The Importance of Patient Advocacy and Family Care

by Guest Blogger on August 7, 2014

By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis. 

KerrySheeran_1Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.

But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.) Full story »

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Reliving TEDxLongwood

by Tripp Underwood on August 4, 2014

The Longwood medical area (the section of Boston that’s home to Boston Children’s Hospital and many other renowned medical centers) was recently the site of an exciting speaker series called “TEDxLongwood”—an independently organized event that brought people in the Longwood area together to share a TED-like experience.

Two of the day’s presenters had personal ties to Boston Children’s, each with a unique and moving story, which we wanted to share with Thriving readers.


Elaine C. Meyer, PhD, RN, is a staff psychologist at Boston Children’s and director of the hospital’s Institute for Professionalism & Ethical Practice. In the following talk, Meyer recalls personal experiences—both from her times as a doctor and a patient—to remind listeners that sometimes being supportive and emotionally available to a patient and her family is the most important care a person can provide.


Jimmy Zankel is a director of The Big Apple Circus, the circus troupe that trains the men and women who staff Boston Children’s Clown Care Unit. In the following talk, Zankel explains how specialized training, carefully coordinated communication with the medical team and a pair of oversized underwear played a crucial role in one child’s treatment.

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Mosquito Pool Tests Positive for West Nile Virus in Boston

by Maureen McCarthy on August 2, 2014

tiger mosquitoBoston Public Health Commission confirmed the presence of West Nile Virus (WNV) in a mosquito pool in Jamaica Plain. No human cases of mosquito-borne illness have been reported in Boston to date.

According to Dr. Anita Barry, director of the Infectious Disease Bureau at the Public Health Commission, time of year and weather are contributing factors to the presence of WNV in Boston.

“Periods of hot weather and heavy rain can contribute to the appearance of West Nile, and people should take some simple precautions to avoid mosquito bites,” Barry said in a statement.

WNV is most commonly transmitted to humans by the bite of a mosquito infected with the virus, but it poses very low risk to most people.

Jeffrey Dvorin, MD, PhD, of Boston Children’s Hospital’s Division of Infectious Diseases, says the risk of exposure can be greatly reduced by following these simple safety measures:

Use insect repellents

  • Bug sprays with DEET or picaridin provide the longest lasting protection.
  • If you use sunscreen and insect repellent, put sunscreen on first and the repellent last.
  • Spray repellent on your clothing, not just exposed skin.
  • Always follow the label instructions when using insect repellent or sunscreen.

Know your environment

  • Don’t let children play around water that has been standing for a few days, like puddles or small pockets of rainwater, as they may be a mosquito breeding ground. If you have a kiddie pool in your yard, drain it daily to keep the water from becoming stagnant.
  • Leave doors shut and make sure all your windows have screens without holes. Replace or repair screens if necessary.
  • Wear long sleeves and pants when weather allows, especially when in areas with large mosquito populations like swamps or woods.

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What is Ebola?

by Tripp Underwood on July 31, 2014

The current Ebola outbreak in West Africa is the world’s deadliest to date. An international team of health care workers is currently in the area trying to control the spread of the disease and stop the outbreak.

What is Ebola?

House1Ebola is an illness caused by a virus. The symptoms of Ebola start with fever, intense weakness, muscle pain and a sore throat that then progress to vomiting, diarrhea and kidney damage followed by internal and external bleeding. This disease is highly fatal with 60–90 percent (depending on the outbreak) dying from the disease.

How does Ebola spread?

The disease initially infects people through close contact with infected animals like chimpanzees, gorillas, fruit bats and forest antelope. Once it moves to the human body is can spread from human to human through direct contact with infected blood and bodily fluids, or through indirect contact where the virus lives on surfaces or objects. Almost all bodily fluids are contagious for Ebola including blood, vomiting, feces, urine, sweat, saliva, breast milk and tears.


Is there an Ebola vaccine and treatment?

If a person becomes very sick with Ebola, she will require intense supportive care. Patients are often dehydrated and need rehydration with special solutions with electrolytes or intravenous fluids, or blood transfusions. Outside of rehydration and supportive care, there are no other treatments currently available.

Currently, there is no licensed vaccine for Ebola. Many are being researched and tested, but none of these will be available during this outbreak.

What happens next?

Liberia has now closed most of its border crossings, and communities hit by an Ebola outbreak face quarantine to try to stop the virus’s spread. All passengers on flights leaving Liberia are being screened for symptoms or exposure, and airports in Europe are implementing monitoring procedures. Public awareness campaigns around Ebola and the steps people can take to stop its spread have also increased in the area.

The World Health Organization (WHO), in partnership with the Ministries of Health in Guinea, Sierra Leone and Liberia, is working hard to contain the virus. In addition, America’s Centers for Disease Prevention and Control is working there aiding with testing, disease surveillance and training of workers.

“The important thing for people here in the U.S. to do is be aware of this large scale health crisis affecting patients and health care workers in Liberia, Sierra Leone and Guinea,” says Michelle Niescierenko, MD, Director of Boston Children’s Hospital’s Global Health Program. “Supporting the WHO or the very few organizations that have expertise in responding to Ebola is the most effective way to help.”

Public places in the U.S. are at extremely minimal risk unless you are among returning travelers from the region. If you are traveling by plane, domestically or internationally, wash your hands frequently and follow all screening procedures at the airports. If you are traveling to West Africa, be sure to check the most recent updates close to your departure.

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A bumpy start ends on a high note for newborn August Koch

by Maureen McCarthy on July 30, 2014

IMG_5742 (1)Bringing your newborn baby home from the hospital is a happy and momentous occasion. Tiny booties, frequent feedings and diaper changes, sleep adjustments and more are highlighted with warm snuggles, gentle kisses and family bonding time.

But for the Sundquist-Koch family, the happiness associated with those first few days as a new family took a sharp and unexpected turn soon after their son August Koch arrived home from the hospital.

At the tender age of 2 weeks old, August spiked a fever and needed to be seen at Beverly Hospital’s pediatric emergency department. Fortunately for August (and his very nervous parents Kate and Simon), Boston Children’s pediatric-trained physicians were on staff to make sure he received the care he needed. Full story »

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Four steps to help kids avoid heat stroke in cars

by Tripp Underwood on July 30, 2014

Car-seat_emptyA total of eighteen children have died this year from heat stroke after being left alone in a car.

Unfortunately, this is not an alarming new trend. Since 1998, at least 600 children across the United States have died when they were left unattended in a vehicle. A majority of these children were left accidently in the backseat by a distracted parent or caregiver, only to discover the child hours later, after it was too late. Other times the child found her way into a parked car and couldn’t get out on her own. As many as 18 percent of these deaths occurred after a parent knowingly left a child in a car.

But this isn’t an issue only in the Deep South, Arizona desert or other extreme heat areas— heat stroke deaths have been recorded in almost all 50 states throughout the entire year. Vehicles heat up quickly—as much as 19 degrees in 10 minutes—so a car can go from uncomfortable to dangerous in minutes, especially for young children whose body heat can spike up to 5 times faster than adults. Once their internal temperature hits 104 degrees, the major organs begin to shut down; when it reaches 107 degrees, the child could die. Reports show children have died in cars on days where the temperature was in the 70s.

Every one of these deaths is as tragic as it was preventable. To make sure it never happens to your child:

  • Always lock car doors when parking to prevent a child from climbing in on her own.
  • Never leave a child unattended in a car, even if you only plan on being gone for a few minutes. Not only is it dangerous, it’s actually illegal in some states, as this mother found out and reported on in a griping article.
  • Get in the habit of placing an important item, like a cell phone, briefcase, wallet or purse, next to the child when buckling her in to her car seat. Soon you’ll start instinctively reaching in the back seat and putting the car seat in your direct line of sight before leaving the car, which can eliminate accidental leavings.
  • Let babysitters, grandparents and other adults who may watch your child know that it is never OK to leave the child alone in a car.

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Help! What do I do if my toddler refuses to sleep?

by Guest Blogger on July 29, 2014

The mother of a 3-year-old who has trouble falling asleep at night wrote our sleep expert Dennis Rosen, MD, the following email asking for help. The answer seems fairly universal, so we want to share it with Thriving readers who may be having the same difficulties.

Dear Dr. Rosen,

Not-tiredI am hoping that you can help me.  I don’t know of a pediatrician in my area that specializes in child sleep issues.  I have a three-and-a-half-year-old, and for the past six months, getting her to go to sleep at night has been a nightmare. I’ve always had trouble getting her to sleep—she didn’t sleep through the night until she was almost two.  And even up to two-and-a-half she would wake up in the night and tell me she was bored and wanted to get up and play.

When she turned three I moved my daughter into a regular bed but she won’t stay there long enough to fall asleep. (She gets up and plays, or wanders around upstairs if she can do so without me hearing her downstairs).

I’ve tried the Super Nanny approach and kept putting her back to bed until she fell asleep. But a week of doing this for what felt like 50 or 60 times a night was too much, especially for a single mom who needs to get up at 5:30 a.m. to go to work.

I started taking everything out of her room that she may play with, taking away privileges, (I even threatened making a call to Santa to talk about her placement on the naughty list), but nothing worked. Finally, I started locking the door to her room.  At first she kicked the door and yelled but now she stays in her room and plays/talks to herself until around 9:30 or 10:30 at night. I usually have to unlock the door several times so she can go to the bathroom, (sometimes she doesn’t really have to go, she just wants my attention).

Once she is asleep she generally stays asleep.  She normally gets up between 5:30 and 6:30 a.m. in the morning.  On a rare day she will sleep until 7:00, and sometimes she up as early as 5:00 a.m.

I thought perhaps her afternoon naps were the problem, but when she doesn’t nap during the day she still goes to sleep around the same time, and still gives me a hard time about it. (She’s also pretty grumpy in the evening when she doesn’t nap.)

I now try to limit her nap to 1 or 1.5 hours in the afternoon, unless she is not well.  At night we start getting ready for bed around 7:00 p.m. (pajamas, bathroom routine, stories, and soft songs) and I try to get her into bed no later than 8:00 p.m. I tell her she can talk to her babies softly in her bed, but she isn’t allowed to get up unless she needs to go to the bathroom. It doesn’t seem to be helping.

Do you have any advice?  I would really like to get her into a better bedtime routine and any help or pointers would be appreciated.


Single Mom Desperately in Need of Sleep

 Dear Mom Desperately in Need of Sleep,

It certainly sounds like you have your hands full! While it’s not possible to provide child-specific advice, there may be some general things you can try that may help both you and your daughter to sleep better.

RosenDennis-1-PreviewlargeTo start, it sounds like her schedule isn’t as regular as it could be, if even during the week her wake-up time ranges between 5 and 7 a.m. Keeping to a regular schedule, both weekdays and weekends, helps to synchronize the body’s internal (circadian) clock, making it easier to fall asleep at the same time each evening. With her wake-up time spanning a two-hour range, it is easy to see how some nights she might be ready to settle down and go to sleep at 8:30 p.m., while on other nights that only happens at 10:30 p.m.

You also mention that she naps 1.5 hours during the day. Kids that age generally need around 11 hours of sleep, so that leaves 9.5 hours left for her to get at night. (Of course, there are others who need less than that; every child is different.)

The first thing I would suggest doing would be to put her on a regular wake-up time and keep to it, seven days a week. If you chose 6 a.m., that would mean putting her down at 8:30 p.m. You’d want to make sure, too, that she isn’t getting more sleep at daycare than you are being told. While easier for the daycare staff, this can create lots of problems for parents whose kids simply aren’t sleepy enough at bedtime because they’ve slept during the day.

As for her behavior, I’m not a big fan of locked doors, which can create stress for both child and parent.  A gate at the door should do the trick just as nicely. Providing a dim reading light and books that she can look at if she’s not sleepy, as well as dolls or toys, will help to keep her from getting bored. While she may ask to come out, you need to decide if that is acceptable, and to be consistent. One possibility might be to give her a “pass” that she can use once to come out for a drink of water, or a kiss, etc.

Good luck!

Dennis Rosen, MD, is the associate medical director of The Center for Pediatric Sleep Disorders at Boston Children’s Hospital and author of Successful Sleep Strategies for Kids. If you have a sleep-related question to ask, please email it to

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Preschoolers are drawn to play. Summertime sprinkler fun, snow-bound sledding and endless forms of indoor, outdoor horseplay are part of a youngster’s childhood fabric.

But for Matthew Dolan, carefree play was absent from much of his early years.

As a toddler and young boy, Matthew didn’t feel well and was much smaller than his active peers. He often experienced great pain—to the point of tears—when lying down, had numerous urinary tract infections (UTIs), ear infections and bouts of strep throat.

“I was sick all the time and stayed home from school frequently,” says Matthew, now 19. “I was tiny and not as active as other kids my age. They were larger, faster and more skilled at games we played.”

Matthew’s mother, Martha, knew her son was fighting a much larger medical issue. But Matthew’s pediatrician could not pinpoint the source of the problem.

“I felt very helpless since I knew something was wrong but didn’t know what was causing his pain,” says Martha.

At 6 years old, Matthew’s medical journey took a life-saving turn. He was referred to Boston Children’s Urology Department. Full story »

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