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.

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.

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!"?

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....

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?

A Faint Glimmer

This morning was similar to most others.  My son was still asleep at 7AM.  His room lights were on suggesting he was up part of the night.  When I went into his room to rouse him, I tickled him to get him moving as has been our custom for all these years.  This time rather than get annoyed (as has been his most recent custom, these past few months) he laughed.  He laughed.  But then he got annoyed but at least he laughed.

The rest of the morning followed the usual trajectory as he remained lethargic and uninterested.  I coached him into dressing.  I marched him into the kitchen to eat.  He asked me about death.  I told him that I only talk about matters to do with living.  He ate a little.  Tried to go back to sleep.  I let him sleep for a bit and then marched him outside to wait for his bus to school - hoping the chill of the morning air might rouse him.

It had little effect but I kept him by the door as we waited.  The bus was late and I began to worry.  Then I realized that I didn't have the contact information for the new transportation company.  I left him by the front door as I searched hopefully for some sort of memo or note about the new transport arrangement.  He was slumped in the doorway, sort of sleeping, occasionally muttering about not enjoying life or fearing death.

Then I heard "Bye, Daddy".  I ran to the front door, the bus was there, my son was marching to it, the driver was apologizing for being late. 

"Bye, Daddy"

I haven't heard that for weeks.  He used to wait by himself for the bus or ride his bike.  He would take off and say "Bye, Daddy" while I was busy tending to other menial chores.

"Bye, Daddy"

Is it wrong to be hopeful?  Is it wrong to see that as a step in the right direction?  Am I setting myself up for some grand disappointment?

Probably.