Superheros, specialists and sidekicks

service dogSporting a Superman sock on her left foot and Batman on her right, Bella Burton, a 12-year-old from Woburn, Massachusetts, listens intently to her orthopedic surgeon Dr. Lawrence Karlin. Lots of people mix up their socks, he tells her. “You should really stand out from the crowd. Wear unmatched shoes.”

She chuckles and pretends to ponder his advice. Ultimately, Bella decides against Karlin’s fashion tips.

The exchange is typical of Bella and Karlin, says her mother Rachel.

The pair first met in 2007 at the Boston Children’s Hospital Orthopedic Center when Bella was just a toddler. Genetic experts suspected Bella had Morquio syndrome, a rare birth defect whose symptoms include abnormal bone and spine development and possible heart and vision problems.

As Bella underwent genetic testing, Rachel and her husband Ed faced a flutter of uncertainty. “We were so new to Boston Children’s, and Bella’s diagnosis wasn’t confirmed.”

Genetic testing confirmed Bella did have Morquio, which meant she needed a slew of additional specialists — in clinical genetics, pulmonology, cardiology, neurology and more.

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Trusting your instincts: One mom’s story

Serena with Julia and Sebastian

Serena Hadsell has no medical training. But when her 4-year-old daughter Julia got sick a few days after Christmas in 2013, something else kicked in – her mother’s intuition.

“Julia had a stomach bug and was having trouble keeping anything down,” recalls Serena. “It was very late and I was trying to go to sleep, but I got the sense that something was wrong: Her breathing wasn’t quite right.”

A frightening late-night hospital trip

Serena considered waiting out the night at home and calling their pediatrician in the morning, but she couldn’t stop watching Julia. So, despite the late hour, Serena decided to pack up the family, including 6-month-old Sebastian, and head to their local hospital. Once there, it turned out that Serena’s instincts had been right.

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A new option for kids with severe allergies

(image credit: CVS)

For parents of children with severe allergies, keeping our kids safe in the event of an allergic reaction is a priority. We rid our houses of allergens, we write detailed allergy plans for caretakers and we stock up on Epinephrine, the medication that will save our kids if they ever experience anaphylaxis.

Epinephrine auto-injectors are expensive, they expire every year even if unused, and we have to purchase multiples for home, school, and elsewhere. Which is why we’re thrilled that CVS now offers a generic Epinephrine auto-injector for $109.99 per two-pack — that’s about a sixth of the cost of Epi-pen and a third of the cost of Mylan’s generic version.

Before heading out to CVS to stock up, we checked in with Dr. John Lee, clinical director of the Food Allergy Program at Boston Children’s Hospital. “This new Epinephrine auto-injector from CVS can be used safely for anaphylaxis,” assures Dr. Lee. “It provides the same medication and the same dosing as the Epi-pen,” though he warns the mechanisms differ. He urges anyone caring for a child with a life-threatening allergy to be trained on how to use each brand.

Above all, Dr. Lee insists caretakers carry an Epinephrine auto-injector at all times — “no matter which one it is,” he emphasizes.

Learn about Boston Children’s Hospital’s Food Allergy Program.

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From strep throat to RSV: Winter health cheat sheet

Winter-health-safetyParents, we’re with you. We know that kids spread germs like wildfire. We know that even a simple cold can mean some sleepless nights. And we know that being prepared can makes things at least a tad bit easier.

When it comes to common childhood winter illnesses, knowledge is your best defense. So brush up on your winter ailment know-how, and head into the cold season armed with a good strategy.

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