Friday, February 22, 2013

What We Know Now

Nothing. Except that the MRI was normal. That is grounds for celebration, of course, but what it really means is that the diagnostic journey continues.

The neuropsych will be finished on Tuesday, and then I will BEG the psychologist to expedite her report because the neurologist really, really needs it. I will resort to bribery if necessary (as in, "If I pay extra, can you get it done in a week instead of a month? Or can you just call the neurologist TODAY and talk to her before you write the report?").

On Wednesday we drive forty-five minutes to Woburn so Benjy can be wired up for his 72-hour EEG. And maybe our answer will come out of that particular pediatric torture. I sure hope so.

But you know what's weird? Wednesday and Thursday his neurological symptoms seemed better. Actually, after he returned home from his MRI he seemed better than we'd seen him in a couple of months. (Maybe the anesthesia has unknown magical properties?) The doctor told us he'd be a sleepy couch potato for the rest of the evening. Instead he was chatty and -- for him -- quite lively.

He came down and jumped these flat-footed jumps for his grandma and grandpa. "Don't I jump HIGH?" he demanded.

"Oh, YES." said Grandma and Grandpa. (No, he does not, between you and me.)

So the neuro stuff seemed improved, but yesterday we saw the old restless seeking return, and the profound sadness. Asking asking asking for things he thinks will change his life.

When he asked for a cockatiel I grasped his arm and said, "Stop." I offered him the usual list of things he could do or things he could eat, but he merely dropped his head back on the couch in despair. He stayed like that, despondent, flaccid, glassy-eyed, for a while, until I gave up and made him take his meds, hoping he'd simply go to sleep. Sleep is sometimes our best hope.

He was up another three hours, but with his typical mood lability he recovered his (relative) good spirits after a while.

Today we have a psychiatry appointment -- back to MGH, our new second home -- and that, Readers, is a very good thing.


  1. I feel your pain as we lived a somewhat similar diagnostic scenario seven-ish years ago. I don't know the "nuts and bolts" of the neuro concerns for Benjy, but I don't know what a neurologist can really do with a neuropsych report, unless there is marked regression. And then the neuro would send you for an MRI/other scanning and EEG. Take a breath and remember that one of the best hospitals anywhere might not give you answers... I am so pleased the MRI was normal, Anna. I hope you guys find some peace soon.

    1. Thank you, L! I so appreciate that you are here for us. And i am SOOO glad to hear your recent good news. Made my day! Hugs! xx