This is a little delayed. I blame C for having surgery on both feet lol.
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
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