Back in Kosovo after life-saving surgery, Lis ’s heart remains in Boston
Like many kids, Lis Spahiu loves wearing his Boston Celtics and New England Patriots t-shirts. His mom, Zana, jokes that sometimes she needs to hide them so he’ll wear something else. But Lis isn’t a typical Boston sports fan. This 5-year-old from Kosovo has grown to love Boston, and its sports teams, after several trips to the Boston Children’s Hospital to receive life-saving care for his heart.
“In Kosovo, the health care system is very poor,” explains Lis’s mom Zana. “So when Lis contracted Kawasaki disease at 5 months old, he was misdiagnosed.”
Kawasaki disease causes inflammation of the blood vess...
Source: Thrive, Children's Hospital Boston - October 6, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories Coronary Artery Program Dr. Jane Newburger Dr. Luis Quinonez Kawasaki disease Kawasaki Disease Program Source Type: news
The space between heartache and happiness: Two sons with adrenoleukodystrophy
The Rojas family at a recent visit to Boston Children’s.
When Paul and Liliana Rojas talk about their life, they describe it in one of two ways — the way it was before their sons, 10-year-old Brandon and 7-year-old Brian, were diagnosed with ALD, and the way it is after. Their story is one of heartbreak — but also hope, in the form of a new clinical trial.
Learn more about the results of the clinical trial, recently published in the New England Journal of Medicine, that halted the progression of Brian’s ALD.
ALD is short for adrenoleukodystrophy, a debilitating brain disease that simply goes by its initials.
“Li...
Source: Thrive, Children's Hospital Boston - October 4, 2017 Category: Pediatrics Authors: Emily Williams Tags: Diseases & Conditions Our Patients’ Stories Research and Innovation adrenoleukodystrophy ALD clinical trial Dana-Farber/Boston Children's Cancer and Blood Disorders Center David Williams MD gene therapy Lorenzo's Oil New England Jour Source Type: news
Hip pain in young athletes: Q & A with a sports medicine specialist
When your child plays a sport, it’s often hard to tell where everyday aches and pains end and a potentially serious injury begins. Bumps and bruises are anything but rare in contact sports, and muscle soreness can be a common complaint for any young athlete — especially given the rigor of youth athletics these days. So how do you know when your child’s hip pain is due to an actual injury?
Dr. Mininder Kocher, orthopedic surgeon and Associate Director of the Sports Medicine Division at Boston Children’s Hospital, helps answer parents’ questions about hip pain in young athletes.
What are some of the more common h...
Source: Thrive, Children's Hospital Boston - October 3, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Ask the Expert Child and Young Adult Hip Preservation Program Division of Sports Medicine Dr. Mininder Kocher FAI femoracetabular impingement hip dysplasia hip impingement labral tear Source Type: news
Michelle is moving ahead after experiencing a stroke
In fall of 2014, I was a senior, excited about finishing high school in New Hampshire and heading off to college. But I could never have guessed what the year would bring. I was an avid lacrosse player and competing in my fifth game of a tournament when I started to notice I was having trouble seeing out of my left eye. Soon, my hand felt weird and I couldn’t grip the stick properly. As I sat on the sidelines, onlookers recommended I be taken to a local hospital.
Recovering from stroke
I can’t remember a lot of what happened next, but I know that the emergency doctors believed I had a stroke. They sent me to the Stroke...
Source: Thrive, Children's Hospital Boston - October 2, 2017 Category: Pediatrics Authors: Michelle Ostaudelafont Tags: Diseases & Conditions Our Patients’ Stories Dr. Cameron Trenor Dr. Laura Lehman pediatric stroke Stroke and Cerebrovascular Center Source Type: news
Finally finding answers for cavernous malformation
It was early morning and Tiffany and Joe Palowski were worried. Their son, Michael, was undergoing a magnetic resonance imaging (MRI) scan to determine the cause of his excruciating headache. The test — only expected to take about 45 minutes — now approached the two-hour mark. “They had to have found something,” Tiffany said as her panic rose. “I know they did.”
About 10 days earlier, Michael had gotten sick, vomiting so intensely that he began throwing up blood. The 6-year-old had spent a week in a local hospital with a suspected case of norovirus before being sent home. But then he’d developed a headache th...
Source: Thrive, Children's Hospital Boston - September 29, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories cavernous malformations Cerebrovascular Surgery and Interventions Center Dr. Edward Smith Second opinion Source Type: news
Please don ’t judge: Supporting a friend whose child has a mental health condition
Shannon Larson and her family (photo courtesy of Jennifer Shore Photography)
When my children were younger, I was always able to help them maneuver the difficulties of growing up. If it was their fear of going to school, attending playdates or being hesitant of trying a new activity, I was there to cheer them on, nudge when needed and assure them that everything would be okay.
But as both of my children entered their teenage years, their anxiety and fears became more pronounced and debilitating, manifesting in panic attacks and depression. As a parent, I understood that my children would need more than just my reassuring w...
Source: Thrive, Children's Hospital Boston - September 28, 2017 Category: Pediatrics Authors: Shannon Larson Tags: Mental Health Parenting Department of Psychiatry Source Type: news
Experience Journal: Jake is charting new waters with HLHS
Jake Pickles was born with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect that causes parts of the left heart to be underdeveloped. As an infant and toddler, Jake had three open-heart surgeries to repair his heart.
Now 22, Jake is one of the oldest patients to survive with HLHS. This makes his prognosis uncertain. At some point in the future, he may need a heart transplant or more procedures. But Jake and his close-knit family try not to dwell on this uncertainty. Instead, they live with gratitude and hope.
“I’m just planning as if there’s nothing wrong,” says Jake. “And I’m going to ...
Source: Thrive, Children's Hospital Boston - September 27, 2017 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories congenital heart defect Heart Center hypoplastic left heart syndrome Source Type: news
Jacob ’s story: What it’s like to have a stroke as a kid
My name is Jacob and I’m 8 years old. Two years ago, I had a stroke. At first, I didn’t realize what that meant, and I didn’t understand why I couldn’t move the way I used to.
With time, I’ve been able to get most of my function back, but my right arm has something called dystonia. That means the muscles cramp up and sometimes my arm moves on its own or gets stiff. I can’t control it, and that makes life hard sometimes.
I come to Boston Children’s Hospital every few months to see Dr. Michael Rivkin at the Stroke and Cerebrovascular Center there. Nobody likes having to go to the doctor, but Dr. Rivkin is more...
Source: Thrive, Children's Hospital Boston - September 26, 2017 Category: Pediatrics Authors: Jacob Downing Tags: Diseases & Conditions Our Patients’ Stories Dr. Michael Rivkin stroke Stroke and Cerebrovascular Center Source Type: news
Getting her life back: Amelia overcomes chronic pain
The pain seemed to come from nowhere. Although fifth-grader Amelia Watt had sprained her ankle playing soccer a few weeks earlier, the injury had seemed inconsequential. Yet now, she couldn’t put any weight on her foot without crying. Soon, the burning pain crept up her leg and her foot began to turn purple. Even taking a shower had become excruciating. At age 11, this vibrant, active girl was relegated to crutches, afraid to walk.
Eventually, Amelia’s local physicians diagnosed her with complex regional pain syndrome (CRPS), a chronic pain condition believed to be caused by malfunction of the nervous system. CRPS tend...
Source: Thrive, Children's Hospital Boston - September 25, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories chronic pain Chronic Pain Clinic complex regional pain syndrome Dr. Edin Randall Pediatric Pain Rehabilitation Center (PPRC) Source Type: news
New concussion guidelines: Q & A with a sports medicine physician
For the last few years, concussions have been on the forefront of the minds of parents, coaches and athletes across the country, as their risks and prevalence become more well-known. This increase in visibility has raised a lot of concern about both the immediate and potential long-term effects of concussions sustained by children and adolescents. Luckily, research efforts have also increased, leading to a better understanding of how concussions should be managed in young athletes.
At the 5th International Conference on Concussion in Sport held in Berlin, Germany, physicians and researchers around the world came together t...
Source: Thrive, Children's Hospital Boston - September 22, 2017 Category: Pediatrics Authors: Connor Ertz Tags: Ask the Expert Kids' Safety Division of Sports Medicine Dr. William Meehan sports concussion Sports Concussion Clinic Source Type: news
Listening to Tanner: Finding help for a functional gastrointestinal disorder
For most families, movie night is simply an opportunity to enjoy each other’s company while soaking up some mindless entertainment. But for Tanner Chung and his family, a trip to the theater was life changing. As they watched the tale of a young girl with a mysterious illness play out on the big screen, they were struck by the similarities to Tanner’s own story.
The film was the 2016 drama Miracles From Heaven, which is based on the true experiences of a girl who was treated by Dr. Samuel Nurko at Boston Children’s Hospital for a motility disorder.
“We had been hoping for some guidance, some help, for Tanner,” ex...
Source: Thrive, Children's Hospital Boston - September 21, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories Dr. Samuel Nurko Dr. Travis Matheney functional gastrointestinal disorder Miracles from Heaven Motility and Functional Gastrointestinal Disorders Center Source Type: news
How to manage family life when your child has cancer
Valerie, with husband Doron, son Evan and daughter Ruby
When our daughter, Ruby, was diagnosed with acute lymphoblastic leukemia (ALL) at one and a half years old, my husband and I were immediately transformed from working parents with two young children, to parental caregivers for a child with cancer. Between hospital stays, medications and appointments, there was so much to keep track of. It can be overwhelming at times, but there are ways to manage life after your child is diagnosed with cancer.
Settle into to this new normal. It can be easy to stay in crisis mode when something like a cancer diagnosis interrupts your ...
Source: Thrive, Children's Hospital Boston - September 20, 2017 Category: Pediatrics Authors: Valerie Graf Tags: Diseases & Conditions Parenting Cancer Dana-Farber/Boston Children's Cancer and Blood Disorders Center Source Type: news
A guide to childhood brain tumors
There are many different types and classifications of pediatric brain tumors, based upon cell structure, composition, rate of growth and location. A child’s tumor may have the same microscopic appearance to an adult tumor, but the mutations that cause its growth are completely different. Learn about the six most common types of childhood brain tumors.
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Source: Thrive, Children's Hospital Boston - September 19, 2017 Category: Pediatrics Authors: Jenny Fernandez Tags: brain tumors Dana-Farber/Boston Children's Cancer and Blood Disorders Center Source Type: news
When transplant isn ’t the only option
Nine-year-old Ariana Dufane is happiest when she’s tumbling, whether she’s launching herself off the ground for a cartwheel or practicing how to perform the perfect split. In that moment, the fourth-grader focuses on nothing but strength and balance, a skill she has refined, not just in gymnastics but in life.
Born with intestinal pseudo-obstruction — a disorder of abnormal intestinal motility function that may cause the body to go into intestinal failure — Ariana’s first few months were spent in and out of emergency rooms. Her symptoms began with a distended belly and an inability to have a bowel movement.
“I...
Source: Thrive, Children's Hospital Boston - September 18, 2017 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories Boston Children's Motility and Functional Gastrointestinal Disorders Center Colorectal and Pelvic Malformation Center Intestinal and Multivisceral Transplant Program intestinal transplant Leonel Rodriguez pseudo-obstruc Source Type: news
Brain surgery for a cavernous malformation gets Timmy back to being a kid
Eight-year-old Timmy LaCorcia was having a bad day. He didn’t feel well and had to leave school early. It was frustrating — he usually had perfect attendance — but not alarming. After all, it was March, a time when children often struggle with colds and other illnesses. “We just thought he had a stomach bug,” says his mother, Gina.
But a week later, he still felt sick. This time, his head hurt. At home, Gina got him settled on the sofa and gently pulled a blanket over him as he dozed. Several minutes later, she checked back in on him and noticed that his foot was twitching. Turning him over, she saw that his eyes...
Source: Thrive, Children's Hospital Boston - September 15, 2017 Category: Pediatrics Authors: Jessica Cerretani Tags: Diseases & Conditions Our Patients’ Stories cavernous malformations Cerebrovascular Surgery and Interventions Center Dr. Edward Smith Source Type: news
