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.

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.