We had an appointment with a sports medicine doc yesterday who specializes in concussions. He gave Caroline a neurological test and she didn't do so great on it, quite poorly on two sections. The doc expressed concern about these results and also concern about how many psych meds she is taking. Most doctors who are not psychiatrists express alarm about how many meds Caroline takes, but what they don't understand at first glance is that A. we didn't start her out on all of these meds at once, and B. that this med combination took YEARS at which to arrive after much trial and error and residential treatment, and
C. she is the most "normal" she has ever been on this combination of meds and can actually do things she couldn't do before like stay in school and learn, play a team sport, write a novel, attempt friendships. I always cringe when I have to go through a meeting with a non-psych doc because trying to convince them she needs all of these meds can be a chore. I find myself feeling defensive and going into "I will show you that I am a smart, capable, intelligent, caring parent who has done her research" mode which probably comes across as a little bit showy. I want to intimidate when I feel intimated.
Anyway, he would not clear Caroline to return to lacrosse yet or any intense form of activity. She can do walking and light jogging, but nothing too strenuous. Bummer. But until we determine if the neuro test results are just her or the concussion, we have to play it safe. He has referred Caroline to an neuropsychologist next week to do more tests. I will bring all of the psych-ed testing we have had done over the years to bring evidence of her lifelong struggle with working memory and processing speed, both of which are in the gutter as far as test scores go. I am concerned this neuropsych doc is going to try to convince us to take her off some of her meds or greatly reduce them. I know we are doing the right thing med wise based on her stability over a long period of time, but I still feel intimidated by "experts" who don't know my kid as well as I do. We shall see.
My oldest comes home from Young Life camp this week, and I must say it has been a nice break to have even one gone from the mix. I miss her though and look forward to her many crazy stories of camp antics and adventures.
7 comments:
Whether the test results are due to the psych meds are not is hard to tell for anyone but I think what medical professionals see when they look at the list and dosages of meds Caroline is on is imminent soft tissue damage and organ damage. Not if, but when. And to what extent.
You might talk to her pdoc (and also get a second opinion about the whole thing) about if she can start to wean from some of the meds, one at a time, that are less effective [trileptal comes to mind]. Keeping in mind that when you wean, the symptoms get worse before they get better. But they do get better. Honestly, though, I think that independent eyes see that she will have to wean from some of them at some point whether she wants to or not as her body will not be able to process all of those meds at those doses for years to come.
Hugs.
Yikes, I hope she is ok!
I used to have people say about my daughters meds... "but she's so little!". Um, soooo? She may be little but it really super sucks to be in her brain.
Tot encourage you... Neuropsychologists can't prescribe meds and will usually defer to the primary doc, who would be your psychiatrist. I worked with the neuro psych's at EVMS and we were very happy to focus on our job- testing- and leave the meds up to the other docs. Hopefully, you will have a similar experience and will not have to justify or feel defensive about anything!
I recently read things about my meds and have decided it's time to come off them. I@m doing it really slowly and taking high concentrates of omega 3 - which has been shown to greatly help bipolar illness and looks after nervous system/circulatory system - all tragically damaged by my meds.(seroquel)
I'm not advocating you do the same. It is a big decision and I don't want the responsibility if nothing else. But I would recommend you read into alternatives - even if it means you can reduce her meds a little with alternatives to support what she does take. My little experiment might lead to a chronic withdrawal syndrome or a life without meds. I won't know till I try. But I understand this is your child and the decision to do anything is HUGE!
I wish you all the luck in the world.
Not quite incidentally, I came to visit today to ask if you'd link up your mental health blog to my mental health (weekly) linky - you have a great resource here I'd love to share with the community and I think our community deserves all the support it can get.
http://wordsinsync.blogspot.com/2011/07/all-new-monday-madness-linky-plus.html
Many thanks, Shah. X
Meg-- Thanks for the input. The funny thing is that it is the high dose of the Trileptal that made the big difference when she went to residential two years ago. Meridell put her on this super high dose and the difference in her was amazing. The Amantadine was the other miracle drug that they put her on. I wish we could reduce meds and dosages, but everytime we try, she becomes unstable and a danger to herself and others. This is quite a catch 22. If I could reduce anything it would be the Lithium and the Seroquel, and it is in my mind to try this when we switch to a new psych doc. Thanks!
Thanks Lisa! :)
Shah- I appreciate your comment. Again, trying to wean Caroline off of all meds would probably be disastrous considering the past attempts. However reducing them if always a possibility and we always hope that she will be able to do with less rather than more. She does take fish oil regularly, but her bipolar disorder is quite severe and we doubt she could ever just use Omegas as her sole mood stabilizer.
I will check out your blog! Thanks!
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