Childhood Cancer

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Childhood Brain and Spinal Cord Tumors

Pain management

The goal of pediatric pain management should be to minimize discomfort during procedures. The two methods to achieve this goal are psychological (using the mind) and pharmacological (using prescription drugs). These two methods can be used together to provide an integrated approach.

Psychological methods

It is essential to prepare for every procedure. Unexpected stress is more difficult to cope with than anticipated stress. If parents and children understand what is going to happen, where it will happen, who will be there, and what it will feel like, they will be less anxious and better able to cope. Here are some ways to prepare your child:

  • Verbally explain each step in the procedure
  • Meet the person who will perform the procedure, if possible
  • Tour the room where the procedure will take place
  • Let small children use dolls to play-act the procedure
  • Let older children observe a demonstration on a doll
  • Have adolescents watch a video that demonstrates the procedure
  • Encourage discussion and answer all questions

Ever since I was diagnosed with my brain tumor when I was 16, I have been doing research. When I go in for tests, I try and learn as much as possible about what this test will show, and how it is done. I think the research that I have done since I was diagnosed has greatly helped me. I feel like the things that are being done will one day help another person in my shoes. Because I am learning new information, it keeps the testing from getting too boring.

Hypnosis, imagery, and distraction are three techniques widely used to help children cope with painful procedures. Following are descriptions of each.

Hypnosis is a well-documented method for reducing discomfort during painful procedures. When performed by a qualified healthcare professional (e.g., psychologist, physician, nurse, social worker, or child life specialist), hypnosis can help your child control painful sensations, release anxiety, and diminish pain. The professional guides the child into an altered state of consciousness that helps to focus or narrow attention. To locate a qualified practitioner, visit the American Society of Clinical Hypnosis’ website at www.asch.net or call (630) 980-4740.

Imagery is a way to create a mental image of pleasurable sights, sounds, tastes, smells, and feelings. It is an active process that helps people feel as if they are actually entering the imagined place. Focusing on pleasant images allows the child to shift attention from the pain. The child can actually alter the experience of pain, which simultaneously gives the child control while diminishing pain. Ask if the hospital has someone who can teach your child this very effective technique.

The following description of using imagery was written by Jennifer Rohloff when she was 17 years old and is reprinted with permission from the Free to Be Yourself newsletter of Cancer Services of Allen County, Indiana.

My Special Place

Many people had a special place when they were young—a special place that they still remember. This place could be an area that has a special meaning for them, or a place where they used to go when they wanted to be alone. My special place location is over the rainbow.

I discovered this place when I was 12 years old, during a relaxation session. These sessions were designed to reduce pain and stress brought on by chemotherapy. This was a place that I could visualize in my mind so that I could go there anytime that I wanted to—not only for pain, but when I was happy, mad, or sad.

It is surrounded by sand and tall, fanning palm trees everywhere. The blue sky is always clear, and the bright sun shines every day. It is usually quiet because I am alone, but often I can hear the sounds of birds flying by.

Every time I come to this place I like to lie down in the sand. As I lie there, I can feel the gritty sand beneath me. Once in a while I get up and go looking for seashells. I usually find some different shapes and sizes. The ones I like the best are the ones that you can hear the sound of the ocean in. After a while I get up and start to walk around. As I walk, I can feel the breeze going right through me, and I can smell the salt water. It reminds me of being at a beach in Florida. Whenever I start to feel sad or alone or if I am in pain, I usually go jump in the water because it is a soothing place for me. I like to float around in the water because it gives me a refreshing feeling that nobody can hurt me here. I could stay in this place all day because I do not worry about anything while I am here.

To me this place is like a home away from home. It is like heaven because you can do anything you want to do here. Even though this place may seem imaginary or like a fantasy world to some people, it is not to me. I think it is real because it is a place where I can go and be myself.

Distraction can be used successfully with all age groups, but it should never be used as a substitute for preparation. Babies can be distracted by colorful, moving objects. Parents can help distract preschoolers by showing them picture books or videos, telling stories, singing songs, or blowing bubbles. Many youngsters are comforted and distracted from pain by hugging a favorite stuffed animal. School-aged children can watch videos or TV, or listen to music, and several institutions use interactive video games to help distract older children or teens.

My daughter went through her therapy prior to the days when kids were given any pain medications for procedures. She and I would make up a schedule of songs for me to sing during the spinal tap or bone marrow. I would stroke her skin and sing softly to her. She visibly relaxed, and the staff found it soothing, as well. I’ll never forget the time that the oncologist, nurse, and I were all quietly singing “Somewhere Over the Rainbow” during a spinal tap.

Relaxation, biofeedback, massage, acupuncture, Reiki (Japanese energy healing), and accupressure are all also used successfully to manage pain. Ask the hospital’s child life specialist, psychologist, or nurse to discuss and practice different methods of pain management with you and your child.

Pharmacological method

Most pediatric oncology clinics sedate or anesthetize children for procedures that are painful or that require them to lie completely still. If your clinic does not offer this option, strongly advocate for it. Sedation and anesthesia have the advantage of calming children, reducing pain, and, in many cases, obliterating all memory of the procedure. Four classes of drugs are used for this purpose:

  • Sedatives, which depress the central nervous system and result in relaxation. The child or teen may fall asleep, but will remain conscious.
  • General anesthetics, which induce a loss of consciousness to prevent the child or teen from experiencing pain or remembering a procedure.
  • Local anesthetics, which temporarily interrupt nerve transmission at a specific site on the body to lessen pain.
  • Analgesics, which relieve pain. Narcotics are a subclass of analgesics that induce sleep and are potent pain relievers. Many commonly prescribed pain relievers combine narcotic and non-narcotic drugs to achieve greater pain relief with less drowsiness and a lowered risk of addiction.

Sedatives and general anesthetics are given intravenously. Some facilities take the child into the operating room (OR) for the procedure; others use a preoperating area or clinic sedation room and allow the parent to be present the entire time. Certain drugs must be administered by an anesthesiologist (a doctor specializing in anesthesia) in a hospital setting. Drugs commonly used during procedures include:

  • Valium® or Versed®, plus morphine or fentanyl. Valium® and Versed® are sedatives that are used with pain relievers such as morphine or fentanyl. These drugs can be given in the clinic, but the possibility of slowed breathing requires expert monitoring and the availability of emergency equipment. The combination of a sedative and a pain reliever will result in your child being awake but sedated. Your child may move or cry, but he will not remember the procedure. Often, EMLA® or lidocaine are also used to ensure the procedure is pain-free.

My son was treated from ages 14 to 17. During his spinal taps he would get Versed® once he was positioned on the table. I would always sit at his head and keep his shoulders forward while his head rested on my arm. (Kind of a hug.) As the Versed® took effect, he would look up at me with huge eyes and give me a grin a mile wide, then he would say something off the wall. He had to spend an hour flat after the spinal tap. He’d be groggy the whole time, constantly asking me what time it was and how soon we could leave. He’d forget he asked and ask me again 5 minutes later. This continued for the whole hour. Later, we’d laugh about it. He never remembered anything from the LPs.

  • Propofol. Propofol is a general anesthetic and will cause your child to lose consciousness. It must be administered in a hospital by an anesthesiologist. It is given intravenously and has the benefit of acting almost immediately with little recovery time. At low doses, propofol prevents memory of the procedure but may not relieve all the pain; thus, it is often used with EMLA® or lidocaine.

Patrick (12 years old) hates the lack of control involved when having a procedure and getting propofol. He attempts to regain some control by verbally explaining to the doctors just exactly how he wants it done each time. He has his own little routine—tells them jokes, sings “I Want to Be Sedated” (you know, the Ramones song), etc. Patrick’s biggest problem is the taste from the propofol. We have tried so many different things when he wakes up to mask the taste—Skittles®, gum, Gatorade®. We now have a supply of Atomic Fireballs®. I give him one as soon as they bring him out, and he says that really helps cover the taste.

There are many types of drugs and several methods used to administer them, from very temporary (10 minutes) mild sedation to full general anesthesia in the OR. Discuss with your oncologist and anesthesiologist which method will work best for your child.

Let’s face it, kids don’t care about lab work or protocols, they just want to know if they are going to be hurt again. I think that one of our most important jobs is to advocate, strongly if necessary, for adequate pain control. If the dose doesn’t work and the doctor just shrugs her shoulders, say you want a different dosage or drug used. If you encounter resistance, ask that an anesthesiologist be consulted. Remember that good pain control and/or amnesia will make a big difference in your child’s state of mind during and after treatment.

Emotions may run high after a difficult procedure. Rather than engage in a lengthy discussion about what went wrong, schedule an appointment with the doctor well in advance of the next scheduled procedure to air your concerns and problem-solve.

Because treatment for brain or spinal cord tumors can take many months or years, some children build up a tolerance for sedatives and pain relievers. Over time, doses may need to be increased or drugs changed. If your child remembers the procedure, advocate for a change in the drugs or dosage. It is reasonable to request the services of an anesthesiologist to ensure the best outcome for your child.

My 5-year-old has been very hard to sedate for medical procedures such as spinal taps. His oncologist experimented with the commonly used drugs, Versed® and fentanyl, to find a combination that would work. For some recent procedures, he was premedicated with Ativan®. Then he was given Versed® and pentobarb instead of fentanyl. I think we’ve got it right now, since the last sedation went very well. He still has a full 24 hours of vomiting and headache afterwards (even when he receives antinausea drugs), but at least we don’t have to hold him down during spinal taps anymore.

Image

A new anesthesiologist suggested nitrous oxide before general anesthesia for my young daughter’s MRIs. Life around MRIs has never been the same. She is actually excited about scans now as if it is some kind of holiday! The first time with laughing gas she started to go “Wheeeee!!!!” I asked her if she was feeling like she was on a roller coaster, and she said, “No, I feel like I’m on the TILT-A-WHIRL!” The next day she said, “Mommy, I don’t want to go to school today, I want to have ANOTHER SCAN!” I can’t say I share her anticipation of a scan, but I am thankful for a good attitude and experience. I keep asking them to share the laughing gas, but they won’t!

Your child will not be allowed to eat or drink for several hours prior to procedures that require sedation or anesthesia. After a procedure, your child may eat or drink when she is alert and able to swallow.

Planning for proceduresProcedures

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