Wednesday, October 16, 2013


I thought I'd take a minute to post about chronic pain in children. I know, as my coworkers can attest, children feel pain. Babies feel pain. Whether born 2 weeks after their due date or 4 months before, they all can feel pain. How they express it and how they cope with it is what varies. A premature infant may only need to be swaddled to cope, or may need huge doses of pain medicine. The fact is everyone feels pain differently and everyone copes differently. As adults we assume that when you have pain you are laying there, crying, unwilling to do anything until the pain is managed properly. But what if you had pain everyday of your life? Would you still refuse to do anything until you received pain control? Even if you knew, adequate pain control will never be reached?

This is our experience this past week. Audrey has chronic neuropathic pain. I can't tell you what she feels on a daily basis. I can say that before she was on her current medication her stomach hurt so bad she couldn't touch it. For those that don't know, neuropathic pain is just what it sounds like, pain in the nerves. There may or may not be a reason for it,there often is not a cure for it. Patients learn to "live with it" while trying various pain meds, anti inflammatories and experimental medications like anti-depressants. This chronic neuropathic pain is very common in mitochondrial disease and can be severely debilitating. We are lucky for now as Audrey's medication, an antidepressant, keeps her pain at a level tolerable to her. Again I don't know what that level is or if it would be tolerable to me but whatever it is she rarely mentions it. So when Audrey says she's in pain I listen to her. When she says she's in pain and needs to go to the hospital, we go.  She is not laying there screaming in pain. She is not crying or lethargic. She is restless and she says she hurts. That is enough for me. Audrey has learned to live her life with some degree of pain constantly. This means that if she wants to play with her dolls she will even if it hurts her stomach to sit up. Because her stomach ALWAYS hurts. She has learned she can't wait to feel better to play, she may not feel better. Ever. So when the doctors come in to assess her knowing she is receiving two IV pain medications on top of her normal medications and they see her sitting up playing with her toys but still saying her stomach hurts, believe her. She has learned to cope with more in her 4 short years than most of us will in our life. She has figured out away to deal with how bad she feels everyday but still play and develop as she should. I ask her medical staff to ignore their preconceptions of how she "should" behave when in pain and take her words at face value. This is true not only for Audrey but for anyone who suffers from chronic pain.