SMA and Spinraza: A tale of two siblings

Kernan and Braeden Farrrell, who have spinal muscular atrophy, wave for the camera. When Kernan Farrell started falling and losing developmental milestones shortly before her second birthday, her parents, Kristen and Jim, knew the cause right away. Like her older brother, Braeden, she was born with the gene for spinal muscular atrophy (SMA), a rare genetic condition that causes weakening muscles throughout the body. They had been watching and waiting, wondering if and when Kernan might start showing signs of the condition.

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The PAO buddy system: Healing through connection

Leigh Lozano and Alyse Scanlon PAO patients Thriving lead image

For people with significant orthopedic hip conditions such as hip dysplasia, a periacetabular osteotomy (PAO) is a major surgery that can reduce or eliminate pain, while also increasing hip function. However, the post-op recovery and rehabilitation process can be long and sometimes painful.

“Recovery is an up and down process,” says Ariana Moccia, a nurse practitioner who works closely with patients in the Child and Young Adult Hip Preservation Program at Boston Children’s Hospital. “It’s important for patients to be able to share their frustrations and successes with somebody who really understands.” That’s why Ariana and orthopedic hip preservation surgeon Dr. Eduardo Novais have been working to connect prospective PAO patients with others who have already gone through the surgery.

Three of the patients who helped initiate the PAO “buddy system” at Boston Children’s share their experiences.

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Stroke in kids: What’s different?

pediatric stroke
Illustration: Fawn Gracey

Every May, we recognize National Stroke Awareness Month to honor everyone who has experienced a stroke — and to raise awareness of this disease. That awareness is especially important for pediatric stroke, which is more common than you might imagine. “Stroke occurs throughout childhood, from birth through 18 years of age, and more commonly than people think,” says Dr. Michael Rivkin, co-director of the Stroke and Cerebrovascular Center at Boston Children’s Hospital. “In fact, among newborns, its occurrence is very nearly that of its occurrence in older adults.” Here, he shares four facts parents need to know about pediatric stroke — and how it differs from that in adults.

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Kids aren’t immune.

Despite the misconception that stroke is a disease of the elderly, anyone can experience one — including infants and children. Babies can even have strokes while they are still in their mother’s womb. All told, strokes occur in an estimated 1 in 2,500 live births and affect nearly 11 out of 100,000 children under age 18 every year. The risk of having one is highest in a child’s first year of life, particularly during the few weeks before and after birth.

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Kids can have different risk factors.

Most of us are familiar with the factors that can raise the risk of stroke in adults, such as cardiovascular disease, an irregular heartbeat, obesity, diabetes and smoking. But children are more likely to experience a stroke for different reasons, says Dr. Rivkin. Common risk factors for pediatric stroke include congenital heart disease, blood vessel abnormalities (such as arterial dissection and moyamoya), disorders that increase the blood’s tendency to clot (such as sickle cell disease), infection or inflammation.

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Kids can have different symptoms.

In adults, we’ve been taught to look for the most common warning signs — classic symptoms such as facial drooping, arm weakness or numbness and speech difficulties. Although these signs can also be used to help identify the problem in children, kids can exhibit other symptoms as well. Newborns and young children may be extremely sleepy, use only one side of their body and experience seizures. In children and teenagers, severe headaches, vomiting, dizziness and trouble with balance and coordination, as well as seizures, may signal a stroke.

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Kids tend to recover better.

Because children’s brains are still developing, they tend to recover better than many adults. Indeed, the problems that result from the stroke (such as weakness and numbness) can often improve over time with therapy. A team approach to pediatric stroke — including child neurologists, hematologists, neurosurgeons, interventional and neuroradiologists, physical and occupational therapists, speech and language therapists, neuropsychologists, educational specialists, and physical and rehabilitation medicine physicians — is optimal. “We understand that a multidisciplinary and intensive approach to care of children with stroke provides the best route to recovery,” says Dr. Rivkin.

Learn about the Stroke and Cerebrovascular Center.

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Kids and blood pressure: What every parent should know

hypertension in children

We tend to associate hypertension with older age, but the truth is that anyone can develop high blood pressure — even kids. In fact, pediatric hypertension occurs in 2 to 5 percent of kids and is one of the top five chronic diseases in children, according to the American Academy of Pediatrics. While an elevated blood pressure reading may seem alarming, it isn’t always a sign of a more serious disease. Here’s what every parent should know about blood pressure in kids.

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