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Managing Your Child’s Pain from Cancer Procedures

 

 

Children with cancer often need many invasive medical procedures. These procedures include lumbar punctures (a needle in the spine), bone marrow aspirations (needle in bone) and biopsies (surgery to remove part of the cancer to find out more information).  Sadly, many children find these procedures cause more pain than the cancer itself.  On top of the physical pain caused by procedures, children with cancer can also have distress and anxiety about getting the procedures done.

The good news is that the pain and distress can be managed by using medications and/or psychological and physical strategies.

Lumbar punctures and bone marrow aspirations may be performed under local anesthesia (medicine to numb the area to stop the pain) and/or sedation (medicine to help the person feel calm and sleepy).  Following the procedure, your child’s doctor may recommend oral over-the-counter medicines or prescribe an opioid for pain management.   It is important for parents to discuss these strategies with their healthcare team to determine what’s best for their child.

Dawn Norman approaches pain management for her son Nathan by using strategies to help reduce his anxiety about procedures.  In this blog, she discusses how her family has learned to cope with Nathan’s pain and anxiety around invasive medical procedures during his cancer treatment.

 

 

by Dawn Norman, mother of Nathan

It is difficult to prescribe a one-size-fits-all technique or routine to help children who are dealing with painful procedures and the anxiety the procedures cause. Every child is different and has different pain thresholds. For some children, the painful procedure might not be what causes the anxiety as much as something associated with it. For instance, our son Nathan, who has been battling brain and spinal cord cancer for eight years since he was two years old, would prefer a needle any day over wearing a hospital gown. A hospital gown…

Preparation before procedures – like practicing the motions and process of the procedure to the extent that it is possible, and discussing the child’s thoughts and feelings about the procedure – can be helpful with reducing pain and anxiety during the procedure.

For Nathan, the three things that cause him the most anxiety are wearing a hospital gown, having the chest leads put on for the EKG during procedures, and having a gauze pad put under his Band-Aid. One of the ways that we help with this anxiety is to allow him control over when and how these things take place. While he understands that most of these protocols are necessary, his nurses and doctors are sensitive to the fact that there are some things we can allow him to have control over. For example, when he was smaller and had to have a procedure that required him to wear a hospital gown, we would let him know that once he went to sleep we would put the gown on him. He was fine with that. We believe in being honest with him about what is going to happen and how he may feel during or after the procedure.

For patients who are hospitalized, many centers have a practice of avoiding painful medical procedures in the patient’s room. This is done to preserve a sense of safety in their room.  Parents may advocate for their child to be moved from the room for these procedures.

Now that Nathan is 10 years old, although he still does not like to wear the hospital gown, he agrees to it as long as they will let him dress back in his regular clothes once he wakes up from his procedure. The chest leads are a different story, they still wait until they put him to sleep before they put those on him and then they try to take them off before he wakes up. The Band-Aid issue is one in which the hospital has agreed to just put the Band-Aid on without the gauze pad underneath.

Communication to the health care team of what works best for your child is essential – don’t be shy to speak up with what you know works well for your child.

Helping Nathan manage the pain that he feels during his procedures, together with allowing him some control over other smaller issues, has helped him to be less anxious during the procedures. The more that we can help manage the anxiety that he feels before or during procedures, the better I believe he deals with the pain that the procedure may cause.

It is important to ensure that the child is physically as comfortable as possible, including considerations such as comfortable positioning and room temperature.

Another thing that our family has heavily relied on is our faith. Before going into procedures, we pray out loud with Nathan and any of the nurses or doctors that are in the room for God to give him peace, healing, and strength. He very much relies on scripture as well as prayer to get him through as well as knowing others are praying for him. Having that peace makes each day bearable. On Nathan’s iPad lock screen he has the quote, “I don’t know about the remaining chapters of my life story but nowhere within those pages will it ever say I gave up.”

This is one of many verses that Nathan relies on:  “Be strong and courageous, do not be afraid or tremble in dread before them, for it is the LORD your God who goes with you. He will not fail you or abandon you.”  DEUTERONOMY 31:6 AMP

 


Resources for Parents:

·     An imagery guide for managing pain in children. It is based on arthritis but can be used for cancer pain too: http://www.arthritis.org/living-with-arthritis/treatments/natural/other-therapies/mind-body-pain-relief/guided-imagery.php

·     A child life specialist at SickKids Hospital demonstrates deep breathing for pain management: https://www.youtube.com/watch?v=mnFhDbpAwBE

 


Reference

Liossi, C. (1999). Management of paediatric procedure-related cancer pain. Pain Reviews6, 279–302.

 


Dawn is a wife to Bobby and mother of 5 wonderful children (Sarah, Matthew, Nathan, Tabitha, and Josiah).  She is a graduate from Liberty University in Interdisciplinary Studies with focus areas of Psychology, Religion, and Business.  She was working on her Master’s degree when her son was diagnosed with cancer.  Her third child, Nathan has been battling brain and spinal cord cancer since 2009 just after his 2nd birthday.  The Norman family started Nathan’s Hope in 2012 to help fund pediatric cancer research and also to help families that were battling with living expenses.  Dawn feels like God never wastes a hurt and tries to use her family’s experience to reach out to other families that are battling with help, hope and encouragement.

 


 

 

Tips to Manage Your Child’s Needle Pain

 

 

Children with cancer endure many needle-based procedures that can be unpleasant, scary, and painful – causing anxiety in the child and their family.  Allowing your child to have some control over such needle-based procedures can go a long way in helping them cope with their pain and anxiety.  

In this blog we will discuss how you can use Topical Anesthetics and Distraction to help manage your child’s needle pain.

 

“It is important for parents to be informed so they can focus on the role that they can play in their child’s pain management.  Advocating for their child to minimize their pain and discomfort, be it physical or psychological, is critical and should not be minimized by the clinical care team.”  ~ Jonathan Agin, Bereaved Parent/Advocate

 

 

Using Topical Anesthetics

 

by  Janessa DeCoste, RN, Nursing Coordinator, Kids Cancer Care

 

It’s 9:00 am on a busy day in the pediatric cancer clinic; six-year old Bobby and his mom arrive to check in for their scheduled chemotherapy.  I greet them and chat with Bobby about the latest superhero toy that he’s holding in his hands.  After we are settled in the clinic I complete my initial assessment and ask the list of questions.  Any fevers? Any unusual rashes? How is your appetite? Have you been going to the bathroom? And then finally I ask okay are you ready for your port access?  A look of pure panic comes over Bobby’s face, and at the same time mom realizes that they forgot to apply topical anesthetic cream  on Bobby’s port (we call it “freezie cream” with the kids, sometimes it’s called numbing cream) before they left for the clinic so that it would be properly numb before the port access.

 

What should I do?

 

Should I apologize and say, “I’m sorry – but we have to get started as soon as possible, and we really don’t have time to wait for the anesthetic cream to set in.”  

Or do I reassure the family and say, “Okay let’s get this cream on as soon as possible and then we can access your port once the cream is ready.  I will call Jenna from Childlife to help us.”

I quickly weigh the options in my head and make the call to go with the second one.

 

As I relay my suggestion to Bobby and his mom to apply the anesthetic cream and that I will call Jenna from Childlife to help with the procedure, a look of pure relief comes over their faces.  Today they remain in control of this small decision in a bigger battle.

 

 

Topical Anesthetics: A Brief Overview for Parents

The following are a few options for topical anesthetics that may be utilised to help numb the area and decrease the pain where the needle will be placed:

  • Anesthetic patches and creams like EMLA™, Maxilene™ and Ametop™. In order to be effective, these products have to be applied 30-60 minutes before the painful procedure. Parents can purchase these over-the-counter at most pharmacies.
  • Topical vapocoolant (cooling/numbing) sprays (e.g., Pain Ease™), available in some hospital settings, are applied to the skin immediately prior to procedures. Parents can ask their health care provider if this is an appropriate option and if it is available to them.
  • Parents should ask their health care providers about any other medications, anesthetics, or sedation that might be appropriate for the procedure.

In the event that there may not be time to wait for topical anesthetics to be fully effective, there are a variety of other options that can be used to help with the pain associated with the needle injections.

Other Options

  • Buzzy® is an alternate way to numb the site where the needle injection will take place by using a technology called “gate control theory”. Using the body’s own nervous system, the gate control theory invokes the concept that the final common pathway for sharp pain to the brain can be shut out by the nerves that transmit cold and vibration senses. This in turn helps to dull or eliminate the pain.
  • Distraction, positioning, hypnosis, and touch can be helpful non-pharmacological interventions.

 

 

Using Distraction

 

By Jenna Schwanke, CCLS, Outreach Specialist & Certified Child Life Specialist, Kids Cancer Care

 

I head to the clinic to help with Bobby’s port access, I remember him from his last chemo treatment. I recall Bobby being a curious little guy; during his last port access he wanted to know everything that was happening and watched the whole thing so I grab my doll and port access kit as well.

 

“Hi Bobby! I’m Jenna – remember me?”

 

Right away I see that mom is flustered and looks a little anxious as the morning hasn’t gone exactly as expected. Bobby is sitting on his mom’s lap, looking equally anxious.  My first goal is to help calm both Mom and Bobby. While Bobby is still on his mom’s lap I pull out my deep breathing dragon and get mom to demonstrate how to take five deep breaths.  As Bobby physically feels his mom taking these deep breaths and feels her body relax, I see him relax a bit too.  Once they appear to be physically a bit calmer, I get out my doll and ask if Bobby remembers what a port access is.

 

“NO” he yells and buries his face in his mom’s shoulder.

 

Bobby is not curious about the procedure today. I encourage mom to keep taking deep breaths and to talk to him calmly.

 

I pull out three toys from my bag – an iPad, bubbles, and a story book. Once mom places him on the bed, she asks him to choose what he would like to do – he chooses the iPad. I help him and his mom find a game to play together.

 

Distraction:  A Brief Overview for Parents

Distraction can be a successful way for you to minimize the pain and distress of needle-based procedures for your child with cancer.  There are a number of key factors that play a role in the success: 1) child’s age 2) child’s coping style and 3) the person who is helping to distract the child (e.g., a parent or “moderator”).

Childs Age:

Having developmentally appropriate distractions is really important in being able to help your child cope with the procedure. Here are some examples:

  • 0-12 months: soft music, rattles, soothing voice/touch, swaddling, cuddling
  • 1-3 years: bubbles, sound/pop up books, musical/light up toys, blowing pinwheel, singing, storytelling, holding hands, comfort positioning
  • 3-5 years: bubbles, I Spy books, watching movies, music, squeeze toys, singing, storytelling, counting, comfort positioning, interactive games or apps
  • 6-12 years: I Spy books, watching movies, electronic games, music (using headphones), jokes/riddles, squeeze toys, bubbles, counting, deep breathing, imagery
  • 13-18 years: Watching movies, music (using headphones), electronic games, reading, squeeze ball, deep breathing, imagery, muscle relaxation

Know Your Child’s Coping Style:

It is also very important to take into account your child’s coping style and interact with your child accordingly. Here is one way to differentiate coping styles:

  • “Sensitizers” are children who feel more in control and comfortable if they can watch the procedure and know exactly what is going on.
  • “Avoiders” are children that would prefer to be distracted and ignore the details of what is happening.

These preferences are not set in stone; be aware that your child can change their preference from day to day.

Tips for the Parent / Moderator:

Children are like sponges and pick up on the feelings of those around them, particularly their parents. Using a calm voice, taking deep breaths and keeping your body relaxed can both physically and emotionally decrease the distress in your child, and allow for the distraction techniques to successfully help them through the procedure.

 


 

Follow us on social media using the hashtag #KidsCancerPain.

Together, we are “Making Cancer Less Painful for Kids”.

 


 

 

JanessaDeCosteJanessa DeCoste, RN, Nursing Coordinator, Kids Cancer Care

Janessa is the nursing coordinator with Kids Cancer Care located in Calgary, Alberta. She coordinates the medical and nursing aspects associated with camp and community programs for children affected by childhood cancer and other hematological disorders. Most of the year-round work she does focuses on ensuring that Kids Cancer Care engages in best practices in the field of pediatric hematology and oncology in a unique setting. She loves having the opportunity to see children and their families outside of the clinical setting not only surviving, but thriving.

 

 

JennaSchwankeJenna Schwanke, CCLS, Outreach Specialist & Certified Child Life Specialist, Kids Cancer Care

Jenna is a family outreach specialist and Certified Child Life Specialist with Kids Cancer Care located in Calgary, Alberta. She spends her days planning and overseeing safe and fun programs and activities for families in Calgary who have been affected by childhood cancer. She loves being able to provide these programs, as it helps provide respite for those on a tumultuous cancer journey. It never ceases to amaze her how many inspiring kids and parents she has met along the way. 

 


 

References

 

Jibb, L. A., Nathan, P. C., Stevens, B. J., Seto, E., Cafazzo, J. A., Stephens, N., … Stinson, J. N. (2015). Psychological and Physical Interventions for the Management of Cancer-Related Pain in Pediatric and Young Adult Patients: An Integrative Review. Oncology Nursing Forum, 42(6), E339–357. https://doi.org/10.1188/15.ONF.E339-E357