Friday, July 1, 2011

The Evolution of a Diagnosis

June 1 was D Day around here.  Or perhaps I should say Dx Day.  If I had written this post on any of the last 30 days, it would be completely different, and probably have any one of 30 different titles.  If I stop now and come back to it tomorrow, this post - it's text, and the feelings it conveys, the picture of life it paints - will be different.

The diagnosis itself was a bit anti-climatic.  For the most part, there were no surprises, only confirmation of what we already suspected.  The pediatric neurologist confirmed what may turn out to be the most innocuous aspects of Bean's uniqueness: Tic Disorder which will in all likelihood become Tourette's Syndrome.  This is what we brought in with us when Bean and I walked into the exam room.  We left with that plus additional, generalized labels: OCD, ADD, and Anxiety Disorder, with a likely side dish of mild Autism Spectrum Disorder - and - surprise! another referral, this time to a child psychiatrist (or if we preferred, a developmental pediatrician) who could further parse the diagnosis and give specific recommendations.  The neurological diagnosis had the same effect of trying to get a comment from a high-powered PR firm about a celebrity scandal (in the most blustering, yet Groucho Marxish tones your imagination can muster): "We can neither confirm nor deny the presence of OCD, ADD, Anxiety, and Asperger's in this child, but that area of the brain is certainly lit up like a Christmas tree."  

Neither Dr. Yap or I have any interest in figuring out why Bean is the lucky recipient of the alphabet soup diagnosis.  We are pro-vaccine and have no interest in that particular discussion.  Her difficult birth could certainly be a culprit.  Brain Doc was quick to pin the blame on genetics and tried to do me a favor by fingering the anonymous donor, but it didn't take much to figure out that there's plenty of questionable fruit falling close to my side of the family tree: anxiety, OCD, social maladjustment, insomnia - all the major food groups of basal ganglia dysfunction are well represented by me and any branch surrounding me.  That's why it was easy for Dr. Yap and I to brush off Bean's sleep issues and why her many compulsions bothered Dr. Yap more - they looked familiar to me.  On the other hand, Bean's intransigence and difficulty with change also looked familiar (ahem, Oma) and Dr. Yap handles Bean's lack of adaptability with more ease than I do because she didn't grow up with it.  It really comes as no surprise that one region of the brain is responsible for all these related attributes. 

We had already followed earlier advice from Kid Doc to make an appointment with a local neuropsychologist for complete testing.  That will happen later this month.  Dr. Yap and I feel like we can't really do much with the information we already have until we get the results of the assessment.  It's like we've been given the ingredients, but don't have the recipe yet - or some other better metaphor for playing without a full deck.  

Or maybe it's more like getting a diagnosis in slow motion, a little bit at a time.  I began this week with a pre-assessment meeting with the neuropsychologist, delivering the already thick packet of checklists and vital info about Bean that she sent us to fill out several weeks ago.  Based on our meeting, and the Bean we portrayed on paper, the Neuropsych already has an idea which way the the diagnosis  will go.  She can't say that of course, but I can tell by her questions and comments what she's thinking: "Did she look at you or the object when she asked for something as a toddler?...I'd be surprised if you told me her handwriting wasn't atrocious...You will probably find the ADHD symptoms will fall away...You will need to start tracking all behaviors and responses to situations as they come and go - five years later you will be seeing them again...Other people will be involved as we go forward - they will know things you don't and you don't want to be the ones to implement everything...If you have twenty kids in a room with the same diagnosis, they will behave twenty different ways..." These are the pieces of conversational lint that stuck, what I am left with several days later. 

So we go forward, knowing more but not nearly enough.  I suppose that could make it all easier to digest (again with the food/eating metaphors), but it's also maddening.  There are days that Dr. Yap and I spend the day identifying everything little behavior that goes with what we've always known, but now has a name (or names).  Other days, we just think it's best to forget the whole thing and carry on like always.   And then there are the days when we wish we already had the better toolkit we hope to receive (or at least be pointed toward) at the end of all the testing.  Or the "bad" days when we're glad we already have something we can tell the staff at the school where Bean is attending summer workshops.  Some days others say "We thought she was just really bright" or "She seems to handle things so much better than other kids with similar issues."  And we agree.  

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