美国国家公共电台 NPR Pain Rescue Team Helps Seriously Ill Kids Cope In Terrible Times

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DAVID GREENE, HOST:

Living with constant pain is difficult, especially for young children. Studies estimate that 20% of children worldwide suffer from chronic¹ pain. This ranges from frequent stomach aches to debilitating² pain from cancer, and research shows that their pain isn't managed very well at all. NPR's Alison Kodjak reports on one hospital that's taking an aggressive and creative approach to treating pain in its youngest patients.

ALISON KODJAK, BYLINE³: I'm at the Benioff Children's Hospital at the University of California in San Francisco. It's a new, slick building with state-of-the-art facilities where the sickest children go for cutting-edge treatment, which is why it might seem odd that I'm meeting up with Robyn Adcock.

ROBYN ADCOCK: I am a licensed⁴ acupuncturist⁵ at UCSF.

KODJAK: She's part of a sort of pain SWAT team here known as IP3.

ADCOCK: The Integrative Pediatric Pain and Palliative Care Team (ph).

KODJAK: The team includes anesthesiologists and nurses, as you might expect. And then there's a clinical psychologist, a massage⁶ therapist, someone who practices hypnosis and Adcock, who treat patients with both acupuncture⁷ and acupressure.

ADCOCK: We see cases in the hospital that are end-of-life or very chronic, serious illness or extreme pain cases where their primary team maybe wants more support in managing the pain piece.

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KODJAK: On the day I visit, Adcock is headed to the room of an 11-year-old boy named Miller⁸. He's got a rare and very severe neurological disorder⁹ called dystonia deafness syndrome¹⁰. It's a genetic¹¹ condition that impairs¹² his hearing and causes his muscles to contract uncontrollably.

ADCOCK: So this is the pediatric intensive care unit. Oh, and here's Jessica.

KODJAK: Jessica Greenfield is Miller's mom. She welcomes us into the room where Miller lies heavily sedated¹³.

JESSICA GREENFIELD: The last 48 hours we've seen a significant ramp¹⁴ up in his symptoms.

KODJAK: Miller arrived at UCSF 14 days earlier by helicopter from Sacramento. His dystonia is a rare variation that hits at puberty, and it hit Miller hard starting earlier this year. In the last few days, basically all of his muscles have been contracting at the same time. The medications he's on are barely keeping the symptoms under control, and he can't tolerate any more painkillers¹⁵. Jessica tells Adcock that the acupressure technique she taught them a few days earlier have been helpful.

GREENFIELD: It's not that it stops it, but it gives us these periods in there of interruption where we have something to offer him in between all of this medication that he's getting.

KODJAK: The two women talk for a few minutes about Miller's situation, then Adcock leans over the boy and reaches for his arms.

ADCOCK: Hi, Miller. Hi, I'm going to feel your pulses, and then we're going to do some acupressure again today with you.

KODJAK: Adcock works on him for several minutes, reaching for his arms, his legs, his feet. Jessica and her husband, John Greenfield, sit nearby clutching paper coffee cups. As they watch ad Adcock work, their eyes are clouded with exhaustion¹⁶. Then Adcock beckons¹⁷ Jessica to the bedside and shows her a pressure point she's marked with a tiny radish seed.

ADCOCK: So if you feel this side of the tibia and just - yeah, your fingers will help you.

GREENFIELD: And going front or behind?

ADCOCK: And then it's just behind the tibia. And you'll feel a place - as long as you're just off the bone, you'll feel a soft, deeper spot. And you can let your intuition find it as well. You'll have these landmarks¹⁸ to find it, and then let your finger go there because it will. If you're open and listening with your hands, you'll be able to find the point. And you're on it. It's perfect.

KODJAK: Jessica Greenfield says she knows the treatments help Miller because he often asks her to touch his pressure points between Adcock's visits.

Finding ways to provide comfort like this is crucial because not all pain can be taken away, says Christine Chambers¹⁹. She's the research chair at the Centre for Pediatric Pain Research at Dalhousie University in Nova Scotia.

CHRISTINE CHAMBERS: Every clinician who works with a child in pain hopes that we will be able to take away all the pain. That isn't always possible.

KODJAK: So this interdisciplinary approach helps kids manage their pain, ease it and live with it. Chambers says the problem is that this approach to children's pain is all too rare.

CHAMBERS: Most children won't be able to access these. There are specialized²⁰ centers that offer these interdisciplinary treatment programs but there are not nearly enough of them.

KODJAK: The team at UCSF is one of only a handful across the U.S. Steve Wilson, the chief medical officer there, founded the IP3 team. He says the different techniques tackle different kinds of pain. A child being treated for cancer, for example, may have nausea²¹ and sores in their mouth and stomach from chemotherapy. They could have nerve pain...

STEVE WILSON: Which is like burning, shooting pains that happen in the hands and feet.

KODJAK: Their muscles may hurt just from lying in bed so much.

WILSON: And then they're also likely to be incredibly scared, sad and have what we would call existential pain which is, again, it's not the kind of pain that responds to pain medication, but it's very real. They're suffering, for sure.

KODJAK: So the children at UCSF still get traditional painkillers, but Adcock's acupuncture may be more effective against nausea. A massage therapist can ease muscle aches. A psychologist can help with fear. And art or music therapy can distract children from their pain. Together, Wilson says, these treatments can make the experience of being sick a lot less awful.

WILSON: A lot of times, just walking in the room, you can sense that the child and their family are doing better with a terrible situation. The situation is still terrible, so I don't want to paint a rosy²² picture that somehow everything is wonderful, but it makes a huge difference.

KODJAK: Jessica Greenfield says the acupressure does just that.

GREENFIELD: There's only so much medication he can have, certainly only so much medication we would give him in a home setting. So it allows us a means of providing comfort for him - which is really important for us as parents and for him as a patient.

KODJAK: Alison Kodjak, NPR News.

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