I find myself at a level of frustration that no one but my husband seems to understand. Our almost 14 year old daughter has been in pain nearly every day of her life for the last 7 years. She has been hospitalized 3 times, we keep her on a strict diet, and have tried numerous preventative and rescue meds... all to no avail. We recently took her to a headache specialist who agreed to see her two months early (he doesn't see patients under the age of 14) and he made some changes to her daily meds. He added a beta blocker to her regime, increased her nortriptyline, and switched her rescue meds to axert.
My frustration stems from a couple of things... one is the fact that while we wait for the increase in daily med and the beta blocker to really kick in, her pain level is close to the worst it's ever been. She doesn't want to miss school and manages to get through her days at school but the misery is apparent as soon as she gets in the car every afternoon. I feel helpless and wish with all my heart that I could take her pain from her.
The other frustration I have is a lack of being able to connect with other parents in the same boat. I had found a group, but the topics focused much more on treatment~which isn't a bad thing, but not what I was looking for~ than on ways to cope with a child in chronic pain and ways to help your child cope. I never truly felt like I could chime in with a question about how they feel when they discipline their migraineur (it seems so cruel to take away the things that help relieve stress or that she truly enjoys or to have her do the dishes for a week, but at the same time, it is unacceptable for her to be mean to her little sister just because she can't take the pain anymore} or how they cope with the stress or how their child copes or how it effects the other child in the house. I would love to know that I'm not the only one who struggles with helping her family get through the day.