I'm beginning to feel as if we are rewinding the fall of 2012. Babygirl's headaches are merciless.
Tuesday I called Neurology again to report a couple of things: 1) In the 11 days since they said they would check with Nephrology, they hadn't - but I had, and the new medication had been approved. 2) That on the second and third day of the steroids Babygirl was doing great, but since then she was having headaches at least every other day, including weekends, and is now back to daily. 3) In the 8 days since I had requested to speak to an office manager, I had yet to receive a call back.
The young lady on the phone was fairly sure she had given me the manager's name and number. I asked her name, and she wasn't even the young lady I'd spoken to (lucky for her LOL) 8 days earlier, but she did go hunt down the manager for me and we had a lovely chat. The office manager began by apologizing for not returning my call, and admitting that THAT, at least, was entirely her fault. I outlined my concerns: No one called me to tell me they were doing nothing and I had to ask for help from the on-call doctor, which delayed Babygirl's treatment, and her front desk staff told me (in a sense) how lucky I was to get a call back at all on a Friday afternoon. The office manager agreed that this was not handled at all well from either perspective but did tell me that I had been sent an email about it all (!). (I don't really check my email much - I later searched among 266 emails and found one with no title that I would have assumed was another Ethiopian Lottery offer. It was a cc telling a nurse that they would have to ask nephrology about the new medication - nothing AT ALL about the ones that didn't get phoned in, and nothing addressed specifically to me except that the nurse was to ask whether or not Babygirl takes her allergy medication every day or not).
The nurse called me back and asked all the same questions from the week before: Has she had IV treatment, how long has she had the headaches, what else has been tried....." Ugh. I updated her on the week. Gave her the dates of current treatment and headache pattern. Lists of what she's taken. Noted that she actually called from school because she needed a ride home because of a headache (first time in two years).
Another call. Same story. But I'm getting better at this. "I know you have to discuss this with the doctor, but here is what you need to ask: Can we start the triptans to treat the headaches? Our insurance for sure pays for Imitrex. And, what are we changing to prevent them?"
So the triptans have been started. Prevention is being re-evaluated. If the triptans don't work, we will be going in for nerve blocks to break the cycle, and then Botox.
Going to check the emergency bag contents.