Inflammatory bowel disease: 6 tips for a new school year

IBD-Back-to-school-tipsA 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.

“The first day of school after an IBD diagnosis can be hard, but with some planning it’s quite manageable,” says Dr. Michael Docktor, of the Boston Children’s Inflammatory Bowel Disease Center. “Most children with the condition are able to quickly return to their normal school routines. All it takes is a few extra steps to make the return as seamless as possible.”

Watch Dr. Michael Docktor’s caregiver video

To ensure school is a positive experience for your child with newly diagnosed IBD, Docktor suggests speaking with your child’s teachers, school administrator and nurse as soon as possible to discuss any concerns or questions you may have. Here are some tips to help prepare for a busy school year.

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After Moyamoya surgery, a back-to-normal birthday for Carolyn

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Before Moyamoya surgery

Carolyn Milks turns 8 on August 21. It’s a big celebration. Carolyn and her family aren’t just celebrating her birthday — they’re celebrating Carolyn’s return to normal. For most of the summer, things like swimming, riding her bicycle and horsing around with her sisters and cousins had been out of the question for Carolyn.

But on August 11, Dr. Ed Smith, co-director of the Boston Children’s Hospital Cerebrovascular Surgery and Interventions Center, gave Carolyn the green light. She could go back to being a kid.

“This is what kids really want. They just want to be normal and do their normal activities,” says Carolyn’s mother Kristen.

It had been a topsy-turvy spring for the Milks family.

My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’

Carolyn, normally a bright, active second grader, started having puzzling symptoms in March.

“She was having a hard time concentrating on her homework and was crying, and my husband and I couldn’t figure out why,” recalls Kristen.

Over the next few days Kristen, an occupational therapist, began observing strange movements in her daughter’s left arm and hand. Carolyn appeared to struggle with everyday activities like holding a pencil, tying her shoes, and she even tried to switch her hand dominance. Kristen set up her phone to video Carolyn.

At the end of the week, while Carolyn, her twin sister Laura and their big sister Emma, were playing at a trampoline park, Kristen watched the videos.

“I was becoming alarmed at what I saw with the functioning in her left arm and hand. Later that day, I watched Carolyn almost fall doing a back bend. Her left arm didn’t hold her weight. And then when I watched her walk, she almost fell a couple of times; she didn’t have full control of her left leg. My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’”

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One mom’s insights: Navigating care for children with behavior differences

autismDiba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. She sees plastic surgeon Dr. John Mulliken for her craniofacial condition, known as Crouzon syndrome.

But he’s just one of her many doctors.

Diba is followed by Dr. Linda Dagi (Ophthalmology), Dr. Bonnie Padwa (Oral and Maxillofacial Surgery), Dr. Mark Proctor (Neurosurgery), Dr. David Coulter (Neurology), Dr. Laurie Ohlms (Otolaryngology) Dr. John Emans (Orthopedic Surgery), Dr. Carolyn Bridgemohan (Developmental Medicine), Dr. Dascha Weir (Gastroenterology and Nutrition) and Dr. Roger Breitbart (Cardiology).

“We touch on all the departments,” says Monir, Diba’s mother.

Diba has had a shunt placed in her brain to relieve pressure inside her skull. She’s also had eye muscle surgery for strabismus, dental surgery to remove her premolars and a tonsillectomy/adenoidectomy. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).

Though she’s never gotten really sick, Diba is a complex patient. She also meets criteria for autism spectrum disorder, so procedures most kids will put up with make her very anxious.

Blood pressure measurement? “She hated that.”

Sleep study? She didn’t sleep a wink all night, unable to tolerate the leads attached to her face.

Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)

Even measuring Diba’s head circumference can be a challenge.

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Heroes, hospitals and helicopters: Cardiac care at 20,000 feet

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Everyone knows physicians save lives in hospitals. That’s where they do most of their work. But the story of my daughter’s medical emergency is a little different. How she survived a medical flight from Iowa City, Iowa, to Boston is straight out of MacGyver!

Caroline was born with primary pulmonary venous stenosis (PVS), a dangerous disease that took her brother Benjamin’s life.

[T]he nurses were trying everything to keep her stable. The flight team desperately needed guidance.

When she was just over a month old, Caroline was flown to the Boston Children’s Hospital Heart Center for treatment. She spent eight weeks in the hospital before we took her home to Iowa.

Two months later, Caroline developed a suspected recurrence of PVS and needed emergent care again in Boston.

My wife Maleia and I did everything we could to save Caroline’s life. Maleia joined Caroline in the medical transport, and our race against the clock began. Caroline’s first flight had gone very smoothly, but this one would be different.

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