A child with cancer or other diseases treated at St Jude will likely have pain at times. The pain can keep him from being active, from sleeping well, from enjoying family and friends, and even from eating. Pain can also make him feel afraid or depressed. When your child hurts, it is important that he feels a sense of control over the pain. Fortunately, the more you know about pain, the better you will be able to help your child. It is important for you to understand the kind of pain he is having, what affects the pain, and the best way to help him cope with the pain. Rather than allowing your child to feel helpless, you can help him learn skills that will help reduce pain.
If your child is feeling pain, it is very important that you tell the doctor or nurse as soon as possible. With treatment, most pain can be reduced easily. If the doctor is having a hard time relieving the pain, St. Jude has a specialized group that can help – the Pain Management Service, also called the Pain Team. They can be called at any time, day or night, to help treat the pain.
What causes pain?
Pain can have many different causes. Most cancer pain comes when a tumor presses on bones, nerves, or body organs. Treatment of an illness can cause pain as well. Your child may also have pain that has nothing to do with his illness or its treatment. Like everyone else, he can get headaches, muscle strains, and other aches and pains. You should check with your child’s doctor or nurse about what to do for your child for these everyday aches and pains before giving him more medicines.
- Pain related to a procedure, treatment, or tests such as IVs, injections, and lumbar punctures (spinal taps). It is usually localized to the site of the procedure. If your child is having a procedure such as the insertion of a needle into a vein, an injection, or a lumbar puncture (spinal tap), ask your doctor or nurse about the use of numbing medicines.
- Pain related to cancer or its treatment: Pain from a tumor pushing on body parts can be reduced by using medicines called analgesics. If your child needs to have surgery or if he has side effects from chemotherapy or radiation therapy, your child’s doctor or nurse will tell you which medicines will work best for the type of pain your child is having. If your child describes pain using terms such as “tingling,” “shooting,” or “like needles,” his doctor may prescribe specific medicines to reduce pain involving the nerves.
If your child is in pain, he may do one of the following:
- Complain of pain
- Cry, moan, be irritable, or withdraw quietly
- Be restless or not want to move at all
- Hold or guard the area of discomfort
- Not eat or drink as much as usual
- Have trouble sleeping or sleep too much to avoid the pain
Your doctor and nurse will ask your child to tell how much he is hurting by using one of three methods:
1. The FACES pain scale-revised (FPS-R):
2. If your child is old enough, he may be asked to rate how much it hurts from 0 to 10 without the FACES pain scale.
3. If your child is too young to rate his pain, your doctor or nurse will use a scale (called the FLACC) as they watch for behaviors that might mean your child is in pain.
You know your child better than anyone, so tell the doctor or nurse if your child is acting differently than normal. Talk to your child about what he is feeling and thinking.
- Your child's thoughts about what he hears are important. (“I was told this will hurt the last time, so it will hurt this time.”)
- The beliefs he has learned influence what he tells you about his pain. (“I'm a big boy, and big boys don't cry!”)
- Emotions influence the amount of pain. (“Where's my Mommy? I'm scared without my Mommy!”)
- Attitudes from other people play a role. (“It's expected to hurt at least some.”)
Be careful not to reinforce negative thoughts, beliefs, emotions, and attitudes. These are some helpful responses to your child's pain:
- Inform your child about what is happening to him, if he wants to know about it.
- Acknowledge the pain; do not minimize or deny it.
- Make physical contact with your child. Hold his hand or give him a hug.
- If possible, remain with your child until the pain is controlled.
- Talk about the positive steps that are being taken to reduce his pain.
- Help your child do something to make the pain go away.
- Keep your own anxiety under control and remain calm.
- Support your child's way of coping.
- Work with your child’s psychologist to learn ways to help other than medicines.
Treating cancer pain
Pain treatments work differently for different people. You need to fully understand how your child’s medicines should be given and follow those directions carefully. Because some actions can lead to serious or even dangerous results:
- Do not give your child more medicine than is prescribed by the doctor;
- Do not give your child medicines prescribed for someone else;
- Do not give the medicine more often than prescribed;
- Do not stop giving the medicine abruptly without your doctor’s advice;
- Do not crush pills that you were told cannot be crushed, cut, or chewed; and
- Do not add any other over-the-counter medicines or herbal remedies without first talking to the doctor.
Your child may not get the pain relief he needs from just using medicines. Surgery, radiation therapy, and other treatments can be used to give even more pain relief. It is important that you tell the doctor or nurse how your child feels and whether or not the treatments are helping. Sometimes patients worry that their doctor or nurse will think that they are complaining, but this is not true. Your child’s doctor and nurse need this information so they can find the right pain medicine and treatments for your child.
Here are some things to help make the pain go away. These techniques may not be a substitute for pain medicine, but they can help the pain medicines work better.
||How it works
|Reframing / Thought Stopping||
|Imagery / Hypnosis||
* consult your doctor or nurse before using these techniques
Common questions parents ask
Do infants and children feel pain?
Yes. The belief that they do not experience pain is not true. Even though they are unable to talk about it, infants and children do feel pain. Therefore, they need to be treated with the same care and concern given to adults in pain.
Do children always admit to having pain?
No. If children are experiencing pain, they may be afraid to tell someone about it.
Can children really tell us if the treatment of their pain is working well?
Yes. Children are the experts of their own pain. Even very young children can tell us when they are in pain and how much they are hurting.
Will my child become “addicted” to the pain medicine?
No, except in very rare cases. Some parents and children worry about becoming “addicted” or “hooked” if they take pain medicines. Drug addiction means that a person is taking a drug to get a mental “high” instead of relief from real pain. However, patients with cancer take pain medicine to relieve pain so that they can be as active and comfortable as possible. The truth is addiction is very rare when medicine is taken for pain control.
If my child takes large doses of pain medicine now, will it stop working later when he really needs it?
No. The medicine will not stop working. Sometimes, however, your child’s body might get used to the medicine, which is called “tolerance.” If this happens, your child will need to be prescribed more pain medicines, but this will not cause any harm to him.
Can’t my child just “tough it out”? What about the old saying, “No pain, no gain”?
It is unacceptable for a child ever to be in pain. Being sick and having to undergo treatment is hard to go through and scary enough for anyone. Untreated pain does not make them “tough” or help them to build character.
What can I do to help my child with his pain?
- Be calm and have a positive attitude that the doctors and nurses will reduce the pain as much as possible. However, you should not say “this won’t hurt at all.”
- Control your own anxiety and do not show negative cues such as gasping, flinching, and cringing.
- Do not scold or punish your child for not cooperating.
- Avoid helping to hold your child down during a procedure. Instead, hold his hand or offer ways to distract him from the procedure.
Can I stop giving the pain medicine to my child if his pain goes away?
No. You need to check with your child’s medical team. Gradually stopping pain medicines helps avoid side effects. The slow decrease is important because the body has become used to the medicine much like your body gets used to nicotine or caffeine. Gradually stopping the medicine will allow time for the body to get used to not having the medicine. It does not mean your child is addicted to the medicine.
If you have questions or concerns, please call 901-595-3300 and ask for your primary clinic. If you are calling after hours or on the weekend, you can ask for the doctor on call. Outside Memphis, dial toll-free 1-866-2STJUDE (1-866-278-5833) and press 0.
This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.
St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.
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