Steady - That's About It

We've been at 45mg of Remeron and 300mg of Neurontin twice a day and things are pretty much the same.  A few words every few days.  Little else.  Still anxious and agitated.  No real conversation or communication.  Still perseverating.

I'm thinking about 2 things. 

1. Going back to check if very low doses of things we have already tried can help.  Specifically Prozac, Seroquel, Effexor and Geodon saw short periods of "awakening" as we either tailed off or built up.
2. Schedule an MRI.  I mean why not?  If there are structural problems in his brain there's nothing we'll be able to do but, I suppose, at least we'll know.

Stable at Awful

We kept our son home from school on Monday because he was aggressive and non-functional. He was having tantrums and screaming and hitting.  I sustained some bruising and scratches in one of his blinded-by-rage attacks.  His anger was towards that teaching aide who told him of mortality.  The teaching aide spoke to him about this several months ago but in his drug-free state it became a target of obsession.

In an effort to relax him (Sunday at 4am), I gave him a very low dosage (25mg) of Seroquel (an anti-psychotic we had in our substantial collection of pharmacological paraphernalia) mostly to get its side effect (sleepiness). It helped him sleep. I told our psychiatrist what I did, expecting a stern rebuke.  He said it was the right thing to do and said to continue (I'm putting up my "Doctor" shingle, right now)

My son is now very passive and not having tantrums or acting aggressively towards others or his things or himself. He is back at school but not engaged.  The Seroquel is no longer assisting in his sleep as far as I can tell. He is mostly awake all night, pacing and talking to himself. No screaming, no hitting. During the day he talks to himself. His talk consists of repeating the phrases his aide told him over and over again but without the angry outbursts.  So the Seroquel has taken the anger out of his obsessive perseveration but has not broken that habit. He responds to commands but will not engage in conversation. He hasn't broken his obsessive patter for several days to initiate any conversation.

We are in a bad place.  The good news is that things are not getting worse.

On The Downside

We are now working our way down to near trace amounts of Prozac in my son's bloodstream.  I have noticed something that is emerging as a pattern of sorts.  When we ramped down the Seroquel and, now, that we are ramping down the Prozac, as we approach very low levels - very very low levels,, my son seems a little brighter.  Still obsessing, but brighter.  He can converse, sometimes, even about new and different topics.  He behaves more predictably.  He carries himself a little bit better.  He can focus a little more.  He's not back to the old way.  But the fog has lifted a wee tiny bit.

The odd thing is that this happens "on the way down", as the drug is eliminated, but not "on the way up" as the drug is introduced.  I also recall seeing it with Seroquel and now Prozac but not the others. I wonder if this means that we don't (or didn't) give these drugs enough time as we ramped up or if we started too high a dosage or if there is some other pharmacological mechanism at play.

I do recall, though, that in my frustration at my son's sleepless nights, at one point, I gave him 25mg of Seroquel (half the dose he started on - when he was on it).  All that did for him was make him sleepy but seemingly had no other effect.  Maybe that was too high?

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.