Increasing Pain, What Does It Mean?

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“I am worried that my son’s increased pain means that he is getting worse.”

No matter what age your child is, when he feels pain, you most likely feel it too. No matter what the diagnosis, there will probably be episodes of discomfort and pain from the illness or from the treatments that are intended to improve his condition. But when your child hurts, you hurt with and for him. That is why it is important for you to know how to identify pain in your child, learn what you can do to help him, and understand what you can expect from care providers in terms of pain relief. It is also important for you to know that your child has a right to excellent pain relief, to be free from preventable suffering, and to have his comfort needs met throughout the disease process.

 

You are often the eyes and ears and hands of the physician, especially when you are at home with your child, when you live far from the treatment center, or even while in the hospital. You know your child and are most familiar with the subtle changes, expressions of distress, and signs of discomfort and pain. Therefore, you are likely to be the first one to recognize pain or changes in pain in your child and be able to activate the proper relief. Guidelines are available to help you “translate” the cues of pain that you observe in your child and communicate this information to the health care team.

 

Seeing changes or an increase in your child’s physical discomfort is hard for your child and distressing for you. It may be worrisome as well, causing you to privately wonder if this means he is worsening and things aren’t going as well as you had hoped. What does this mean?  It can mean several things. Depending on which medication he has been receiving, it may be time to make one of the following changes:

  •  Increase the dose.
  •  Change from occasional use (as needed) to a regular schedule to decrease his overall degree of pain and be ready for the more difficult times.
  •  Switch to a stronger medication.
  •  Change the medication to match what is causing this recent change in pain relief.
  •  Determine if something has changed in your child’s condition that may have caused an increase in pain, such as swelling, pressure.

 

If you do identify any changes, it is always important to notify the physician or health care team so that they can examine your child and evaluate treatment options, if needed. Communicating with your health care team is very important. They need to be aware of the changes you have noticed as well as subtle differences that you can’t quite put your finger on. You may want to ask what these changes or symptoms indicate and what can be done to provide more clarity about your concerns. Is testing necessary to confirm or pinpoint what is going on?

 

What to do during painful procedures and tests.

Among the ongoing tests and examinations that you and your child face, there will be some that are uncomfortable. In order for the physicians to better understand changes in your child’s condition, they may need to conduct further testing that could be painful. Familiar comfort measures that have been helpful in the past are very effective as a way to reassure and relax your child during these procedures. Your presence itself can be “good medicine” and a relief, reducing the pain and anxiety during procedures or tests. Prepare your child by assuring him that you will be with him during the procedure and work together to create ways to make him feel better, such as rituals, songs, or how you hold him. It will also help to talk with your child about what he will experience during the test, i.e., what things will happen and in what sequence.

 

Some helpful suggestions:

  •  Ask if your child could be offered something ahead of time to prevent or decrease pain during procedures that are expected to be painful.
  •  Offer your ideas about what caregivers could do to make your child comfortable in your absence and to maintain consistency.
  •  When your child is in pain, try to distract him from the discomfort. One way is to help your child think of a peaceful or special place to relax and imagine it with several senses.
  •  Use stories and books to distract and redirect your child’s thoughts. Let him choose one from home or bring several if he is hospitalized
  •  Allow him to have a comfort object, such as a bear, doll, animal, or headset with music while he is getting tests, procedures, etc.
  •  Your voice can be very soothing. If you can’t be present with your child, record your voice for him to listen to through a headset. You could read, say your goodnight words, or reminisce.
  •  Maintain a positive outlook for your child. Offer positive reinforcement and encouragement regardless of the hurdles and challenges you might feel.
  •  Try playing tapes or CDs with relaxing sounds of nature or music-nature combinations.
  •  Wash cloths have a magical way of helping children feel better when applied to a hurting area or to the forehead/eyes as a general soothing measure.
  •  Gentle massage, rubbing, or stroking.
  •  Hold his hand quietly.
  •  Reassure your child that this will pass and the episode will soon be over.
  •  Help your child to be brave and not fearful of the medication by not expressing your own fear.
  •  If your child is hospitalized, consider asking for or advocating for him to have a “safety zone”, i.e., a place where he does not receive any painful procedures, treatments, or tests. Your child needs to have a place that he does not associate with pain or fear.

 

Your infant, toddler, or young child in pain.

What you may be noting at this age is that your child is no longer comforted by comfort methods that worked before. Moreover, comfort measures may take more effort and more time. You may need to augment your set of comfort techniques by considering what helped when he was younger. It is not unusual for children to regress a bit and find comfort from things he had recently outgrown. Your child may be more clingy, more whiny, or needy of your attention and presence to feel secure. The physical changes may make him more insecure and uneasy. You should try to maintain the best level of comfort by preventing pain that can be anticipated during procedures and tests. Try to prepare your child for procedures and other scary things and do your best to calm him beforehand. Information can be empowering and it really helps if your child can feel some degree of control before and during these procedures. Even making eye contact, holding your child, squeezing his hand, or bringing a stuffed animal can be helpful. More suggestions are listed below.

 

Pain in a child between 5-12 years of age.

It is likely that your child will want to be brave and may want to understand what he can do to alleviate the pain. He is probably able to understand the relationship between the disease process and the pain when given information about his bodily functions. He will benefit from simple coping strategies so that he can feel some level of control over the pain and his body. He may be reluctant to let you know that he is scared or worried but may still have an increased need for your presence. You should reassure your child that he is well cared for, that he is not alone, that you will help him feel better and get what is needed to make him comfortable again. It is important for him to know that this pain will pass and that he will get through this episode.

 

Your teenager in pain.

Teenagers will usually be more private about how they feel and the best way to approach them may be to offer choices so they do not feel so vulnerable. Your child will be able to understand the fluctuations in pain relief if given explanations that are age appropriate. He may need more privacy and want to be part of discussions with the health care team so that he can understand what are for and how they work. Relaxation and breathing exercises may be helpful so that he can use these strategies on his own when he is feeling anxious or worried. Give him chances to offer his opinion and describe what he is feeling – physically and emotionally. Be sure that he knows what to expect with new medications or developments in his condition, such as the possibility of feeling more sleepy or constipated, etc. This information will help him feel more informed and manage the symptoms and pain better.

 

Article contributed by Liz Sumner, RN, BSN
Palliative Care Coordinator, The Elizabeth Hospice