Babygirl had her second set of Botox injections on Monday. The first set resulted in a slight decrease in morning headaches for a few days and then she went back to her baseline. According to the studies, about 15% of people who have no response to the first set will respond to the second set, so, I paid the $300 co-pay and set up the appointment (knowing, in advance this time, that it will be $1000 out-of-pocket for the procedure. You gotta do what you gotta do).
After the NP finished the injections, she said, "I don't think you need to come all the way down here in six weeks to tell us how it went. Just give me a call, and if it isn't working we can talk to nephrology about what the next step should be."
I said nothing. Not one word - because ANY word I spoke would have gotten social work or security called on me. I nodded, accepted the discharge papers and left with Babygirl and drove home. I had plenty on my mind, of course: Maybelle was acting sick (good actress, it turns out LOL), I'll need to catch up on work, I'm a little sleepy to be driving so far...
Underneath it all was a dark, simmering rage.
These jokers have been working on Babygirl's headaches for over THREE YEARS. More than two years ago I made one of them develop a list of EVERY SINGLE possible medication they might EVER consider using for her headaches. I made them do it because I was sick and tired of the "we have to ask nephrology" back-and-forth that took, on average, three weeks for every medication change and dose adjustment. She's been on the same useless regimen without an increase or adjustment for over EIGHT MONTHS because the HEADACHE doctor is worried about her KIDNEY.
The list is in her chart. It has been vetted by the kidney specialists and the pharmacy team. It outlines what medications can be used, what precautions must be taken if they ARE used, what to watch for, what blood work to order. ALL THEY NEED TO DO IS CHECK. THE. (add whatever inappropriate descriptor YOU prefer here) LIST.
Tuesday I called our local adult headache specialist and outlined my problem. He gave me the name of two headache clinics, one in Chicago (OMG!) and one in (you guessed it) Philly.
I called Jefferson University Hospital. The headache clinic WILL NOT see anyone under 18. They refer me to a pediatric neurologist (interestingly enough, not the headache clinic at CHOP). I called, expecting that it would be a few months to get in.
We are going Tuesday.
Getting records to them by then is the big challenge. Nephrology is willing to send MRI reports and medication lists but not neurology notes. I'm not all that excited to talk to neurology to ask for those notes, you know?
I sincerely hope it's not a wild goose chase. At the very least, I hope it opens the door to some new possibilities.