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

autism complex care

Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.

But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.

Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. 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. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.

Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”

Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”

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

Caroline-Lake-PVS-sleeping

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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Dietary supplements and athletes: 5 things to know now

athlete dietary supplementAt the 2014 Sochi Olympics, a German biathlete and an Italian bobsledder tested positive for substances banned by the World-Anti-Doping Agency (WADA) — methylhexanamine and dimethhylamphetamine. Both athletes had ingested these substances as part of a dietary supplement they had been led to believe was free of contaminants. However, some banned substances are susceptible to inadvertent use because the manufacturers list them under less recognizable names on the product label.

Both athletes were stripped of their medals.

In other cases, athletes’ use of banned substances is more intentional. Scores of Russian athletes have been banned from competing at the 2016 Rio Olympics following an independent report of a systemic, state-run doping program. (Doping refers to the use of banned/illegal performance enhancing drugs.) Each individual athletic association typically has a list of banned or illegal substances that can be easily accessed by all athletes.

Regardless of whether or not a particular substance is banned, or ingestion is inadvertent or systemic, dietary supplements can present a problem for athletes, coaches and parents.

Diet, dietary supplements and athletes

As a registered dietitian, I meet with dozens of young athletes weekly whose goal is to excel at their respective sport. I work with them to optimize their diets to support healthy development as well as optimal performance and energy balance for sport.

Most adolescent athletes have not yet mastered the proper training and eating behaviors to help them get to where they want to be, which puts them at risk for developing bad habits that can lead to serious health consequences. Many teens are easily influenced by peers and media messages and can be swayed by ads and photos touting the incredible effects of dietary supplements. In a culture that thrives on instant gratification, supplements promising miraculous effects in a short period of time are a true danger to our young athletes.

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Teen with spina bifida and service dog walk a path to independence

A photo of mobility service dog Euro, Adam Paul's "counter-balance"

If picture is worth a thousand words, then how much is this picture worth?

For Debbie Paul, who received the above photo in a text from her son, it is priceless. “It was a turning point in my mind,” she says.

That turning point took place on July 7, nearly two weeks following her son Adam’s graduation as a service-dog handler. Adam, who is 14, going on 15, has spina bifida, a birth defect that involves the incomplete closure of the spinal cord. He was profiled in an October 2015, Boston Children’s Hospital Thriving blog.

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