Stories about: Caregivers

Drumroll please: Our ‘Best in Care’ finalists

An older man laughs with patient at Boston Children's Hospital
Best in Care nominee, Lucilo Puello, receives a valentine from Ellie [PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S]

This spring, one staff member or volunteer from Boston Children’s Hospital will be honored with a Patient and Family Best in Care Award. Founded by the Boston Children’s Family Partnerships Program, the Best in Care Award is a way for families to recognize staff members and volunteers who have gone above and beyond in providing exceptional care.

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Answers to parents’ biggest questions about feeding and swallowing concerns

Baby transitions from bottle to solid foods

Most kids have experienced challenges with food at some point, whether that means eschewing veggies or refusing anything but chicken nuggets and pizza. But for children with airway disorders and other conditions that affect chewing or swallowing, mealtime isn’t just frustrating. It can be uncomfortable — and even dangerous.

If your child is experiencing difficulty drinking or eating, or is aspirating, your first step should be to make an appointment for a clinical evaluation, says Kathryn Davidson, a speech-language pathologist in the Feeding and Swallowing Program at Boston Children’s Hospital. Depending on the results, your child’s clinician will likely recommend certain strategies to make mealtime more palatable. Here, Davidson answers some questions for parents of kids with feeding and swallowing challenges.

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What can I do if there is no approved treatment for my child’s rare disease?

Just one tough question of many asked — and answered — during a social media Q+A held in observation of this year’s Rare Disease Day on February 28. Rare disease specialists, patients and advocates from across the country took to Twitter to offer their firsthand advice for dealing with a newly-diagnosed (or undiagnosable) rare disease. 

If your or your child’s rare disease does not yet have a treatment option, you can get involved in natural history research…

Over Twitter, our story headline and other questions were posed by the National Organization for Rare Disorders (NORD) and The Mighty, a digital health community that empowers and connects people who are facing disease or disability. Dr. Phillip Pearl, who directs Epilepsy and Clinical Neurophysiology and studies inherited metabolic epilepsies at Boston Children’s Hospital, offered his recommendations through a series of tweets from the @BostonChildrens Twitter account.

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Inflammatory bowel disease: 6 tips for a new school year

A new school year presents a lot of new opportunities like new teachers, new subjects and the possibility of new friends. But that newness also comes with a good degree of uncertainty, which can be frightening for a student with a chronic illness, such as Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease (IBD). That anxiety can be especially strong if the diagnosis is new, and the upcoming school year will be your child’s first with IBD.

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