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Dialing It Down:

10 Tips to Help Your Child Cope with the Pain & Fear of D-Tasks

Blood tests are the worst.
Followed closely by insulin injections, pump infusion set changes, CGM sensor insertions, and finger pokes to check blood sugar. The reality is that diabetes hurts.

As a parent of a child with type 1 diabetes, I know in my head that the A1C test is valuable feedback on how we’re doing on managing my son’s blood glucose. I know the importance of keeping tabs on thyroid functioning, and of a periodic screen for celiac disease. So my head knows they’re good and necessary tests.

But in my heart they’re the worst. Because for my son they’re painful and sometimes scary.

So how do we help the mind and heart meet, how can we reduce the pain and fear for all of us? Here are 10 ways you can help your child dial down the pain, so they can sail through tests, injections and insertions with confidence.

1. Block the Pain Signal

As the Stanford Children’s Health video Learning How to Manage Pain During Medical Procedures illustrates, pain is created in your brain, and it serves a valuable function during times of danger or injury.

“Pain is your body’s alarm system, telling your brain to pay attention.”

Your brain is like a computer, constantly attending to and figuring out what’s happening to you and around you. To the caveman brain, the sensation of pain yells: “Warning! Danger! Something is wrong!” While this warning system is useful if you’re being chased by a dinosaur, it works against you during medical procedures designed to improve your health and well-being (like insulin injections and fingersticks).

But we can change the warning signal in our body and brain. We have the power to “dial down the pain”. Kids of any age can learn this coping skill; it’s never too early or too late to help our kids learn how to manage discomfort, pain and fear. 

One way we can change the pain signal is by blocking the signal at the source.

  • Numbing creams (like Maxilene and EMLA), sprays or patches physically block the pain signal by reducing feeling at and just below the skin. Active ingredients such as lidocaine and prilocaine numb the area and reduce feelings of discomfort.

Tip from the Trenches

Be careful to match the numbing cream to the procedure. For example, EMLA constricts blood vessels, so if you want to numb the feeling of a blood draw (when shrinking blood vessels would make the procedure harder to do) then EMLA may not be a wise choice. Talk to your child’s diabetes health care team for more information on which topical creams are best for which applications and for your child’s unique needs.
-Michelle

  • Another way of blocking the pain signal is by creating a competing stimulus “between the pain and your brain”, just above the source of the pain. Vibration and cold both work as competing stimuli, interrupting the pain signal coming from the arm or finger or any injection/insertion site.

Tip from the Trenches

I usually avoid talking about D-supplies that are not available in Canada, but on this topic I have to mention Buzzy the Bee! It’s a handheld device that vibrates and cools, minimizing sharp pain from needle sticks like IV starts, blood draws, fingersticks, injections, immunizations, and infusion set/sensor insertions.

Unfortunately the device can’t be shipped to Canada (do I hear a little DIY??). It’s not approved for distribution here – not because it’s not safe to use as indicated; the lack of Health Canada approval has something to do with the sterile manufacturing environment needed for tech to be distributed as a medical device. However, it is available to those of you reading Waltzing the Dragon from the US… if you’ve tried Buzzy, I’d love to hear how it worked for your family.

-Michelle

2. Distraction

If you focus on the sensation of pain, you receive that signal full strength. But if you keep the brain busy you can minimize the feeling of discomfort or pain. When our son is reading a book or playing a videogame, a marching band could walk right through our living room wihtout him noticing. Harnessing that power of focusing on something else – i.e. the power of distraction – is helpful for coping with pain during medical procedures.

What works to distract the brain differs from child to child, and across different age groups. When our son was an infant, we would bat a balloon around during insulin injections, or have his favourite puppet pop up from behind the couch. When he was a preschooler, we would ask him to name as many Thomas the Tank

3. Use Your Imagination

Engine trains as he could, or count back from 10 (with the injection coming at some random time during those mental exercises, so he couldn’t predict when it was coming, and didn’t associate any pain he felt with getting to “one”. The idea is to distract, not to build anticipation and dread.) Now in the double digits in terms of age, he turns on the iPad during infusion set changes, to play games like Animal Escape or Crossy Road, games that require attention and focus. Subway Surfer and Flow Free are also good attention-demanding games, interesting even for older kids and teens. Your child may want to watch TV, watch a movie, read a book, play a brain game… any activity that requires attention and focus (while allowing your child to sit still) is fair game to distract your child’s brain from pain signals.

Many of us daydream when we’re bored. When you “daydream on purpose”, you can apply this cognitive skill to pain management. You can turn down the pain by filling your brain with pictures and sounds from another place and time. To help your child learn this skill, start by practicing during times of calm and relaxation… when you’re cuddling on the couch, in a warm bath, or at bedtime. Talk her through remembering a fun or relaxing time she had recently, or ask guiding questions to create a story in her brain

about her favourite TV characters… Where are you? What are you doing? What do you see? What do you hear? What colour is the car? What animals are around? Is the rock smooth or rough? Ask any other questions that help your child fully experience the created world in her brain. With practice, she can later walk through this exercise (with or without your help) during times of stress or discomfort, such as during blood tests or CGM sensor insertions.

4. Breathe from Your Belly

Deep, slow breaths in and out help calm your body and spread comfort. When you slow down your breathing, you tell your body that you are safe, that there is nothing to worry about.

You can help your child to slow his breath, and to breathe from his belly by breathing slowly with him, modeling a slow, relaxed rate. Try counting slowly, spreading the “in” breath over the count of 5, then doing the same with the “out”. If your child is lying down, he can focus on getting his belly to rise as the air fills it on the “in” breath; this helps him learn to breathe from the belly, not from the chest or shoulders. Again, if you have a chance to practice this skill in the absence of the stress of injections and needle pokes, your child will be more likely to be successful, and as a result more able to use the skill later in the stressful situation.

5. Control Your Thoughts

Remind your child:
You are the boss of your brain! You are awesome, brave and strong. This lets your brain know that everything is a-okay, you’re not in danger, you don’t need the warning signals. Think of things that you’re good at… this can help remind you that you have the power to get through an insulin injection, too. You CAN do this.

6. Control Your Environment

Pain is perceived as more intense when a person has no control over the situation. On the other hand, having control over what’s happening to us can minimize the feeling of pain. So during medical procedures, it helps to let kids call the shots: let your child tell you what to do, when or if to hold her hand, when to be quiet, when and how to hold up the video. Let her decide where and (within reason) when you do the infusion set change, which part of her body to inject the insulin, which site to use for the infusion set. This sense of control can increase your child’s cooperation, and minimize feelings of pain and fear.

7. Demystify the Unknown

To children and teens, medical terms and words they don’t understand create fear; left to their own imagination kids often create the worst case scenario. For example, when a child I know was diagnosed with “diabetes”, all she heard was the word “die.” (How frightening for her!) Take time to talk with your child about the words you use when discussing their disease and its associated procedures. Adopt other kid-friendly words to label and discuss these things, For example, when our son was three he got his first insulin pump; from another D-family we knew, we adopted the term “button” to refer to his infusion sets, saying things like “time for a new button” when it was time to change his infusion set. To help you in your discussions with your child,

you may want to check out the Simply Sayin’ app, which explains medical terms to kids in ways they can understand, without jargon and without overwhelming them.

Experience with medical equipment can also decrease the mystery surrounding injection and insertions. When our daughter recently got her ears pierced, she had an awesome piercing professional, who took time right at the beginning to show her all the equipment she would use. She let her hold the instruments, and squeeze her own finger with the tongs to see that it didn’t hurt. As a result, when it was time for the piercing, our daughter was about as relaxed as she could be, and the piercing went off without a hitch.

Tip from the Trenches

Imaginative play with medical supplies can help a younger child feel more comfortable. You can use an empty insulin pen (or pull the needle out of a couple of syringes) to play doctor or vet: your child can give a “shot” to you, to his teddy bear, or to Lightning McQueen. When our son first got his pump, his pump company gave us a few demo infusion sets so Semi (his teddy bear) could have a “button”, too. When we explored other infusion set brands, he sometimes had a skin reaction to certain brands, so we held onto the rest of the box in that case, so we had a few extras on hand for imaginative play with other stuffies.

Art is another way to take the fear out of D-supplies. I’ve seen beautiful – even funny! – art projects made from an assortment of D-garbage: syringe caps, tubing, cartridge plungers, test strips… you name it.

-Michelle

8. Create Calm

For life in general, parents set the tone for our kids. They look to us to see if and how they should react in unfamiliar or uncomfortable situations. Should I run from that huge dog that is bounding toward us? Nope, dad is smiling and reaching out to pet him. Should I be scared of the stranger we ran into at the mall? Nope, mom is hugging her, she must be ok. Our kids will get over any anxiety they may have about poking their fingers or giving insulin injections if the adults around them are calm and relaxed. And if we don’t feel relaxed, we need to FAKE IT til we make it! Otherwise our kids will catch our stress like a rash from a hot tub.

You can create a calm atmosphere by:
  • Talking in a slow, soothing tone
  • Stroking or massaging your child’s head, back, hand, foot…
  • Holding or rocking a younger child (During blood draws, our son sat in my husband’s lap with his back against dad’s belly for the first several years after he was diagnosed with T1D.)
  • Bringing along your child’s favourite stuffie, doll, toy, or blanket for them to hold for comfort
  • Giving your infant/toddler a soother to suck on

9. Do Something Special after the Procedure

You can create a positive association for un-preferred activities by pairing them with intrinsically preferred activities. For example, after a blood test, we often grab a small snack at the hospital cafeteria. When our son was younger, we would go to the hospital gift shop to buy a small toy. After infusion set changes we often cuddle and read together on the couch. After insulin injections I would give him a hug. It’s up to you whether this pairing involves something tangible (such as a toy or snack) or intangible (such as a shared activity). The only requirement for a positive association is that the pairing involves something your child wants and values. (If I eat Brussels sprouts after cleaning the toilets, that won’t increase my motivation to clean toilets. But dark chocolate with sea salt has a chance!)

10. Write a Coping Plan

Jot down the strategies that you and your child have come up with together, so you can put that plan into action when it’s time for an injection, blood test, fingerpoke, sensor, or infusion set. You may want to include some of the following:

  • My favourite toy is:
  • My favourite TV show is:
  • My favourite movie is:
  • My favourite video game is:
  • People who make me feel safe:
  • When it’s blood test time, I can: (list the strategies your child wants to use)

Ask your child’s health care team about accessing Child Life Services for additional support – it can really make a difference! This department at the Alberta Children’s Hospital has a kid-friendly “My Comfort Care Plan” for your child to fill out.

Tell us what you’ve found that works for your child to manage pain during insulin injections and blood tests… we’d love to share it with the community!

References:

1. I’m grateful to Cathy S., Certified Child Life Specialist at the Alberta Children’s Hospital, my source for much of the information in this article. Our family’s visit with her set us onto a new path of coping and confidence!

2. Standford Children’s Health (2018) Understanding Pain. http://www.stanfordchildrens.org/en/service/pain-management/understanding-pain

This material has been developed from sources that we believe are accurate, however, as the field of medicine (in particular as it applies to diabetes) is rapidly evolving, the information should not be relied upon, as it is designed for informational purposes only. It should not be used in place of medical advice, instruction and/or treatment. If you have specific questions, please consult your doctor or appropriate health care professional.

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