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...

Sadness

I may have never experienced quite so deep a sadness as I am today. 

Today is my son's 16th birthday.  We are coming on a year of devastatingly reduced capacity and engagement.  It has been a year punctuated by trials of tens of medications, reducing his freedoms, limiting his travels, shrinking his world and generally taking his life away little by  little.  There have been bathroom accidents, violent outbursts and unprovoked attacks, limited or no conversation, no engagement and limited hygiene.  We're having his braces removed because he stopped brushing his teeth.  We have given him a "medic alert" bracelet because he wanders and does not speak.  He's having an MRI because we don't know what else to do.

One year.

Wasted.

Lost.

I am tired of this and I want him back as he was. Now.  What has he done to deserve this torture?

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.

Six Days of Remeron

We've seen sleepy but that's about it from Remeron so far at 15mg.  We'll be upping the dosage and seeing what happens.  So far my son has been pretty much the same.  On the positive side, he has made some efforts at self-care, trying to microwave some soup for himself, taking a little more care in toileting.  On the negative side, he was extremely aggressive today, doing a lot of attacking and squealing, throwing and banging.  Still completely non-communicative, pacing and perseverating although still responding to verbal commands that require no verbal response.

Next Up: Remeron

We decided that Effexor was not being helpful so we switched to Remeron a couple of days ago.  It was hoped that its sedating effect would be beneficial and allow my son to sleep at night.  So we start - 15mg - once at night while tailing off on the Effexor.

Day 1 (37.5mg Effexor in the AM) My son slept relatively well a couple of hours after having his Remeron dosage. He woke up around 6am.

Day 2 (0mg Effexor in the AM) My son slept relatively well a couple of hours after having his Remeron dosage. He was awoken by me at 7am to go to school.

Day 3 (0mg Effexor in the AM) My son is still awake 3 hours after his Remeron dosage and seems pretty alert.  Seems like its going to be a long night for him.

His behavior all days has been pretty much the same. Constant talking to himself (the usual phrases repeated - now in a short form "I know...it's been like that...relax...I'm scared..." and steady pacing. He seems to have a need for removing his clothes when he's at home. He eats well and still quite messily. There is still no conversation but he still responds to verbal commands.

Two Weeks

My son has been on Effexor (2x37.5mg) for about 2 weeks. There is some difference in his behavior but it is slight at best. He sleeps more consistently at night (perhaps too much on weekends) but still not quite all through the night. This is the most most noticeable change. He is still withdrawn and mostly disinterested in anything beyond perseverating. He still has no interest in personal hygiene. He is calmer and attacked only once this week - today in fact and perhaps this was related to sleeping until about 2pm and so missing his morning dose. He is disengaged at school and at home paces and perseverates ceaselessly. He said a handful of words not related to his perseverations in the past week. He spoke to my mother on the phone, said he loved her and told her something else we couldn't decipher (we think it was about death).

Besides somewhat better sleep habits and a calmer disposition, I do not see that Effexor is bringing back my son as he was. It seems to simply be sedating the one we have.

Meeting with a Specialist

My son was in a state (as he has been for the past several days) in which he paced and perseverated endlessly.  The perfect to meet up with a specialist. Full on detached mode, as it were.  At the appointment, attempts were made to converse with my son but with no success.  So we spoke about the situation and I shared my observations.  He pondered my son and was puzzled.  He has seen this sort of behavior before - it's just that he never has seen it develop suddenly. Rather, kids who behave like this have always behaved like this.  The most significant takeaway was that my son was in a state of high anxiety and that was, in his mind, the prevailing and overarching issue.  He said the approach taken thus far was reasonable and what he would have suggested but now is the time to "fish in a different pond" - pharmacologically.  He thinks the SNRI medication is a good place to be although he seemed to prefer Cymbalta to Effexor and was bemused at the pharmacist's reaction to it. 

Although he said he needs to think about the sequence and priority, he suggested the following:

1. Increasing Effexor to at least 150mg/day before abandoning it

2. Trying Remeron

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.

Heading to a Dead End?

My son had a sort of rough weekend.  He was mostly non-communicative and often aggressive as we tailed off the Fluvoxamine.  He slept little Saturday night and eventually really fell asleep around 6am.  He awoke at about 2pm on Sunday and was quite lucid and conversational.  He helped himself to food and cleaned up after himself and went on facebook for a while.  This lucidity lasted for a few hours and towards evening, he then regressed to being non-conversational.  He had a few moments of lucidity during the evening and one moment of serious aggression.  He slept OK. 

 

When he woke up, (well, when I woke him up), he was again mostly non-communicative.

 

Because of his late start yesterday, I didn't start him on the Effexor until this morning.  I read on the web that this drug is the chemical equivalent of electroshock therapy and that it is a drug of last resort.  That last bit has me worried.   

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.

Circles

A few days of progress and then a few days of regress.   It's positively maddening.  He's off the Geodon.  It must be completely gone.  He was quite communicative all week although quite focused on death. He got a little oppositional at school but there was some learning going on. Not a lot but some.

He's still on 25mg of Fluvoxamine.  On Friday he started getting quiet and muttering.  When he spoke he said some insightful things like "I have been wasting my life".  I tried to build on that and explain how to move on from that and not waste his life anymore.  He's not ready to receive that yet.

There was at least one evening filled with anger toward the dreaded aide. This resulted in the destruction of an old portable keyboard device (He had this to help him compose before he had a laptop). It also resulted in many scuffs and scratches in his door.

He attacked me once but not with the vigor of days gone by and without any resulting bruises or scratches.  He was also consolable.

Last night he was awake all night talking to himself about "the aide".  He slept briefly in the morning.  He ate a bit and is now sleeping soundly.

So...what now?  What happens the rest of the week?

And guess what, I think our other cat is sick.

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?)

Fluvoxamine

Third day on Fluvoxamine.  It's too soon to say anything. 

Yesterday was an awful day at school, a lot of acting out and aggressive behavior.  His mother, who is out of town, coaxed a few words out of him on the phone.  They were "I'm sad" and when asked why, he responded that "I'm afraid to die."  The bright side is that is was the closest to a conversation he's had in the last 5 days.

Otherwise, I'm still hearing the words of the infamous teaching aide emanating from my son's mouth.  Yesterday I started telling him that I don't need to hear any more of the words of the aide.  I need to hear his words.  I said that I knew what she said made him angry and that he thought she was wrong and stupid.  I reiterated that I need to hear from him now.  Not her.  I spent about 15 minutes on that bender.  Every time he said one of her phrases I said those were her words not his and that I needed to hear his words.  I said that he was my was son and not she.  He eventually fell asleep.

When he awoke in the morning he was drowsy, although as far as I could tell he slept all night.  He was mostly quiet but soon started in on the "aide phrases".  I reminded him that I didn't need to hear those anymore - I needed to hear his words.  Then he just said them in a lower voice.

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?