Author: Maureen McCarthy

Inflammatory bowel disease: 6 tips for a new school year

IBD-Back-to-school
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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The tube, the team and the family that give life

Parenteral-Nutrition-Naema-BostonAs 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color.

During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes severe diarrhea and an inability to absorb nutrients, requires specialized parenteral nutrition (PN) and intravenous hydration support at home.

For the Alshehhi family, however, “home” is over 6,600 miles from Boston.

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Tackling bedwetting: ‘Don’t be afraid to talk about it’

Bedwetting, otherwise known as urinary incontinence or enuresis, is fairly common, often embarrassing and sometimes difficult to talk about. It is estimated that about 20 percent of boys and 17 percent of girls, ages 6 to 7 years old have some problem with daytime or nighttime wetting. Still, many kids are reluctant to talk about wetting with parents, friends and teachers. Parents themselves often have a hard time confronting the issue.

The Voiding Improvement Program (VIP) at Boston Children’s Hospital offers a comprehensive approach to bedwetting tailored to each child’s individual needs. “Our program is driven by highly skilled and compassionate nurses who understand both the physiologic and emotional issues surrounding urinary issues,” says Pamela Kelly, the program’s nurse director. Treatment may include biofeedback training, relaxation therapy such as guided therapy and behavioral therapy.

Kelly and VIP’s director, Dr. Carlos Estrada, offer five tips for managing your child’s wetting issues.

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A ‘superstar’ homecoming: Julia’s journey for bladder exstrophy care

Julia, born with bladder exstrophy, is pictured being held by her mom and dad

Julia Ryan was born on March 2, but her journey to Boston Children’s Hospital began months before her birth.

During Tori Ryan’s pregnancy, doctors near her home in South Carolina diagnosed her unborn child, Julia, with bladder exstrophy, a rare and complex birth defect where the bladder develops inside out and is exposed outside of the body.

“There were a lot of tears,” says Tori’s husband, Sean, of receiving the news about their daughter. “It was hard. We had to balance our own worry with the excitement our two older daughters felt about having a little sister.”

Their concern for their unborn baby led the Ryans to Boston Children’s. 

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