Since 2005, Boston Children’s Hospital’s Community Asthma Initiative (CAI) has worked with over 1,000 families to help them better manage their child’s asthma. The goal is threefold: to increase a child’s quality of life; reduce Emergency Department (ED) visits and hospitalizations; and save money on asthma-related health care spending, which adds up to over $3.2 billion a year nationwide. Full story »
By Melinda Lancaster
On October 11, families and researchers will join together at the steps of Gordon Hall, on the campus of Harvard Medical School, to bring awareness to the struggle of our children with Rett syndrome. As our Blue Sky Girls (and one boy) begin their symbolic climb up the stairs, we are reminded of the effort researchers, parents, caregivers and especially the children themselves make on a daily basis to go onward and upward toward a goal once thought unreachable.
Rett syndrome is a devastating neurological disorder that affects approximately 1 in 10,000 girls and a smaller number of boys. Characterized by a loss of skills—including hand use, the ability to speak and in many cases the ability to walk—it can lead to seizures, breathing abnormalities, curvature of the spine and cardiac issues. The first Blue Sky Girls was organized in 2011; our group in Boston has a boy, so we call it Blue Sky Day.
When I joined the first Blue Sky Day, I was leery. Would my Katelin, my daughter, make it up those stairs? There were so many. She did, screaming all the way to the top. And I think that shows how scary this journey into the unknown can be. And yet, in the words of preacher Vince Havner, “The vision must be followed by the venture. It is not enough to stare up the steps—we must step up the stairs.” I’m thankful for those parents and researchers who, years ago, understood as Martin Luther King, Jr. did that “Faith is taking the first step, even when you don’t see the whole staircase” and started working for a better life for our children.
Here, in Boston, our families are joined by cheerleaders and firefighters who make sure that, however it can be done, our children make it to the top. We are also given the opportunity to meet the researchers who remain stalwart in their resolve to find treatments and a cure. Dr. Michela Fagiolini at Boston Children’s Hospital is one researcher who will speak at this event, bringing encouragement and optimism that progress is being made. In addition, we are lucky to have Boston Children’s Rett syndrome clinic and an innovative clinical trial led by its director, Dr. Walter Kaufmann. These researchers too are making sure our children reach the top.
But most of all, Blue Sky Day is, to me, a celebration, an overcoming of adversity and the knowledge that Katelin and I are not alone on this journey known as Rett syndrome. When I think of the researchers, doctors, parents, caregivers and especially the brave children who face huge staircases every day, I am reminded of a quote by President Lincoln:
“I have an irrepressible desire to live till I can be assured that the world is a little better for my having lived in it.”
The world is a better place because of all of them—especially the children who teach us, without words, what courage is all about.
To learn more about the Rett Syndrome Program at Boston Children’s Hospital, please visit this website.
Honoring Craniofacial Acceptance Month and one young man’s quest to give back
By Torrence Chrisman
Torrence Chrisman, 24, is a history major at the University of Massachusetts Boston. At birth, Torrence was diagnosed with Apert syndrome, a rare genetic birth disorder involving abnormal growth of the skull and the face, fingers and toes. Read about his medical journey as a Boston Children’s patient and his quest to return to the hospital.
I came to Boston after being born in Chicago, where I was diagnosed with the amazing Apert syndrome. It was because of the doctors and surgeons at Boston Children’s Hospital that I ended up in Massachusetts. One surgeon, Dr. Joe Upton, specialized in operating on the hands of Apert patients. He swung a home run every time he entered the operating room and worked miracles with microsurgery. Dr. John Mulliken, who specialized in the craniofacial aspects of my surgeries, always had a can-do attitude and completed the surgeries with confidence.
Throughout my 22 surgeries, both doctors proved to be a godsend because they were able to minimize roadblocks that could obstruct my life. If I hadn’t come to Boston Children’s Hospital, I don’t know where or what state I would be in. What I do know is that I am forever grateful for the doctors, nurses and staff of Boston Children’s Hospital.
Over the course of my journey through the hospital, the medical experiences were at times downright nerve-racking, because having a surgery is far from simple. But the people within the hospital walls all performed with expertise and precision. The doctors and nurses were a saving grace while I recovered at the hospital. No matter if it was two in the afternoon or two in the morning, the nurses stood by their posts ready to jump whenever I needed them.
From hospital gown to business casual
As the years went by and the days of being an inpatient fell further behind me, I felt like I had some unfinished business. Because the level of care I received was so high, I wanted to go back and work with those same doctors.
It was their dedication, passion and commitment that inspired me to turn in my patient ID bracelets for an employee ID badge and swap out the hospital gown for business casual attire. I joined the ranks of the Plastic and Oral Surgery Department as an intern. Not once but twice.
Being fully integrated into the administrative environment, I could see firsthand what went on behind the scenes. I was able to contribute to the department and give back to the hospital. It meant a lot to me to be fully included in a real-world scenario where I am not judged by how I look, only by who I am.
Growing up with a physical uniqueness, I had added challenges than most people. Things were tough through high school. It wasn’t until I graduated from high school that I was finally able to spread my wings to their full extent. With the surgeries behind me, I went off to college, received an associate’s degree and ventured out into the world on my own. I now have my own apartment and am attending the University of Massachusetts Boston.
To this day, I am forever grateful to have received such extraordinary care and am honored to have worked at Boston Children’s with such an amazing group of people.
Meaghan O’Keeffe, RN, BSN, is a mother, writer and nurse. She worked at Boston Children’s Hospital for nearly a decade, in both the Cardiac Intensive Care Unit and the Pre-op Clinic. She is a regular contributor to Thriving.
No parent likes it. Most siblings can’t take even the slightest thought of it. And often, the last person to get sick is the poor caretaker.
But there’s some hope. With these nurse-approved throw-up tips, you might get through this unscathed. Even if you don’t, it can be less disastrous than you might have initially imagined. Full story »
But please, don’t panic.
This virus has certainly caused trouble. Enteroviruses are incredibly common, causing 10-15 million illnesses a year—but usually, those illnesses are minor. This one, for reasons we don’t fully understand, is stronger, and is worse for kids than for adults.
I can hear you saying: so why shouldn’t I panic? Here’s why.
Enterovirus D68 is just a monster of a bad cold. Yes, it can make kids sick, and some kids very sick. But it’s nothing we can’t handle. Most cases can be managed at home, with lots of fluids and TLC. And should kids get sicker and need to come to the hospital, we know what to do. We have medications that help them feel better, as well as fluids and oxygen if they need it (and we help parents with the TLC, too). Kids who get this virus get better; we’ve just had our first confirmed case here at Boston Children’s (it takes a while for the testing results, as specimens have to be sent to a special laboratory) and that child is home and fine.
Instead of panicking, here’s what you absolutely should do to prevent getting sick (from this and other illnesses, including flu):
- Make sure everyone in the family washes their hands often. Using plain old soap and water and washing for 20 seconds (about the time it takes you to sing “Happy Birthday”) is perfect. Carry hand sanitizer for those times when you are away from a sink.
- Teach children to cover coughs and sneezes with the inside of the elbow, not the hand
- Don’t share cups or utensils, and wipe down shared objects and surfaces (toys, doorknobs, countertops) regularly.
- To the extent that you can, stay away from sick people.
- Get your flu shot! It won’t fight off enterovirus, but it will fight off the flu.
Because this virus seems to be particularly tough for children with asthma, it’s really important that children with asthma take all of their medication as prescribed—especially their “controller” or preventative medication. Sometimes when kids are well families slack off a bit on those meds, wondering if they are really necessary; please, give them regularly now. If you aren’t sure what to do, or if you need refills, call your doctor.
Speaking of which…it’s really important that you be watchful of your child if they have cold symptoms, (whether or not they have asthma) and call the doctor (or go to an emergency room) if your child:
- Has a worsening cough that isn’t responding to home remedies or medications
- Has any trouble breathing (rapid or heavy breaths, sucking in around the ribs, having trouble talking, looking pale)
- Won’t drink, is urinating much less than usual, or seems much sleepier than usual
- Has a fever of 102 or higher (for babies, or if your child has a health problem that makes them more prone to infection, your doctor may want you to call for a lower fever—check with the office for instructions)
- Worries you in any other way—it’s always better to give a call if you are worried.
Remember: it’s just a monster of a cold. Chances are it won’t happen to you—but if it does, you and your family will get through it. And we’re here to help.
To better prepare families, Boston Children’s Hospital has created an educational sheet that outlines what EV-D68 is and what families should do to avoid exposure. The information can be found here on our website.
Michael Rich, MD, MPH, is Boston Children’s Hospital’s media expert and director of Boston Children’s Center on Media and Child Health. (Visit their newly redesigned website here.) Send him a media-related parenting question via firstname.lastname@example.org and follow him on Twitter @CMCH_Boston.
Q: I am 14 years old, and currently debating my choice of friends. They all play first-person shooter (FPS) games, while I choose other kinds of games. They often tell me how great their games are but criticize mine. When they clamor for the new Call of Duty, I freak out over the new Sonic games. I am firmly against playing rated M (mature) or AO (Adults Only) games and so are my parents. Are my parents and I the odd ones out on this? Aren’t there negative effects associated with playing FPS games? And if so, what can I do? Full story »
As you begin to prepare for the new school year, consider how much weight will rest on your child’s shoulders. Millions of students in the United States carry backpacks overloaded with textbooks, sports equipment and more, to and from school. But the weight of the backpack and how it is worn could lead to back problems. If a backpack weighs more than 15 percent of a child’s body weight, it could induce back pain. Backpacks should weigh much less; additionally, they should be worn on both shoulders for equal weight distribution with the height falling two inches below the shoulder blades and sitting at waist level. Full story »
Alexandra Schoening is a senior at Boston College and plans to pursue a career in Nursing. This summer, she got a sneak peak at her future profession when she interned at Boston Children’s Hospital’s Neonatal Intensive Care Unit (NICU). Here, she shares five lessons she took away from the experience.
“Lub-dub” goes my heart.
We wake up each morning greeted by the day’s “to-do” list. Some days, the hours take their sweet time passing. Other days they fly by and, before you know it, it’s already tomorrow and you’re doing it all over again.
But if you stop to think about it, isn’t it amazing? That each day we wake up and live?
You may be thinking I’m crazy right about now, but if my internship in the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital has taught me anything this summer, it is that we should be in constant awe of our ability to live.