"Suffering the Slings and Arrows of Outrageous Fortune"

‘Emily had her year follow up with at the Syncope Clinic at Cincinnati Children’s. It was a relatively brief visit that ended up with him increasing her Midodrine dosage because it is not working as well as it had previously (which was news to me, but that’s ok.). Apparently that is pretty common with Midodrine. He basically said she could increase it to 10 mgs when she needs it and play with an increased dose throughout the day, but hopefully not 10 mgs 3 times a day. That seems like a good plan because it allows her to judge and adjust according to her activity level.

We also had a burning question to ask: what about driving in regards to her autonomic dysfunction? Em is 16 and would like to drive, but I am concerned about her safety while recognizing her need for independence. She was convinced he would say she couldn’t drive (actually, she was convinced that I would convince him that she couldn’t drive) and was predictably grumpy about it. But, to her surprise, but not really to mine, he said she has no restrictions except that she must be mature and responsible and make the best choices for her safety. He has only had one case of a patient actually fainting while driving and there were extenuating circumstances. So, his advice is: If there is any possibility she might faint, she must pull over. She must stay hydrated and take her medicine. She must be aware of triggers that might cause her to be lightheaded or faint. If she is having a bad day, she might need to choose not to drive. Other than that, she can just proceed as a normal teenager. I think that verdict surprised her a lot.

(Now I just have to wrap my head around the fact that my youngest is old enough to drive. :-/ I think we will take it rather slowly and let her get lots of time of instruction in so she feels really confident by the time she actually gets her license. There will probably be lots of prayer involved as well…)

The other drama going into the appointment was that they have always had Em fill out a questionnaire – with questions about her function and other questions she found utterly ridiculous and objectionable. Like, are you depressed, are you bullied, how’s life, etc. She was annoyed the first time she had to do it, peeved the second, livid the third. Her position is that she is not there to be treated for her mental health and it is none of their business. While I sort of agree with her, I also see it from their point of view and know that it actually does all overlap.

This time, she flat out said she would not do it. Period. End of story. If it was to be done, I would have to ‘kill her and physically manipulate her fingers to answer on the touch screen’ ( a direct quote, by the way). That didn’t seem like a really viable option, although I was perhaps a little ready to wring her neck when all was said and done.

While I didn’t personally see it as that big of a deal, she did and I decided to respect that. She has been such a trooper about the craptastic hand she has been dealt and so rarely throws a fit, that just couldn’t see making this my hill to die on, not when she was apparently perfectly ready to make it hers.

And, I want her to be an active participant in her own treatment: she needs to learn to advocate for herself and she needs to be able to take an unpopular position with a doctor and stand her ground. (On second thought, apparently she seems to be fine with that last one! No worries there!) So, I told her I would support her in not participating but she had to find a polite way of refusing. One that did not involve threats of physical violence on everyone involved or general obnoxiousness.

By the time we were called up to get signed in (the point at which the dreaded tablet with the dreaded questions is handed over) she was ready for a fight and I was just sick of the whole thing. And, wouldn’t you know it, there was no dreaded tablet with the dreaded questions this time. No pointless, invasive questionnaire that delved into her mental status. No fight to be had. I don’t know if she was relieved or disappointed!  For myself, I was relieved and I hope that she gained something from the experience that will go with her into adulthood. And, I refrained from wringing the neck of my teenager who decided to act like a teenager for once, so all’s well that ends well!

 

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Comments on: "Our trip to the Syncope Clinic" (1)

  1. Darlene Kimsey said:

    Oh my! I lived with a grown-up VEDS husband who refused to fill out ANY forms at all. But it wasn’t because they were invasive like Emily’s – he had other issues going on. But I have been through a similar experience several times with him. I was relieved too that she wasn’t handed that tablet. You did really good in maintaining your composure before and after 😀

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