“I think we’ll pass…”
I said that last week to a nurse at our local children’s hospital after she called to give us instructions for an appointment next week.
“Bring her medication list. Immunizations records and plan for at least a three-hour visit. You’ve been here before so you understand how it works,”she said.
“Um, I thought we were just getting acupuncture. That’s why we were referred.”
She then very politely explained to me that Rosie would need to have a complete evaluation by the pain management doctor before they’d do anything. I was a little stunned. You see, we’ve been treated in the pain management department by our former neurologist. It was my understanding that since they wouldn’t perform the medical acupuncture that was ordered by our GI doctor that this guy would. Now, being told Rosie would have to be submitted to a three-hour visit where she’d not only have to repeat her story once again, she’d have to go through scrutiny by another doctor, I had to make a decision.
Our past pain management clinic experience wasn’t exactly what I would call positive. Outside of medications, the only thing we were asked to try was biofeedback and it didn’t work. Why? While biofeedback helps you figure out how to breathe and relax, Rosie couldn’t. She tried over and over again. Later, we found out that she has POTS and she can’t regulate her autonomic nervous system. The nurse on the phone last week told me she was surprised it didn’t work because it’s great for POTS patients. What she didn’t know is at the time that we tried biofeedback, we weren’t diagnosed. Our referring neurologist never suggested that our daughter might have POTS. Big miss.
The other treatment we received there? Sitting with the pain psychologist twice a year which was torture. Why? When Rosie was in middle school, he looked her straight in the eye and said, “don’t you want to be normal?” Um, yeah, of course she does but she has chronic migraines. She’s not. We were both stunned that a doctor that is trained to work with pain patients would say anything so callous.
As for our neurologist’s pain management regimen, it was drugs. Trying one after another. And, that was all and when it didn’t work and we reached out to another doctor at the hospital, my daughter was erroneously diagnosed with Amplified Pain Syndrome. Treatment (or lack thereof) went downhill from there.
I politely explained all of that to the nurse as nicely as I could and told her we wouldn’t be keeping the appointment that we’d been waiting on for months. I also told her that it wasn’t a reflection on them and that we’ve had good experiences at the hospital but I had to put my child first. Putting her back in an appointment situation like that would be harmful to my teenager’s psyche. We’d find someone to drop some needles in her on our own.
I hung up the phone and felt a sense of relief. Last month, I talked about picking our battles. That we had to tackle the most important health issues first and then go from there. I stand by that 110%. I also stand by the decision I made the last week to cancel the appointment. It wasn’t in Rosie’s best interest. In fact, it would’ve been a horrible experience for her and guess what? She comes first.