Second Opinion, Third Opinion...

Motivated by desperation, we sought out additional opinions.  First let me just say that doctors are quite similar to building contractors or software engineers.  Show them someone else's work and they'll say, "Well, I suppose that's one way to do it...but I would do it this other way..."

We visited another psychiatrist.  That's pretty much what we got from him.  I would have used this other anti-depressant; I would have used this other anti-psychotic.  He seemed to want to emphasize the use of an anti-psychotic.  Further he suggested that the dosages used thus far were not high enough.  He suggested that we switch from Abilify to Seroquel.  The choice was driven mostly because of the sedating effect of Seroquel as my son wasn't sleeping all that well.  He suggested starting at 50mg and ramping up by 50mg every 3-5 days and reporting progress.  It all seemed reasonable seeing as the Abilify seemed to produce little except alarming muscle spasms.  So we started off on the Seroquel path.  The sedating effect was a helpful respite certainly to us and, I believe, to my son, as well.  He slept a few consecutive hours a night rather than in fits and starts.  I wasn't yet sure if there was any behavioral differences.

During the Seroquel ramp-up, we also visited a pediatric neurologist.  This was driven by a well-meaning remark by a psychologist that our son may have "brain lesions".  Certainly a frightening sounding possibility.  It turns out to mean very little and suggest nothing in terms of treatment.  The neurologist listened to our story and watched my son and mostly suggested that he could prescribe medication - like a psychiatrist.  He said any of the three tests he could perform would likely yield little useful information.  We got the same message regarding the medication as we did from the second psychiatrist -  I would have used this other anti-depressant; I would have used this other anti-psychotic.  But he also believed the dosages used thus far were not high enough.

So we kept along the Seroquel path.  Apparently, it is usual to reach a level where the sedating effect is overwhelming and that's how you know to back off.  In our case, after a couple of weeks, long before seeing our son sleep away his days, we reached a level where my son started behaving psychotically - much as he did with Risperdal.  So we backed off.  It took a few weeks to get back to where my son was not behaving psychotically.  This seems to go back to the slow metabolism where my son's system seems to extend all drugs' half-lives to the maximum.

Three anti-psychotics and three psychotic reactions.  We decided to drop anti-psychotics.  I began to wonder if this meant that my son wasn't actually psychotic.  Our first psychiatrist suggested that this might be the case.  In the meantime, we added a new collection of bottles of drugs to ever increasing cache of pysho-pharmacology.

His thesis, which I stated once before, was that my son's obsessive tendencies had been amplified by the shock and finality of death and also focused the obsession on death itself.  He thought we ought to treat this more as a problem of OCD than a psychosis.

Anti Psychotic...Pro Psychotic?

The issue seemed to be non responsive to anti-depressants.  It was decided that amplifying the effect of the anti-depressants using a small dosage of anti-psychotics was worth a shot.  Since my son was often viewed as being "on the autistic spectrum", the anti-psychotic of choice was something known as Risperdal.  Nothing to lose...let's give it a shot.  We already have learned that my son is a slow metabolizer of drugs so we would have to wait a while to check the effectiveness of the treatment.  Or so we thought.

He took the first dose.  It was low.  And within a couple of hours, he was squatting in front of the mirror in his room, staring at himself, muttering quietly.  He would not move.  He would not respond to questions or attempts at conversation. He just stared and muttered.  We tried it for two more days.  But clearly it was making my son psychotic in a manner heretofore unseen. I arbitrarily decided that he wasn't going to take it anymore.  It took about 3 days to work its way out of his system.  Then he returned to "normal".  Not the old normal, of course.  The new "obsessed-with-death" normal but at least he was back.

After that disaster, we decided to try Abilify.  Again, we started with a low dose.  It seemed pretty much uneventful and then after about 5 days, my son started having involuntary muscle spasms.  His head kept drifting to the left and then getting "stuck".  He couldn't straighten it.  Or when he did, it would slowly drift back.  He would also stick out his tongue - also, seemingly involuntarily - in a sort of snake/Michael Jordan manner.  A frantic call to the psychiatrist, resulted in an over-the-phone diagnosis of a drug side effect called tardive dyskinesia that could be treated with a shot of Benadryl.  This side-effect was not unheard of but not so usual. 

Once we got to the emergency room, they confirmed the diagnosis.  We were there for about 6 hours while they waited for the Benadryl to take effect and make certain that everything was OK.  My son took advantage of this situation to ask every medical person who assisted him whether they thought he was a candidate for a heart attack.  He also let them know he was unhappy with his current depressed state and wanted to get better.  He solicited their recommendations which were similar to those he had heard before (eat well, exercise, do good work - or a subtle variant thereof).  He was charming and sweet, as he usually is when he is not obsessing, and even hugged the ER doctor as a gesture of thanks for resolving the spasms.  I was hopeful that the advice would be taken to heart but I knew it would likely soon be forgotten. (and, of course, it was).

We decided to continue the Abilify but now included a drug to counter the muscle spasms.  Our psychiatrist urged us to solicit additional opinions so we did.