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.

Changes, Events, Happenings

Starting the first of January, we were forced to change health insurance providers.  We were moved from an open system to a closed network provider.  This meant that we had to change doctors.  This also meant my son had to change doctors.  It took a few weeks to get "plugged in" to the new network so we continued with the Remeron (45mg) and I arbitrarily decided to tail off the Neurotin (as many as 3 x 600mg).  Neither drug appeared to to much but make my son sleepy.  The Remeron alone accomplished that.  So much of the month was spent listening to my son perseverate.  Nothing much else happened.  He didn't get better and he didn't get worse.  When he finally found himself asleep, I felt respite as well as he did (I assume) for he finally stopped repeating the oft-said phrases.  Usually, the moment he awoke, it all started again.  Sometimes, I overheard him muttering as he drifted off to sleep.

Last week, we met with the new psychiatrist.  After hearing our story and even seeing my son in action (he attacked my wife and then me during the appointment), she decided to try Haldol.  She too believes in the go low and slow approach.  He started at 1mg once a day while keeping the Remeron as is and adding Cogentin because of reaction he had to Abilify.

Haldol, being an old anti-psychotic, fell out of favor because it could compromise liver function.  It is still used but usually teamed with occasional blood tests.  So it is with us.

After the first day on Haldol, my son came home from school quiet and agitated.  He marched into his room and had a tantrum.  His babysitter called me in a panic.  I told her to lock him in his room and let him work it out.  I called the psychiatrist fearful that he was having a reaction to the Haldol similar to what we had seen before with other drugs.  The psychiatrist called the babysitter and got more detail and decided it may just been an unrelated mood thing.

So we kept on.  We started to see slight differences.  He began to speak to us more.  He began to ask if he was sick.  He started to ask some the same old questions of a few months ago. ("Am I going to die?", "Will I have a heart attack?") and some new ones ("Where has Oprah gone?", "I used to ride my bike a lot, didn't I?").

After about 4 days at 1mg, the doctor got back to us to see how things were going and because there was some change, she suggested going to 2 mg.  We have seen my son pick up the phone and talk to people (something he has not done for several months).  We have seen him try to color a little.  He still perseverates.  He is still anxious and depressed.  He still has some OCD-like behaviors but he is more communicative.

We'll have to see where this goes...

A Strange Turn of Events

We had an MRI for my son last week and just got the results.  The neurologist noticed some old brain damage on the left side of my son's brain.  He was quick to state that this was old and likely unrelated to what we are seeing now but that it was unexpected.  He said it explained why my son is left handed and maybe (emphasis on maybe) why he has a low IQ.  He said he needs to think about it some more and will get the entire image CD to review it. Then he wants to see us and my son and maybe test and see if my son ever had a stroke (!) and has any issues obviously related to this damage (motor issues, specifically).  

 

As far as medications go, my son continues to take the 45mg of Remeron at night and 600 mg of Neurontin 3 times a day.  The only thing that seems to be true is that he sleeps at night (although certain major events may disturb that sleep - e.g. going back to school, arrival of my Mother).  Aside from that he continues to perseverate and rarely engage in conversation.  We have had a few violent outbursts (about 3 or 4) over the past few weeks.  In my mind, we have seen no benefit from this regimen of medications - save for the sleeping at night (granted, a great thing - but not the home run we would like to see)

 

So...brain damage..no solution.  Anxiety...no solution.  At best we have some fodder for medical papers but still no sign of my son.

Another Specialist Speaks

The holiday season provided us with a gift.  Owing to a cancellation, our February appointment scheduled back in August with yet another world-renowned expert was moved up to yesterday (Thursday).

Our son was in tip-top form: agitated, upset, violent, non-communicative - a full stage show complete with scratching, pinching and screaming. After he settled down a little, he did say to me "I want to go home". My wife had to take him home after about 20 minutes. My son took no comfort in being at the clinic and apparently was quite upset about the situation (maybe that specific one or his own or both).  I sat with the Doctor and gave him the background, answered his questions and described the situation.

The doctor said that my son's situation was unusual but not unheard of. He shared the following:

1. My son's brain may be in a state of flux right now. This could be somewhat natural changes or perhaps heralding a permanent regression of his capabilities
2. The medications that have specific and well-known effects on "normal" brains have different effects on "spectrum" brains and it is good to use low dosages and slowly raise them. He liked our approach.
3. If my son's brain is undergoing some sort of change then we are treating it using medications when it is in a state of flux and the effect of medications becomes even more unpredictable. If we think my son's condition has stabilized (at awful) then it might be valuable to go back and try the anti-psychotics again - low and slow. He said that in his experience, anti-psychotics of one sort or another are the ultimate solution.
4. He thinks that Neurontin is OK because it is well tolerated but noted that it is mild in it effectiveness. He thinks Depakote might be a better mood stabilizer even though it requires blood monitoring.
5. He thinks higher doses of Klonapin might be helpful (3,4 or 5mg).
6. He thinks the MRI is a good idea if only to rule things out.
7. He thinks genetic testing might be beneficial if only to identify chromosomal or genetic anomalies that might be able to point to a specific treatment regime.

Like some of the others, he was not wholly convinced that the death obsession was the root cause and may have only been the straw that broke the camel's back - meaning this was inevitable anything could have triggered it.

He was nice and thoughtful and did his best not to shrug his shoulders and say "I dunno".  He said he would be willing to confer with our psychiatrist and even see my son on an ongoing basis or every now and then if we thought it would be helpful.

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.

Back to Awful

Well, the Fluvoxamine has done nothing.  OK, it's done nothing good.  My son is back to muttering, gesturing and not responding.  Occasionally, he gets aggressive and attacks.  He is mostly living in his own head.  We are dumping the fluvoxamine, letting is clear out of his system and now we are going to try Cymbalta.  Should I be without hope?  He's so gone, it's hard to remember he was lucid just 10 days ago.  In his special school they are transferring him to a more restrictive environment where most of the kids are basically non-verbal and incapable of learning.  This is the depths to which we have fallen.

When do we give up?  When do we drop him off at a hospital and say "Good Luck!"?

Ridiculous?

I was up for a few hours sitting in the dark in my son's room waiting for him to go to sleep.  He won't stay in bed unless I sit there.  He'll otherwise wake up and turn on the light and mutter to himself and pace.

While I was there I was pondering his situation.  He's been regressing these past few days with no dosage change of the Fluvoxamine (25mg).  He back to being basically non-communicative and perseverating.  I was thinking about upping the dose when it occurred to me that the proper course of action might actually be to reduce the dose.  There is clearly a cumulative effect of the drug as it reaches a steady state in his bloodstream.  We have seen this with other SSRIs and the anti-psychotics.  At the start, there is some basic improvement and then after a couple of weeks - back to crazy.

That got me thinking...maybe he's just really sensitive to these SSRIs and his paradoxical reaction is because of this sensitivity. Maybe the right course of action is to reduce the dosage lower and lower and test the reaction and behavior at these lower bloodstream equilibrium levels.  I think I'm going to try 12.5mg tomorrow...

More Words

Yesterday there were 4 violent outbursts.  Blind rage and anger at the now infamous teaching aide.  I got in his way and was clawed, scratched, kicked, hit and almost bitten.  Each time I wrestled him to his room where his tantrum continued, highlighted by door kicking and shrieks and tearing of paper and notebooks.  I was convinced the Geodon was to blame and wanted to drop it to 0mg (from 20mg).  The Psychiatrist suggested that the withdrawal side effects, even from that low dosage could be problematic.  I agreed to cut it to 10mg (by cutting the capsule in half, tossing the powder from one half and giving the other half to my son).

This morning when he awoke, my son was still muttering and pacing.  He followed instructions as usual to come and eat breakfast.  I sat and watched him in silence.  He looked at me and said "Daddy, your eye is red."  And indeed it was from my rubbing it to disperse some minor irritation.  Never have 5 words excited me so.  The he got up and walked around some more.

He then approached our house guest (who perhaps is owed a blog of her own) and said "I love you" and had a short conversation with her about death.

I looked in his room and saw that he attempted a floor puzzle.  In addition, he seems to be trying to color a little - and keeping in the lines, too.

He's still pacing and muttering (the usual phrases) but there are 4 faint glimmers of hope in a single morning.  Yet the day is long and just now started....

Two Weeks of Low Levels of Geodon

I have requested behavioral logs from the school where they are tracking my son's activities.  This week he had a short period where he did math but otherwise, paced in class, slept in class, muttered endlessly and lashed out aggressively about 4 times. At home, I saw very short glimmers of real interaction but mostly pacing, muttering and a couple of meltdowns.  Yesterday evening was particularly bad and included two situations in which he needed to be confined to his room and when inside he banged on the door and tore up paper, screamed and squealed.  The subject of the anger was the now notorious teacher's aide.

 

WARNING: Amateur Pharmacological Assessment follows

 

He's been on the Geodon for about 2 weeks now.  I worry that although the sedating effect is helpful if the aggressive outbreaks are a result of it reaching some sort of steady state in his bloodstream.  His behaviors are similar to what happened with other anti-psychotics. I also wonder if the glimmers of interaction are a result of the Fluvoxamine.  This is all "gut" feeling-based.  In light of this, though, I wonder if we ought to drop the Geodon and increase the Fluvoxamine to the next dosage level (50mg?)

Done with Geodon

A short experiment that yielded no tangible results except drowsiness.  Valuable in itself but no relief from the constant hum of the dreaded words of the aide.  We have decided to return to the track of treating this like OCD and head down a path paved with fluvoxamine.  Once again, starting with a low dosage (25mg) the first one applied late this afternoon.  We won't know much for 7 days or so, maybe longer.

We do now definitively know, I guess, that anti-psychotics are not helpful.

While out for a walk with my son after dinner, a short 'round the block sort of walk, we ambled while my son muttered the usual secret spell. On the way through the park at the end of our street, my son reached out to me and held my hand.  He did so deliberately and held on, not to steady his gait but just, I believe, to touch me. 

Maybe to let me know he's still here.

Maybe to let me know that he is coming back.

I can always hope, right?

Geodon - Day 5

My son's every waking moment is spent repeating the familiar phrases to himself and pacing. He responds to commands ("Sit at the table.", "Change your clothes.") as long as such commands do not require a verbal response. As best I can tell, the Geodon - like the Seroquel before it - is most useful as a sedative and has done little to break his viciously compact thought-cycle. He slept well the past 2 nights but when he wakes - the very moment he is conscious, in fact - he starts repeating the phrases. He lives out his days locked in his own world where his aide's now infamous words rule and nothing else is allowed in.

This is not materially different from the days when the Prozac level was waning except that now he sleeps.

Why?

As I type this out, my son is in a rage about the words of his teaching aide.  He is marching around his room screaming, grabbing things, jumping and sometimes crying.  Her words, once the rhythm of his perseverations, are now just sounds, distorted by his anger.  "Yoo",  "Choo", "Yoo"....

He got out of his room when I gave him his Geodon (now raised to 30mg) and he marched down to his computer, tried to log on to facebook, to, I believe, rage at his former aide online.  He was unable to focus enough to do that and instead grabbed the laptop and proceeded to bite it in frustration.  "She's not the computer" I said.  "She's not here".  "She's not me!" I said when he grabbed me  "Yoo!"..."Choo!" he continued screaming.  I was able to direct him by pulling him and pushing him back into his room

What has he done in his 15 years on this planet to deserve this torture?

Details - Where the Devil Lives

About a week ago, as we were tailing off the Prozac, my son became obsessed with bathing.  Or maybe just running the water in the bathtub.  While pacing and perseverating, he would march into the bathroom and turn on the water in the tub.  Sometimes, it appears he would forget it was on.  Once, when my wife was here alone and engrossed in some other work, the water ran for what appeared to be several hours until she realized what was going on.  It overflowed the tub and filled the bathroom.  The water seeped below the floor and into the bathroom below it on the lower level.  This resulted in about $2000 in damage which required structure drying and ceiling replacement in the lower level bathroom.

Since then we have been locking him out of his bathroom and either checking frequently to let him use it (under supervision) or asking that he call us. Of course, he has been unable to call for assistance since he only perseverates.  Twice now he was stuck in his room without bathroom access and "pooed".  It appears that he pooed into his hand and then placed the poo on his desk.  He continued to perseverate and pace afterwards leaving smears of poo all over his room and belongings.

The clean up was straightforward but deeply saddening - this is where we have come.

The Geodon has not reduced the perseveration nor the pacing.  Nor has it enabled him to speak except that one time two nights ago.

Yesterday I took him out for a short walk in the neighborhood.  He perseverated the entire time and did not speak otherwise.  What was upsetting to me is that as we walked, about six people stopped and said "Hi" to him.  These are people that I do not know yet they know him.  He was a sort of neighborhood celebrity, it appears - now reduced to the mindless and endless repetition of phrases a teaching aide told him 8 months ago in an effort to comfort him.

Geodon - More Nothing?

I know it takes time and he's only been on it for 2 days but here's what we're seeing. He gets the Geodon with a meal (as directed). About 3 hours later he falls asleep for about 4 hours. He then gets up again and stays up. When he's awake he perseverates and usually paces non-stop. He responds to commands but does not converse. Briefly, this morning, at about 3am, he was lucid and conversant. It lasted about 30 minutes. He could say who I was (Daddy) and his age (15) with a rapid response. (These are questions he does not respond to when in perseveration mode) We talked about the importance of sleep and a little about his new school. He had some milk in glass which he poured himself. He took a bath and dried himself off. These last 2 items were things he was incapable of doing when perseverating but, of course, quite capable of doing before all this started 9 months ago. He also talked about death. He's now back to perseverating and pacing.

Now with...Geodon!

The Prozac is gone and my son is now walking around talking to himself with no interaction with the outside world.  He responds to some barked commands but his brain function is concentrated on repeating the phrases of the now notorious teaching aide.  He is no longer upset or angry about thiose words or at least he is not acting out upon any such thoughts that might persist.

Yesterday night he started Geodon.  It's a low dose (20mg).  The lowest - which is probably the way to go with these drugs.  As usual, I did a large number of internet searches to learn more about this medication.  As usual, the postings were wide-ranging (miracle drug to amplified all the negatives) and mostly unhelpful.  A lot of doctors start their patients with huge doses of this drug.  From my experience that always seems like a bad idea.  Makes me wonder about the wisdom of these doctors. As best I can tell, though,  Geodon is a powerful anti-psychotic.  It seems to have a mile long list of caveats.  Take with food...a lot of food.  Take one hour before bed.  Watch for any changes in the patient.  While most often used for bipolar disorders, there is a wide variety of off label uses - depression, anxiety, OCD.  It looks like it's another adventure waiting to happen for us, though.  The immediate effect of the drug was to knock my son out after about 3 hours.  He slept most of the night.  It appears that he woke up at some point, tried to do some sort of activity (word searches, I think) and then went back to bed.

This morning he was pretty much the same as yesterday - except that he slept.  When he woke, he immediately started talking to himself again.  While waiting for the bus, he stopped perseverating a couple of times to watch some of the neighborhood kids ride by on their bikes.  When they passed, he got back to work.

While I have always found watching my son in his variety of awful states painful and upsetting, today I started feeling sorry for myself, too. 

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?

Upping Prozac

The new strategy was to raise the dosage of Prozac to a level that has shown success in dealing with obsessive compulsive tendencies.  Seemed like a good strategy.  So we started off down that new path.  We knew that the effect of any new dosage level would take about 10 days to reveal itself.  As always, we remained hopeful.

Sure enough within 10 days - pretty much as expected - we saw the new outcome.  And it wasn't pretty.  The behavior showed distinct similarities to those of my son's reactions while on the anti-psychotics.  The total self-involvement, the persiverating, the sleeplessness.  So we brought the level back down.  While the behaviors subsided somewhat they did not return to even the manageable level of madness previously experienced.

New and exciting obsessions started, constant bathing, for instance.  Constant clothes changing. 

It was therefore decided to get off the Prozac entirely.  And so another set of bottles of various dosages of a drugs goes into storage.

That basically brings us to now.  We are letting the Prozac go, waiting for it to subside in the bloodstream.  The plan is to switch to Fluvoxamine - a drug more typically associated with treatment of OCD and depression but specifically OCD.

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.