Taylor Brooks, 14, shown with her mother, Tamiko, has sickle cell disease and struggles with pain.
By Dr. Tyeese Gaines, NBC News
Tamiko Brooks tenses as she recalls an emergency room visit two weeks ago with her 14-year-old daughter, Taylor, as she experienced excruciating pain from sickle cell disease.
“Taylor was crying and moving all around,” says Brooks. “She found someplace comfortable and rocked back and forth in order to deal with the pain. You could just see the tears coming down from her eyes as she said, ‘Mommy can you tell them to give me more medicine? I’m still hurting.’”
Sickle cell disease is a painful inherited condition that causes red blood cells to clog small arteries to her bones, organs, brain and chest.
When sickle cell crises flare, these children can require large amounts of strong IV pain medications to bring the pain down to a tolerable level. For this reason, Brooks and her daughter have had many ER visits for pain control, including the one just two weeks ago.
“They gave her 4 milligrams of morphine, and you have to wait two hours before you can get the next dose,” Brooks explains. “She suffered for two hours. Maybe the protocol needs to be revamped, or maybe they need to up the dose. I don’t know.”
Children’s pain has historically been undertreated in health care settings. In the ER in particular, a child’s pain may go unaddressed or inadequately treated for several reasons. Some of those identified include the comfort level of the doctor giving the medications, how busy the ER is that day, and difficulty in deciphering how much pain a child is in.
A new report out today from the American Academy of Pediatrics instructs doctors, providers and EMTs on the best ways to treat children’s pain and anxiety in emergency settings -- sometimes, without medication.
Videos, bubbles and more
The report mentions tactics such as creating a calm, child-friendly environment, distraction using videos or bubble blowers, and numbing the skin before placing an IV or giving a needle. The report also encourages health providers not to fear the use of IV pain medications in children, when appropriate.
While these efforts promptly decrease the child’s suffering, they can also positively affect how that child views the medical system moving forward, according to the report.
“It can make such a huge difference in the experience of the child and the family,” says Dr. Audrey Paul, pediatric ER physician and an associate professor of emergency medicine at Mount Sinai School of Medicine. “It’s just about being educated and being aware [of the options].”
Paul says she routinely teaches her resident physicians to become comfortable with treating children’s pain, even with strong medications like morphine. She adds that some less-comfortable physicians have an underlying fear of using such medications in children, because too much of it can affect a child’s breathing.
“We always use an appropriate dose [based on the individual child’s weight], and we start with a lower dose first,” she says.
Being able to remember positive ER experiences is even more important for children with chronic, painful illnesses. It’s almost a given that those patients, like Taylor, will see another ER in their future.
Despite Taylor’s most recent experience and less-than-promising ER data, Brooks says she has had mostly positive experiences at her small, community children’s hospital in Chicago, and her daughter is better for it.
“Pain meds are usually given within the first 45 minutes,” she says. “Most of the time we are able to get in and she is assessed in the first 20 to 30 minutes. She’s given pain meds shortly thereafter. A lot of hospitals don’t do that because they have a lot of kids coming into the ER.”
Taylor says that the coloring books, television or being in the playroom also help.
“Sometimes as much as the medicine,” she says.
Helping parents learn to advocate
A study last year in Academic Emergency Medicine had similar observations about busy ERs. Children in pain from arm or leg fractures in the ER were less likely to have their pain addressed during the busier times.
"I think the biggest issue is that parents aren’t really taught to advocate for their kids,” Paul says. “Parents are scared for their kids. They feel powerless. They will defer to the physician, like ‘they know best.’”
Brooks agrees. When she educates other parents of children with sickle cell disease in her role with the Sickle Cell Disease Association of Illinois, she instills in them the need to be advocates.
“Nobody knows your child like you know your child. You’re the first line of defense,” she says. “You see them at their most vulnerable point, and you see them when they’re normal.”
Advocating may sometimes be the only way to get heard, Paul says. “[Emergency departments] are so busy and overcrowded that their pain may not be on the forefront of the doctor’s or nurse’s consciousness,” she adds.
Even though Taylor is a teenager, Brooks still stays with her in the hospital when she’s admitted for crises, “just to make sure that she’s getting what she needs, and to make sure her pain is under control.”
The report supports the common, tried-and-true pain relievers -- ibuprofen and acetaminophen -- especially when children first arrive at the ER in pain.
“There’s good evidence that says that Tylenol [also known as acetaminophen] and ibuprofen are very effective for pain in kids,” says Dr. Howard Mell, an emergency medicine physician.
In fact, a small 2007 study showed that after one hour, ibuprofen alone had appropriately decreased pain in half of the children with musculoskeletal injuries -- more than acetaminophen or codeine, a prescription painkiller.
Mell is the EMS medical director for Lake Health EMS, a large system in suburban Cleveland with 1,800 EMT providers. His protocols encourage administering acetaminophen as needed when transporting a child to the ER for pain.
“We also give a combination of morphine and [nausea medication] for anything that’s obviously major pain,” he adds.
Start pain control in the ambulance
The report’s authors actually agree with this approach and feel that pain control for children can and should be started with EMT providers in the ambulance.
“I think that the more progressive EMS systems have been doing that for a long time,” says Mell. “For us, it’s been in place for years.”
When asked about any concerns with EMT providers, not doctors, giving strong IV pain medications, he said: “EMS providers are very acutely aware of the risks and able to handle them.”
He also applauds the authors for their recommendations.
“I’ve always held the mantra to treat every patient like they’re a member of your family,” he says. “And I certainly wouldn’t want my kid left in pain.”
Paul says that the guidelines will be most helpful in smaller ERs or in rural ERs that don’t see a lot of children, and don’t have such policies already in place.
A doctor's tips on advocating for your child in the ER:
- Stay calm, but be firm. As Paul mentioned, sometimes when the ER is busy, you may have to advocate more firmly. Stay calm, but remind them of your child’s unaddressed pain.
- Be informed. When possible, know and learn about your child’s illness. Have old records and know the most recent results of X-rays or labs. Share what types of pain medication have worked for your child in the past.
- Try it yourself. Attempt to treat minor pains (like ear or throat pain) at home with over-the-counter pain relievers before bringing the child in. If the child is still with pain when you arrive, you can make your case that it’s more urgent.
- Listen before reacting. Sometimes there are medical reasons why your child’s pain can’t be treated immediately. Be willing to hear what the doctors and nurses have to say about it.
- Ask for alternatives. See what options your ER has to distract or treat the pain without medication.
Dr. Tyeese Gaines is a physician-journalist with over 10 years of print and broadcast experience, now serving as health editor for theGrio.com (NBC News). Dr. Ty is also a practicing emergency medicine physician in New Jersey. Follow her on twitter at @doctorty or on Facebook.