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?