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.

More of the Same but Different

The initial period after Haldol resulted in greatly increased engagement.  My son spoke more and was more lucid.  The doctor realized that Haldol was limiting in the the types of anti-depressants that might be used so she decided to taper off the Haldol and switch him to Perphenazine.  His initial reaction to Perphenazine seems to be violent aggression.  He was out of control, attacking others and being oppositional.  Since this was his initial reaction to Haldol as well we kept going.  The dosage was increased and the aggressiveness continued unabated.

After a couple of weeks, we switched back to only Haldol.  In this period his school decided he was unmanageable and was building the case for placing him elsewhere.  At home things were unsettled as well as he decided that attacking his mother was acceptable behavior.  He would not attack me and he would not attack my wife when I was present.  This meant that when I was at work I was on edge constantly fearing that my wife would be hurt or driven to the edge.

An emergency trip to the psychiatrists office led to such a high level of aggression towards my wife and the staff that the police were called.  The psychiatrist suggested that my son be taken the emergency room.  The police were not allowed to take him to the local hospital (about a block away) and could only transport him to the county psychiatric emergency facility.

He stayed there about 8 hours until the attending psychiatrist could see him.  When the psychiatrist did see him, he was unhelpful.  But he held my son overnight.

The facility was not new and had the look of a bunker from the outside.  Visiting my son was allowed in a doubly-locked private area not unlike a prison visiting room.  Staff were in attendance at all times.  My son was scared and upset.

After an overnight stay, we were duped into taking him home.  Duped because apparently if you leave the emergency room, the search for placement is halted.  They wanted him out because he was needy, bored and lonely and required a full-time attendant and they were going into the week-end with a skeletal staff.

We found out about this con after we brought him home.  We decided to try the weekend at home.  The results were basically unchanged.  He was sort of manageable but would go after my wife unprovoked.  On Monday I had to work late and the evening was eventful as my wife fought off unprovoked aggression from my son.  She eventually wrestled him into his room were he remained until I returned.

The evening was peaceful but tense as my wife was upset and nervous around him.  Sensing this, he was on his best behavior and was sweet and helpful.  This was the usual post-aggression behavior.

In the morning, he got in the bus to go to school and moments after he left a phone call from the driver indicated that my son had undone his seat belt and lunged at the driver.  I told the driver to bring my son home and I took my son to the local emergency room.

We stayed there about 14 hours until a placement was found in an adolescent psychiatric unit about 50 miles from our home.  The entire 14 hours was trying because my son wanted to go home, wanted to walk around, was bored and finally when the ambulance came to transport him - was afraid that he was never coming back. We were not allowed to accompany him during the transfer.

Nothing Much

Been on Neurontin at 200mg twice a day and Remeron 30mg once a day for a couple of weeks but still not much of anything.  The perseverations continue unabated.  It seems that we can get my son to act aggressively by trying to get him to stop perseverating or to get him to try to do things he should already be doing himself (like, say, wash his face).  My guess, is that the aggression is a manifestation of the anger at being unable to do those things.  The sedating effect is still in play so at least he sleeps.  The anxiety symptoms now include getting naked and constant changing of clothes, though.

We have just today boosted the Remeron to 45mg and will shortly boost the Neurontin to 300mg twice a day.  And then, when that doesn't make any difference, I don't know what we try.

More Aggression

We're starting to see a little more agression.  He attacked Mom at a school meeting today as he paced about the room while she explained his situation.  He grabbed a book and smacked her on the head.  I think that this might have been a response to her descriptions of his current state and how he didn't like it.  It could have been random, too, but somehow that seems unlikely.

Interestingly, he started 200mg of Neurontin the evening before.  I am wondering if he is showing more aggression as he starts thinking more clearly and being more upset about his situation.  That is what one might call an overly optimistic take on a depressing situation.

He supposed to take 100mg/200mg Neurontin (morning/evening) for 3 days and then switch to 200mg/200mg.  We are supposed to keep the Remeron at 30mg per day.

Remeron & Neurontin

An eventful week.  On Wednesday my son hit his teacher and was expelled from school.  This, of course, is the special special ed. school that is supposed to be able to deal with him in his basically non-functional state.  So he's stuck at home until Monday. The psychiatrist suggested we start the Neurontin and keep up with the Remeron.

So he's still taking the 30mg or Remeron (once a day) and the 100mg of Neurontin (Gabapentin) twice a day. He seems marginally more at ease but he still paces, wanders and talks to himself ceaselessly. He hasn't been aggressive to us but that is not really predictable. It could happen anytime. He has started to do things like look at workbooks (math, reading, etc), try to sit down and color and wear old clothes that don't fit him. He has no ability to focus on any of these attempted activities but I think he's using them to try to get back in touch with "his old self".

The most obvious effect we see from the medication (the Remeron, I guess) is that he sleeps at night. It is not clear to us we are seeing anything else as a direct effect. It might be the case that his attempt at activities is a hopeful sign and a result of the medications but it's hard to tell.

Curious Event ending in Heartbreak

Yesterday my son woke up and was basically lucid.  He was a little low energy but was conversational and engaged.  He went to the orthodontist, had a 50 minute procedure and was cooperative and even happy.  He spent the day doing some chores that he would usually do like feeding the cat, cleaning up after himself, going to the grocery store.  He was on facebook for a while.  He cleaned up his room and put things back in order that he had thrown or discarded in anger over the past few months.  There used to be a lego phone in his room that I had to remove because he smashed it during a tantrum in which he said he was going to call the "notorious teaching aide" and tell her that she's stupid.  While cleaning up his room yesterday, he asked me where the phone was.  I said that I put it away because he was smashing it up.  He said that had no memory of doing that.  He asked that I put it back.  He went to sleep by himself yesterday evening and slept most of the night

 

When he got up this morning, he told me it was too early.  Then he switched over to  talking to himself, pacing and being non-communicative.  One good day.  That's all we have.  I put the lego phone back into hiding.

 

He's been getting the 37.5 mg of Effexor morning and evening.

Restless, Violence then Calm then Babbling

Last night was another night of irritability, aggression and anger.  A frantic call to the doctor led to the conclusion to skip ahead to Effexor twice a day (37.5mg) (usually it is once a day for a week, first).  There was squealing, banging, nakedness and grabbing most of the evening and parts of the night. Literature indicates that Effexor takes about a month to reveal itself as helpful or unhelpful.

He got to sleep in this morning because of an orthodontist appointment.  When he woke up he was communicative and engaged.  He spoke to a neighbor, fed the cat and had a little breakfast even cleaning up after himself.  His orthodontist appointment was quite normal.  He spoke and asked questions.

When we got home, he was OK but began to start muttering and gesticulating after about an hour.  He then tried to take a nap.  I had to go to work but suspect that the degradation has continued.

We see the childhood psychiatric medication specialist on Tuesday.  The likelihood of a miracle is quite small.

Out with Fluvoxamine

We've been tailing off Fluvoxamine and instead we will switch to Effexor.  Looks like the "black box" warning on Cymbalta has led to this reconsideration.  My understanding is that Effexor is like the electro-shock therapy drug.  The last great hope, as it were.  If this does nothing, I don't know what we do.  As usual, whilst tailing off Fluvoxamine, we saw a little bit of lucidity. My son slept restlessly all last night and then at 6am fell asleep for real and woke up around 3pm.  When he arose, we got some conversation and interaction from him. He did a few normal independent person things (ate, made some Quik, colored a bit) but after a couple of hours headed back to muttering and incoherence including screaming and aggressiveness. By my calculations he has between 33% and 10% of the dosage level of Fluvoxamine in his bloodstream.  We'll start the Effexor tomorrow.  37.5mg.

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?)

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?

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.