Time Has Passed

A lot of time.  My son's stay in the hospital may have been helpful for him.  Maybe it was most helpful for us.  He was in for about 10 days.  It was far from home (about 90 minutes driving, in traffic).  He definitely hit bottom some time around his stay. 

During visiting hours once, a new child was admitted.  As all patients do, he arrived restrained on a stretcher.  Once inside the secure facility, he was released and made his way to the common room where he awaited intake.  He sat quietly and ate a snack.  My son approached him and asked the equivalent of  "What are you in for?"  The boy said, "Attempted suicide".  My son didn't understand the word "suicide" and the non-comprehension registered on his face.  The boy then reworded his response. "I tried to kill myself."  My son was obviously confused and flustered by such a response - after all he wanted to live forever!  He said, with obvious mental clarity and confusion "What did you try to do that for?!?!?!"  The boy was taken aback.  He thought a little and said, meekly, "I had a bad day."  My son thought a little about that and said, "I hope you have a better day, tomorrow."

When my son came home, he was stable.  Still a little on edge and sometimes still violent.  He was on Risperdal, Remeron and Wellbutrin.  We had Benadryl available.  He started out at his old school for a couple of weeks while we located a new placement.  The new placement was a life skills facility where each student had a one-on-one aide.  No academics, some vocational work.  Lots of behavioral support.  Maybe the best placement given that his behavior stood in the way of any progress on any front.

Whether it was the passage of time, the behavioral support, the new drugs, the new placement or all of those things...or something else entirely, slowly but surely my son began to "come back".  He re-engaged with life as he lived it before.  He began speaking, riding his bike, conversing with neighbors, spending too much time on facebook, doing little self-motivated community service projects and grooming.  He started talking on the phone, re-engaging in social activities and Tae-Kwan-Do. He showers, again, toilets and cares about his hygiene. We have tapered off the Remeron and then the Risperdal.  The behavioral specialist who were engaged to get him to control the violent outbursts saw that behavior maybe for three weeks.  Now they are focused on such mild behavioral issues such as "reading with correct vocal inflection".

We started ramping up the Concerta again to see if we get better impulse control or attention.  We are back to worrying about his social disabilities and his lack of a close friend.

I still sometimes see mannerisms or gestures or hear words that trigger my fears of a slide back into the abyss but these appear to be fleeting, random actions and not indications of regression.  Knock on wood.

Now I have a lot of time to reflect on the 18 month "dark period".  What is most difficult for me is my wife's family's reaction.  My mother visited us twice, my sister 3 times.  While my mother was not really helpful, and was mostly upset, her presence was extremely supportive.  My sister who has a background in special education came with boxes of tricks - that were mostly useless - but she came and tried.  That was good. 

My wife's family, on the other hand, who always talk about the strength and enduring nature of familial bonds and the value of family, basically abandoned us.  Her mother stopped visiting us.  None of her brothers or sisters offered any assistance.  No uncles. No aunts.  When her mother called, the last thing she wanted to hear about was her grandson. I am angry about that.  I didn't really notice or care until now - that I can reflect on it.

Hospital

The facility is an adolescent unit.  It seems to be primarily servicing teenage girls likely with eating disorders.  My son is one of a couple of boys.  The patients are easily identifiable owing to their lack of shoes.  Two reasons for that - to prevent fleeing and because of shoelaces (get it?).

The presence of girls is irrelevant to my son as he is quite wrapped up in his own situation.  He has been hospitalized for about 5 days so far.  The first 3 were more or less uneventful.  He was pretty well-behaved.  He sounded a little over medicated as they were feeding him a lot of Haldol.  Much more than he was getting before.  They decided to switch to Navane and that seemed to go OK.

During one visit my wife off-handedly indicated that my son was likely to be home by the end of the week.  That appeared to give him ideas and he seemed to decide that if he really misbehaved he would get home even sooner.  Of course, that logic only makes sense to him.  But the net result was an 18 hour period during which he attempted to flee, attacked staff and other patients and acted out in many ways.  He was restrained and put in isolation.  They don't mess around there.  He was given more Navane, benadryl and Adavan all in an effort to calm him.

We spoke with him and made clear that he would be there as long as needed.  That we did not know when he would be released.  That it was all up to him and his behavior.  Maybe that helped, maybe not.

He was back to being somewhat calmer next time we visited.  Now they are thinking about trying Risperdol again.  I'm thinking if they want to experiment then that's the place to do it.  They are also looking into non-stimulant-based ADHD drugs.

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.