THANKS all & Neuropsych appt 7/30...
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|Sat, 07-25-2009 - 12:06pm|
First I want to say thanks to everyone who has posted a reply to any of my posts. I read them all but didn't reply to every individual. Here's what we're doing now...
I managed to get him an appt with the neuropsychologist that saw him twice 3yrs ago. She's the one that did all his IQ testing, an initial intake, a computerized ADHD test and a behavior scale test for AHDH. I don't think my insurance covers her either, but she's 2.5 hours away rather than the 3.5 for the pediatric md who specializes in ADHD that we'd been trying to work with. The message I left mentioned that we had seen her and that I wanted to bring him in, discuss how things have been, his idiosyncrasies, and the possibility that either his meds need changed or he has co morbid conditions or even other possibility altogether. She left me a message that she has an opening next Thurs and I took it.
Now... my thought is that I should somehow get as much info written out as possible about what I see in him now as well as the past (both physiological and psychological/behavioral) and what we did about them. There's a chance I'll have to take my 6yr old with us and that always makes it harder for me to concentrate when talking with doctors. So I have to be especially organized. Whenever I try to think of everything about him that hasn't seemed typical it ends up being a hodgepodge laundry list going all the way back to birth. I'm wondering how to organize the info? Chronologically (birth to now or backwards), based on what they've tested for and how they tested and the results that were found/reported, or some other way that I can't think of?
Plus, often when I try to talk to healthcare people about it, they interrupt or sidetrack me down one path and I realize after the fact that pieces didn't get reported. For example, as I talk about all the things doctor's have suspected and ruled out, they often interupt before I can relay what tests were run or what the results were. Then invariably, they suggest a course that has already been taken but they didn't know about it. THEN, when I mention that we've BTDT, they seem frustrated with me for not having already told them...but it was on my list, they just didn't let me get to it. Does anyone else go through that or something similar? (can ya tell I'm nervous about doctors)
How do I approach this? Like I said, my desire is to run through the old symptoms and new and have someone look at it all w/out any hard and fast adherence to a Dx for fear of 'tunnel vision'. Then, regardless of what gets Dx I'd like to have them develop a treatment plan and the appropriate meds for DS's situation AND have decent follow-up/ongoing care. However, I can't find anyone new to do that within a reasonable distance that also has a true neuropsych background and a decent reputation. So, given that this neuropsychologist has seen him before, albeit before his medical trauma 2 summers ago, how do I ask her go back and use 'fresh eyes' without offending her, which could have negative consequences for DS? I wish I could just 'blame' the illness, surgeries, septic shock etc but I don't think that's right either.
I don't want her to think that I'm 'questioning' her previous dx but yet I kind of am. I think that's why I worded my message to her the way I did, to give her a sort of advance warning. Do you think that's enough? What should I do if it isn't?
At this point, any ideas you have for how to do any of this right would be greatly appreciated.