high school sweethearts starting a family. Two weeks later, a Michigan state health official called. Something came up on Levi’s screen. You need to bring him in right away. Three weeks and numerous blood draws later, the Looks had a diagnosis: Severe combined immune deficiency (SCID) — ...
Source: Thrive, Children's Hospital Boston - November 30, 2016 Category: Pediatrics Authors: Irene Sege Tags: Our Patients’ Stories Research and Innovation bubble boy disease Dana-Farber/Boston Children's Cancer and Blood Disorders Center Dr. Sung-Yun Pai gene therapy SCID severe combined immune deficiency stem cell transplant Source Type: news

Second opinion gives unborn baby second chance
Seven-month-old Charlotte Bent is hitting all of her developmental milestones — smiling, laughing, playing peek-a-boo, bearing weight on her legs. Her parents, Jennifer and Keith, are overjoyed. “It’s a complete 180-degree turn from where we thought we would be this time last year,” says Jennifer. After struggling to conceive their second child, the couple was thrilled when Jennifer became pregnant. The results of genetic testing were normal and confirmed they would be welcoming a daughter in April. Jennifer felt the baby’s first kicks on Nov. 23, 2015. The next day, she was scheduled for an anatomy scan. “At f...
Source: Thrive, Children's Hospital Boston - November 29, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Advanced Fetal Care Center bilateral perisylvian polymicrogyria Dr. Benjamin Warf Dr. Christopher Elitt Second opinion ventriculomegaly Source Type: news

Giving thanks: Stories of volunteerism, gratitude and giving back
Thanksgiving Day is a time rich in family, gratitude and appreciation. In honor of the holiday, we are celebrating the patient families who have traveled through our doors and the selfless acts of kindness and volunteerism that follow. Donating platelets and cycling for a cause Ten years ago, Adam Nussenbaum’s son Max was treated at Boston Children’s and overcame a life threatening illness. Today, Adam gives his time — and platelets — to help those in need, and he is doing so in celebration of Max; his daughter Kate, who donated her bone marrow to help her brother; and the clinicians, who made his...
Source: Thrive, Children's Hospital Boston - November 24, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: Our Patients’ Stories bone marrow transplant cerebral palsy Dr. James Kasser Family Advisory Council Heart Center Kawasaki disease Learning disabilities NICU patient partner platelet donation scoliosis Source Type: news

Experience Journals: Grateful for the families at Boston Children ’s Hospital
Danny Deitz, above with his parents, is a heart transplant patient of Dr. Elizabeth Blume’s The Experience Journals Project shares the stories of kids, teens, and health care providers at Boston Children’s Hospital. This project features the collective wisdom of over 250 families and 150 health care professionals. While each Journal has a different topic, every Journal includes providers who are grateful for the chance to work with the amazing children and families at Boston Children’s Hospital. Here are some of their experiences, in their own words: Thank you I think probably the most challenging and the most ...
Source: Thrive, Children's Hospital Boston - November 23, 2016 Category: Pediatrics Authors: Erin Horan Tags: Our Patients’ Stories Experience Journal Source Type: news

Elijah laughs: Augmentative communication device helps boy with cerebral palsy
A computer voice utters a simple statement. Sometimes, it’s “My name is Elijah.” Other times, “My parents are Brian and Leah,” or “I feel happy.” For the first time in his life, Elijah can tell his mother, ‘Yes, I want a hug.’ Another phrase — “I love the Patriots” — is often repeated. And a brown-eyed, curly-haired kindergartener’s eyes light up. He smiles and laughs out loud. It’s a whole new world for 5-year-old Elijah Gauthier, says his mom, Leah. Leah and her husband Brian have taken Elijah, who has severe cerebral palsy and is non-verbal, to the Augmentative Communication Program...
Source: Thrive, Children's Hospital Boston - November 22, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Augmentative communication Boston Children's at Waltham cerebral palsy Source Type: news

Young adult cardiac patient shares tips for ‘going it alone’ in the hospital
Zach with Sam the “Pawprints” dog Zachary Harper, 23, a young adult living with congenital heart disease, receives care at the Boston Children’s Hospital Heart Center. I was recently admitted to Boston Children’s Hospital. Though I am no stranger to these visits, they are still draining — both physically and mentally. You see, seven years ago, when I was 16, I went into sudden cardiac arrest at school. After an array of tests, my doctors concluded that a virus had attacked my heart. But five years later, another event led to a new diagnosis: arrhythmogenic right ventricular cardiomyopathy, or ARVC, ...
Source: Thrive, Children's Hospital Boston - November 21, 2016 Category: Pediatrics Authors: Zachary Harper Tags: Our Patients’ Stories Heart Center Heart Center’s Electrophysiology Program Pawprints Program Source Type: news

Private Parts: Things moms of newborn and toddler boys need to know
For a lot of moms — those who have daughters, or haven’t experienced the nuances of baby boys — caring for a newborn and toddler boy’s “private area” can be a bewildering experience. What should everything look like? Why is my son’s privates swollen? How do I clean the area?  These are commonly asked questions but topics that are not commonly discussed outside the pediatricians office. “I remember when my son was born and worrying if everything looked normal,” recalls Elizabeth, mom of an 18-month-old toddler boy. “That area was totally foreign to me and I’m someone who is not...
Source: Thrive, Children's Hospital Boston - November 17, 2016 Category: Pediatrics Authors: Maureen McCarthy Tags: circumcision Department of Urology Erin McNamara Hernia MD Undescended testicle Source Type: news

For teen with epilepsy, nurses are like a second family
When Emma Johnston steps onto 9 Northwest at Boston Children’s Hospital on a recent Friday afternoon, she’s like a celebrity surrounded by her fans. Nurses come out in droves with big hugs and warm smiles to greet the 13-year-old. They all know her. They have all cared for her, some since she was a baby. Emma’s been a familiar face at Boston Children’s since her first seizure, at seven weeks. Since that time, the nurses on 9 Northwest have made her feel special whenever she’s here. Genetic mutation causes difficult seizures Although Emma has gone for long periods of time without seizures, they have become more d...
Source: Thrive, Children's Hospital Boston - November 15, 2016 Category: Pediatrics Authors: Ellen Greenlaw Tags: Our Patients’ Stories epilepsy epilepsy center epilepsy genetics epileptic seizures neurology nursing Source Type: news

Olympian D ’Agostino shares 3 lessons after ACL injury
“The crux of Olympic competition is to do everything you can to be the first one to cross the finish line,” says Abbey D’Agostino. But that’s not what Abbey did during the 5,000-meter qualifying heats in the 2016 summer games. Abbey had trained for her Olympic moment for years, adhering to the rigid 24/7 lifestyle of an elite athlete since graduating from Dartmouth College and signing to run professionally with New Balance. Abbey’s Olympic moment came unexpectedly when she and New Zealand runner Nikki Hamblin collided and tumbled to the ground. What happened at the Olympics is an example we should be talking ...
Source: Thrive, Children's Hospital Boston - November 14, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories ACL injury ACL tear Dr. Mininder Kocher Orthopedic Center Sports Medicine Source Type: news

“We can fix him.”
Our 10-year-old son Sam was always a skinny kid and a picky eater, never enough to cause serious concern. But gradually, things began to darken. Sometimes at family dinners, he would show a pained look, get up from the table and start pacing around. A few times he clutched his chest and began to panic — fear rising in the room — but just as quickly these moments would pass. Perhaps wanting to ignore the signs, my wife and I categorized these episodes as among the many kid behaviors that defy explanation. But once the daily vomiting started, I hauled Sam to our pediatrician. Sam’s accelerating weight loss was substant...
Source: Thrive, Children's Hospital Boston - November 10, 2016 Category: Pediatrics Authors: Brian Birtwistle Tags: Our Patients’ Stories achalasia Aerodigestive Program Dr. Rachel Rosen Dr. Sam Nurko Source Type: news

Epilepsy: Top tips and tricks from our staff
In honor of Epilepsy Awareness Month, some of the nurses and social workers who support the Boston Children’s Hospital Epilepsy Center share their top epilepsy tips. Chris’s tip: Get support! Chris Ryan, LCSW, recommends that you consider therapy for your child or family — or both. Kids with epilepsy are at higher risk for behavioral and mental health conditions, like anxiety, depression and attention-deficit/hyperactivity disorder (ADHD). They may also struggle with the lifestyle restrictions epilepsy can cause. A therapist can help your child learn to cope with these conditions. Chris says joining a support group ...
Source: Thrive, Children's Hospital Boston - November 8, 2016 Category: Pediatrics Authors: Ellen Greenlaw Tags: Caregivers Diseases & Conditions Health & Wellness epilepsy epilepsy awareness month epilepsy center Source Type: news