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 He is still withdrawn and mostly disinterested in anything beyond perseverating.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

Three Pretty Good Days and then Back to Crap

We experienced three pretty good days Wed, Thu and Fri in which my son was lucid and conversational and engaged.  He woke up Saturday muttering, pacing and non-responsive.  Same today. This certainly sucks.  We have a couple of aggressive and violent outburst but mostly he sleeps when he's not pacing and muttering.

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.

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...

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?)