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Posted on 2. May 2013

Learning To Cope With Pain

by Annaben Kazemi

As a parent, it can be very difficult to watch our children when they are scared and/or in pain. Our instinct is to protect them and take the pain away. Yet, pain is sometimes a necessary part of a primary immune deficiency disease (PIDD) patient’s treatment plan.

As part of my daughter Arianna’s treatment, I’ve had to watch her undergo medical procedures that are sometimes painful. It was heart-wrenching to see my infant daughter get a spinal tap, and it was difficult to watch when she was a 2-year-old and forced (very much against her will) to drink a barium sulfate suspension so that she could be strapped down to get a CT scan of her gastrointestinal region. Equally distressing was watching her go in for surgery to remove her tonsils, and surgery again for her sinuses. And, forever burned in my memory will be standing by watching her when, in kindergarten, she bravely gave up EMLA cream so that she could get a successful IV after multiple needle sticks.

Arianna is now a young teen, and she understands that distressing medical procedures are necessary for fighting PIDD (such as blood draws, IV needles and discomfort from the side effects of various medications). But, as a young child, she did not - and it was often hard to get her to see how something was good when it also caused pain. However, helping her get ready in advance for procedures made them easier to deal with, and gave me something I could do rather than stand by and watch, lessening my sense of helplessness. Back then, we played with her dolls and “acted out” the expected procedure on favorite stuffy, allowing her to practice with a sample of the medical equipment used. Many of her stuffies got IV needle “sticks,” surgical masks and had blood drawn. Sometimes, the beloved doll or stuffy would accompany us to the hospital and go through the procedure first. This type of play allowed us to help her find coping skills.

When Arianna would ask “Is it going to hurt?” my first instinct was to say it wouldn’t because I wanted to try and reduce her fear or worry. But, it was better for me to tell the truth so that she could trust what I said. I tried to tell her instead that I knew she could handle it; I knew that she would most likely feel some “prick/pain/ouch,” but that she would be able to get through it and be back to her fun activities soon. Thinking about those fun activities and planning them helped her to focus on something other than the painful stick.

Pain is subjective; it is experienced differently by different people, and the only way to know if someone is in pain is by talking with them and seeing how they act. When I talk with Arianna, she tells me that feeling nervous, scared or anxious makes her pain worse. Thinking a lot about it and paying a lot of attention to it also makes it worse for her. As a teen, Arianna is able to cope with pain by pretending to be in a favorite place. She closes her eyes, breathes in slowly and tries to relax by imagining all the things that she would be able to see, hear, touch and feel in her favorite place.

Children respond to painful procedures in many different ways. Since we know our children best, doctors may rely on us to help them understand our children’s pain, while our children rely on us to help them deal with the pain. What have you done to help your child successfully cope with painful medical procedures?


Comments (5) -

Valarie Kinney
7:26 AM on Friday, May 03, 2013

I had 3 young children on IVIG, and many times, it was painful and difficult, fighting with them about who had to go "first", why we had to do it again. There were days I would be alone (but for our nurse) and facing the daunting task of wrangling three screaming kids into agreeing to an IV (and the screaming and hysterics by then making their veins crap for sticking).
It struck us at one point that they should be given something...something more than the typical "pop and donuts" for breakfast, or dollars for the hospital vending machine.
One year for Christmas, we purchased hand held video games that only came out on hospital days. We were begged, prodded and cajoled but held firm. I locked them up in my room until next IVIG. The rule was the games could only come out AFTER the IV was in.....and after that, no limits until the end of the day.
It worked so well, we once again had kids fighting over who had to go first...only now, they were just about knocking each other over in a race for that privilege!
"Me first! Me first! I want to go!" in an effort to get to those games.
CVID has taken much from my childrens lives....I have no problem at all with a little bribe or reward now and again to help reduce the sting of a necessary pain.

Stacy Spoonley
11:26 AM on Sunday, May 05, 2013

My mother is a saint. You can tell it really shakes her that she can't make the pain go away or wave a magic mommy wand, and I hope this article helps MY MOM cope with the pain SHE FEELS because she has to watch me suffer. Thank you for your strength, and BOY OH BOY do we know what you're talking about! Arianna is so strong, and I'm sure you are so proud that you get to be her mommy (I know mine is!!)
Love, light & prayers,
Stacy Face

Linda Thornrose
9:33 AM on Tuesday, May 07, 2013

What wise mothers you are!  God bless you for all you do to take such loving care of your special children.  I am an adult with CVID and know how much I must go through.  God made special moms to do what you do with such love and caring.  I am so touched and blessed by your stories.
Thank you.

8:20 AM on Monday, May 20, 2013

I'm about to be 25 but that doesn't mean I don't need my Mom to be my Mommy Smile Hang in there, the good days are soooo worth the bad days. God Bless

Linda Thornrose
3:52 PM on Sunday, June 02, 2013

Reader, I am 65 and have my mother living with me, so I am blessed to still get 'Momma Love' when I need it!  She has some dementia, but is still 'here' with us and we love it.  And yes, the good days, even though they may be few and far between, are well worth it.  I have been on antibiotics for two weeks now, but hoping my IVIG this coming weekend will help.  I have to get ready for a vacation with my family for heaven's sake!! God bless all of you.

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