As usual, my anxiety about going to the Syncope Clinic was probably not necessary – our appointment actually went pretty well. We saw Dr. Anderson and he was refreshingly nice and laid back. Basically, he said Em clearly has autonomic dysfunction but was hesitant to diagnose her with POTS or anything specific. Which I am both totally understanding of and very annoyed with. I would have liked a diagnosis because it would have made things easier, but I also don’t want the simplistic diagnosis that locks us into a box.
I have been very busy since Wednesday and planned on sitting down this morning and writing a post about our visit. I also planned on referring to the report that we always get at the end of a visit at Cincinnati Children’s, both so I could record accurate information and make sure my memory synced up with what they put in the report. I was hoping that they recorded the results of her poor man’s tilt table test and perhaps put some sort of diagnosis in writing.
However, I just realized we did not get a report on our way out. I assumed we did, ’cause we always do, but this time we didn’t. Odd, that. Theoretically, we should get a letter in a week or two but who knows. So, I will have to rely on my memory and see about getting a copy of the report next time.
Anyway, he definitely thinks she has autonomic dysfunction going on. Since we are doing basically all of the non-medication treatments and have been for a couple years, about all he could offer us was medication. I really don’t want her on more medicine, but that is about all there is left to try. So, we talked about florinef (I think) vs midodrine. Florinef is easier to take but midodrine is supposed to be more effective. We decided to just go with midodrine. (I will write a separate post about midodrine.)
He wants her exercising more (yeah, get in line) and was happy to hear that she was starting water therapy the next day. He wants us to explore the idea of behavioral therapy/ biofeedback again. His people are giving us more support in trying to arrange it but I am not terribly hopeful about it working out.
We liked him a lot and I have no real complaints (other than not having the report to look at!) about how it went. We go back on July 24th to follow up. He was impressed at how far she had come – a couple years ago, she was in bed and used a wheelchair to get around out of the house. Now, she is so much better* – he said they don’t usually see people get better on their own like she has. But, we all acknowledge that there is room for improvement. With a bit of luck, we will find the path to that improvement through Dr. Anderson.
* I am absolutely sure that Em is better for one reason and one reason alone: the Driscoll Theory. No doubt in my mind – her improvement is not random and it is not a coincidence. The Driscoll Theory did not come up during our visit – our time with him was unusually brief, compared to other specialists we have seen there. But, I am hoping to have a chance to bring it up at some point in the future.