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July 12, 2013 / Tara

Behavior With a Chronically Ill Child


Do you have a child with a physical disability or chronic illness? Do you find their behavior is out of control? Our seven year old was always quite the handful and quite honestly a little spoiled. Growing up with a set of grandparents right downstairs did not help the spoiled part at all! ha! And if you’ve ever lived with your in-laws you know what I’m talking about.

She was always somewhat unhealthy and we spent a lot of time worrying about her, fussing over her, giving her probably more attention than our other two kids. And she learned very quickly how to manipulate us. Oh boy did she ever! But now it’s become that much worse with all her medical issues and the surgeries, long stays at the hospital etc. She’s developed what is called medical trauma and her inappropriate behaviors have gotten worse. This not only affects her father and I, but her nurses, the providers when we have to go to visits and our entire family. What we have learned is that for some people, they experience trauma in their lives and have basically a PTSD response but the event is over and if they get help, they can learn to cope and deal with their feelings about the event. However, when there is medical trauma, for a chronically ill person, the events are ongoing and the trauma is repeated over and over again making it harder to find comfort and coping skills.

For our daughter, she experienced a great deal of trauma when ER personnel placed a NG tube without any type of sedation or explanation. Had I known how bad it would be for her (they of course tell you its nothing), I would have been a better advocate. Later when the tube slipped out of place and she needed it put back in, it took four people to hold her down. I never let them do that again. The next time I insisted she be given some light sedation which helped. But there were multiple next times and she wasn’t able to cope very well because she couldn’t trust that the doctors and nurses (never mind me) were telling her the truth. Every time they needed to do something, it was a fight. And we had to constantly fight with the doctors and nurses to get it. No child should have to be so afraid.

Now that she’s been home the longest she’s been all year (one month,  6 days!), we are still experiencing the residual effect of all this. For instance, at the dentist the other day it took 4 people to convince her to allow the hygienist to put fluoride on her teeth. Something completely painless, but she was afraid. We never did get to the x-rays that day. The amount of embarrassment and guilt a parent feels when their seven year old can’t sit through a simple dental cleaning, is mind-boggling. I may need my own therapy to deal with these feelings. The hygienist did ask what they could do to make it easier on her. Unfortunately it was at the end of the appointment, even though I had switched her to a Children’s Hospital dentist and told them I wanted her seen there because of all her medical trauma. Wouldn’t be lovely if folks communicated? Talking about her fears and anxiety in front of her only makes it worse so as much as I might have advocated better for her at the beginning of the appointment, there isn’t much allowance for that.

The behaviors at home are worse probably because she feels safe here. And I am her usual “punching bag” again probably because she feels safest with me. She is constantly testing the limits which is normal with kids but when it endangers their health adds that extra level of stress to the parents. I can’t just put her in her room and ignore her if she’s having a meltdown because I know she will potentially pull out her CVL or fall and injure herself. If it’s time for medications and she isn’t cooperating, it’s hard to just walk away “until she’s ready” because she has to have them. We are working very hard with her psychologist to try to work on not only her behavior but our responses to her. I think this is going to be the hardest work of all because it is virtually exhausting to deal with on a daily basis. I waver between feeling really badly that she has to go through so much and almost excusing her bad behavior to absolutely no patience or tolerance at all. Need to find that middle ground.

How about you? Do you have a child with chronic illness or a medical disability who is challenging behavior wise? What do you find works to balance their needs and your own for sanity?


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