Stories about: pain

The diagnostic odyssey: Parents shed light on their experience

the diagnostic journey
Robert Salmon: Storm at sea (Wikimedia Commons)

Nikkola Carmichael, MS, CGC, is a parent and a genetic counselor in the adult genetics clinic at Brigham and Women’s Hospital. Her research was conducted as part of her master’s degree in genetic counseling in conjunction with colleagues at Boston Children’s Hospital.

When a parent or provider first becomes concerned about a child’s development, a diagnostic odyssey begins. It may be brief or can stretch for years as a child undergoes multiple procedures and medical appointments in the search for a diagnosis.

This is a challenging time for families. While learning to address their child’s health needs and fearing for the future, parents may have difficulty accessing support services due to the lack of a diagnosis. Against this backdrop of emotional turmoil, parents strive to support their child through medical procedures that can be painful or frightening.

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Putting a number on pain: A systems neuroscience approach

Wong-Baker pain faces subjective objective pain assessment systems neuroscience David Borsook
Subjective measures of pain, like the Wong-Baker face scale (above), are useful in assessing patients' pain, but objective measures would be far better.

“How much pain are you in?” It’s a harder question than you think. Tools for assessing patients’ pain—be they children or adults—rely on their perception: a subjective measure that eludes quantification and can change in response to any number of emotional, psychological or physiological factors.

Being able to objectively quantify pain could open the door to better pain management (especially for patients with chronic or neuropathic pain), better anesthetic dosing during surgical procedures, better understanding of addiction (and how to avoid it) and more.

To do so, we need measurable markers: physiologic parameters that reliably and quantitatively change during the experience of pain. But according to pain researcher David Borsook, MD, PhD—of Boston Children’s Hospital’s departments of Anesthesiology, Perioperative and Pain Medicine and Radiology—discovering such markers requires a better understanding of the larger context and of events that trigger pain, a perspective he refers to as “systems neuroscience.”

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Brain stimulation advances toward application in pediatrics

Rotenberg_AlexanderAlexander Rotenberg, MD, PhD, is a pediatric neurologist and epileptologist at Boston Children’s Hospital and director of the hospital’s Neuromodulation Program.

In recent years, electrical devices stimulating the brain or peripheral nerves have emerged as clinical and scientific tools in neurology and psychiatry. In 2014, the Food and Drug Administration has approved three tools at this writing: a device for treatment of epileptic seizures via electrodes implanted beneath the skull; a device for shortening migraine headache via transcranial magnetic stimulation (TMS) of the brain; and a transcutaneous electrical nerve stimulation (TENS) device for migraine prevention. (Click image below for details.)

Stimulating the nervous system to treat neuropsychiatric symptoms is not new. In the first century AD, the Roman physician Scribonius Largus documented treating headaches by applying electric torpedo fish to the head.

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Bacteria use pain as a weapon

It’s bad enough that invasive infections are painful. New work suggests that pain is only a means to an end for virulent bacteria: It’s how they suppress our immune system.

Staph found near fibers from pain neurons
Invasive methicillin-resistant Staphylococcus aureus (labeled by green fluorescent protein) are found close to pain nerve fibers (labeled by red fluorescent protein) in dermal skin tissue following infection

Previously, the pain from invasive infections like meningitis, necrotizing fasciitis, urinary tract infections, dental caries and intestinal infections was thought to be due to the body’s immune response, causing the infected tissue to become inflamed and swollen.

Not so, says Boston Children’s Hospital neuro-immunologist Isaac Chiu, PhD. Studying invasive skin infections caused by methicillin-resistant Staphylococcus aureus (MRSA) in live mice, his team’s research demonstrates that the pain is induced by the bacteria themselves, and kicks in well before tissue swelling peaks.

Adding outrage to insult, once the pain-sensing neurons are activated, they suppress the immune system, potentially allowing the bacteria to proliferate, finds the study, published last week in Nature.

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Mounting a lasting blockade against pain

Saxitoxin produced by dinoflagellates (above), algae and shellfish could help stop neuropathic pain before it starts. (fickleandfreckled/Flickr)

A cut, a bruise, a scrape…these can all cause pain that, while unpleasant, usually passes quickly. But for an estimated 3.75 million children and adults in the United States with neuropathic pain, the pain is debilitating and never goes away.

Caused by diabetes, shingles, nerve trauma, cancer and other conditions, neuropathic pain is basically a sign that someone’s nervous system has lost track of what should and shouldn’t cause pain.

There are ways to treat or control neuropathic pain, like lifestyle changes and a range of medications, but they don’t target it at its source. Boston Children’s Hospital’s Daniel Kohane, MD, PhD, wants to do just that: to go for the root of neuropathic pain, maybe even stop it before it starts. And he’s doing it with microscopic beads full of a neurotoxin found in shellfish. 

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Stopping the pain of sickle cell disease at its source

sickle cell pain
The pain of sickle cell disease can be unbearable. But there’s a new view emerging on how that pain comes about, one that has spurred a new clinical trial aimed at stopping the pain at its source. (stevendepolo/Flickr)

If there’s one thing most patients with sickle cell disease will agree on, it’s that sickle cell hurts. A lot.

The characteristic rigid, sticky, C-shaped red blood cells of this inherited disease tend to get stuck in the small blood vessels of the body. If so many get stuck in a vessel that they cut off blood flow, the body sends out a warning signal in the form of searing pain that doctors call a pain or vaso-occlusive crisis (at least, that’s the historic view; more on that in a minute). The pain can happen anywhere in the body, but most often occurs in the bones of the arms, legs, chest and spine.

Preventing flare-ups—and stopping them when they happen—is a major part of the care plan for any patient with sickle cell. Right now doctors try to avoid pain crises largely by diluting a patient’s blood with fluids or transfusions, thereby keeping the numbers of sickled cells relatively low.

What these treatments don’t do is tackle the pain directly. Doctors can use pain medications, but over time, patients can become tolerant to painkillers, requiring ever-larger doses. What’s needed is something that can stop the complex cascade of events that ignite a pain crisis.

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Empowering patients: Intelligent devices and apps for better health

Melinda Tang, MEng, is a software developer for the Innovation Acceleration Program at  Boston Children’s Hospital.

When children return home from the hospital after surgery, parents can be overwhelmed by the written information and instructions for follow-up. At the MIT Media Lab’s Health and Wellness Hackathon earlier this year, the focus was on empowering patients to take an active role in their health. As my colleague Brian Rosman described, our team from Boston Children’s Hospital attended and spent two weeks developing “Ralph,” a mobile application for managing post-operative care that incorporates an avatar and features of gaming to engage and motivate children to follow their regimen. I was one of the primary programmers for our group.

We won third place, working alongside five other talented teams. Here are some snapshots of what they were up to — helping patients manage asthma, diabetes, pain, cardiac rehab and more.

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Genes that fly in the face of pain

(Image: IMP-IMBA Graphics Dept 2010)

Ever wonder why some people are less sensitive to pain than others? It’s not simply that they’re brave, and the rest of us are wimps. Classic studies of twins indicate that about 50 percent of variance in pain sensitivity is inherited.

“Across a number of different kinds of pain, genes seem to be at least half the driver of how much pain you experience,” says Clifford Woolf, PhD, director of the F.M. Kirby Center and Program in Neurobiology at Children’s.

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