The goal of pediatric pain management should be to minimize discomfort while performing the procedure. The two methods used to achieve this goal are psychological (using the mind) and pharmacological (using drugs).

Psychological methods

It is essential to prepare for every procedure, because 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
• Let adolescents watch a video that demonstrates the procedure
• Encourage discussion and answer all questions

For my child, playing about procedures helped release many feelings. Parents can buy medical kits at the store or stock their own from clinic castoffs and the pharmacy. We had IV bottles made from empty shampoo containers, complete with tubing and plastic needles. Several dolls had accessed ports, and many stuffed animals in our house fell apart after being speared by the pen during countless spinal taps. Christine’s younger sister even ran around sometimes with her own pretend port taped onto her chest. Some suggestions for a child’s medical kit are: gauze pads, tape, tubing, stethoscope, reflex hammer, pretend needles, syringes, medical chart, and toy box. Of course, lots of dolls or stuffed animal patients are required.

Children and teens can learn mindfulness-based, stress-reduction techniques, using thoughtful awareness to help manage anxiety. A psychologist or other specialist who is experienced in mindfulness meditation can teach specific techniques that help children cope with difficult situations. This can be very helpful for your child during and after cancer treatment. You can ask the psychologist at your treatment center to provide a referral to an experienced practitioner (e.g., psychologist or counselor who has training in mindfulness work), preferably one who is covered by your medical insurance.

Guided imagery is another technique children can learn to help manage pain. It is an active process that helps children feel as if they are actually entering an imagined place. Focusing on pleasant images allows the child to shift attention from the procedure. Ask whether the hospital has someone to teach your child this very effective technique.

A 17-year-old wrote the following description of using imagery during procedures. It 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 any time 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. 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. Some institutions use interactive video games on tablets to help distract older children or teens.

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 methods

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, removing all memory of the procedure.

My job as an oral surgery assistant requires me to be very familiar with different types of sedation. From the first day of Stephan’s diagnosis, I quietly insisted on Versed® for bone marrows and spinal taps. We have been in treatment for two years, and they still fight me every time, saying that it’s just not necessary. When I make the appointment I tell them we want Stephan sedated, and then I call and remind them so that all will go smoothly.

Three types of drugs are used for pain management during procedures:

• 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.

Sedatives and general anesthetics. These anesthetics are given intravenously in the operating room (OR) or the clinic sedation room. Certain drugs must be administered by an anesthesiologist (a doctor specializing in anesthesia) in a hospital setting. Drugs commonly used during procedures for children with cancer include:

• Valium® (diazepam) or Versed® (midazolam), 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.

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 spinal taps.

• Propofol: Propofol is a general anesthetic that 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. Propofol prevents memory of the procedure but it does not relieve pain, so it is often used with a local anesthetic (discussed later).

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.

An anesthesiologist, who is also the father of a young child with ALL, said this:

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.

Because treatment for leukemia may take months or years, some children build up a tolerance for sedatives and pain relievers. Over time, doses may need to be increased or drugs may need to be 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. Over three years of treatment, this family needed to work with the team to find methods that were tolerable for their child at different ages:

Sedation is tricky with kids. What worked great for my son at one point in treatment did not work at others. We changed clinics during treatment. At our first hospital, we started out with an anesthesiologist who typically used either gas (a mask) plus propofol, or Versed® plus propofol. My son was just miserable after gas—crying and crying and crying for about an hour. But he was even worse after the IV Versed®/propofol combo. He would try to throw himself out of the bed, scream, bite, and basically just act psychotic for about an hour (he was two years old during this period). Next, they tried ketamine and Versed®. My son was out of it, but never totally asleep (sort of a trance) and within about 10 minutes, he seemed to recover and acted normally. Then we moved, and the new clinic’s standard sedation was Versed® and propofol, which I warned them not to use but they did anyway. That was when my son was diagnosed with “emergence delirium.” We had a lot of back and forth with anesthesia and they tried different combos. We decided to try oral Versed®, which made him act really drunk. It was uncomfortable to see a drunk 3 year old, but it was better than emergence delirium, and they were able to do the lumbar puncture even though he was awake. The oral Versed® worked for about nine months, and then it just didn’t sedate him enough anymore. After a lot of discussion, we tried propofol alone and that was okay—not great, but mostly not terrible.

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

Local anesthetics. There are several types of local anesthetics used to prevent discomfort or pain during procedures.

• EMLA® or LMX®: These are anesthetic creams, which contain a combination of lidocaine and prilocaine or lidocaine alone. The cream is placed on the skin one to two hours before a painful procedure. It is held in place on the skin by an occlusive dressing or adhesive cling wrap.
• Synera®: This anesthetic patch contains lidocaine and tetracaine and is placed on the skin 20 to 30 minutes before a needle poke or other painful procedure for children age 3 or older.
• Ethyl chloride spray: This anesthetic spray can be used right before a procedure to anesthetize the surface of the skin.
• Injectable medications: Some medications, such as xylocaine or lidocaine, are injected into tissues to prevent pain during procedures such as lumbar punctures.

For more information about these local anesthetics, see the section called the section called “Topical anesthetics to prevent pain” in Chapter 13, Chemotherapy and Other Medications.

Danica was age 5 at diagnosis and she learned quickly how to be comfortable with getting her port accessed. She would pop into the chair, pull up her shirt, and be ready to go. The first time her port was accessed, it was still bruised from the insertion of the port, and they didn’t tell me to put the EMLA® patch on it an hour before. That really hurt. After we learned about EMLA®, she did fine and would even remind me to put it on her.

There is also a non-drug option called Buzzy® that parents can purchase without a prescription. It is popular for children who either don’t like or have an allergy to topical anesthetics. Buzzy® uses cold and vibration to block the pain of needle pokes.