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.

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.

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.

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?

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. 

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.

Meltdown

It's been about 8 days with no Prozac.  While generally things have seemed pretty good, tonight was as near a nightmare as I have experienced.  During the day, my son was lethargic and uninterested.  He slept pretty much the whole day.  Ate a lot when he was up.  Asked a lot of questions about death.  I got him to leave the house with me for some errand running for a couple of hours but that was as engaged as I could get him.

It seems though that there's something about nighttime that emphasizes the awful.  He started having tantrums.  Loud, near violent ones.  He was throwing pillows and hitting the walls. He broke a lampshade.  When I got near he would grab me and grip my arms or legs and squeeze. I was able to shake him off (but not calm him). I couldn't get him to answer why he was so upset.  I couldn't even get him to acknowledge that I had asked a question.  He was going on about how he was mad at some teacher who told him that everyone was mortal and going to die (about 8 months ago).

I had to lock him in his room.  He is calm right now but I feel like he could explode at any moment.  At some point, he will fall asleep.  I hope.

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.

Upping Prozac

The new strategy was to raise the dosage of Prozac to a level that has shown success in dealing with obsessive compulsive tendencies.  Seemed like a good strategy.  So we started off down that new path.  We knew that the effect of any new dosage level would take about 10 days to reveal itself.  As always, we remained hopeful.

Sure enough within 10 days - pretty much as expected - we saw the new outcome.  And it wasn't pretty.  The behavior showed distinct similarities to those of my son's reactions while on the anti-psychotics.  The total self-involvement, the persiverating, the sleeplessness.  So we brought the level back down.  While the behaviors subsided somewhat they did not return to even the manageable level of madness previously experienced.

New and exciting obsessions started, constant bathing, for instance.  Constant clothes changing. 

It was therefore decided to get off the Prozac entirely.  And so another set of bottles of various dosages of a drugs goes into storage.

That basically brings us to now.  We are letting the Prozac go, waiting for it to subside in the bloodstream.  The plan is to switch to Fluvoxamine - a drug more typically associated with treatment of OCD and depression but specifically OCD.

Second Opinion, Third Opinion...

Motivated by desperation, we sought out additional opinions.  First let me just say that doctors are quite similar to building contractors or software engineers.  Show them someone else's work and they'll say, "Well, I suppose that's one way to do it...but I would do it this other way..."

We visited another psychiatrist.  That's pretty much what we got from him.  I would have used this other anti-depressant; I would have used this other anti-psychotic.  He seemed to want to emphasize the use of an anti-psychotic.  Further he suggested that the dosages used thus far were not high enough.  He suggested that we switch from Abilify to Seroquel.  The choice was driven mostly because of the sedating effect of Seroquel as my son wasn't sleeping all that well.  He suggested starting at 50mg and ramping up by 50mg every 3-5 days and reporting progress.  It all seemed reasonable seeing as the Abilify seemed to produce little except alarming muscle spasms.  So we started off on the Seroquel path.  The sedating effect was a helpful respite certainly to us and, I believe, to my son, as well.  He slept a few consecutive hours a night rather than in fits and starts.  I wasn't yet sure if there was any behavioral differences.

During the Seroquel ramp-up, we also visited a pediatric neurologist.  This was driven by a well-meaning remark by a psychologist that our son may have "brain lesions".  Certainly a frightening sounding possibility.  It turns out to mean very little and suggest nothing in terms of treatment.  The neurologist listened to our story and watched my son and mostly suggested that he could prescribe medication - like a psychiatrist.  He said any of the three tests he could perform would likely yield little useful information.  We got the same message regarding the medication as we did from the second psychiatrist -  I would have used this other anti-depressant; I would have used this other anti-psychotic.  But he also believed the dosages used thus far were not high enough.

So we kept along the Seroquel path.  Apparently, it is usual to reach a level where the sedating effect is overwhelming and that's how you know to back off.  In our case, after a couple of weeks, long before seeing our son sleep away his days, we reached a level where my son started behaving psychotically - much as he did with Risperdal.  So we backed off.  It took a few weeks to get back to where my son was not behaving psychotically.  This seems to go back to the slow metabolism where my son's system seems to extend all drugs' half-lives to the maximum.

Three anti-psychotics and three psychotic reactions.  We decided to drop anti-psychotics.  I began to wonder if this meant that my son wasn't actually psychotic.  Our first psychiatrist suggested that this might be the case.  In the meantime, we added a new collection of bottles of drugs to ever increasing cache of pysho-pharmacology.

His thesis, which I stated once before, was that my son's obsessive tendencies had been amplified by the shock and finality of death and also focused the obsession on death itself.  He thought we ought to treat this more as a problem of OCD than a psychosis.

Fears & Thoughts About Death - Clarified

In a recent moment of clarify, my son was able to enunciate and itemize his fears and thoughts in a very specific manner:

1. He is afraid of dying and does not want to die.  He wants to live forever.
2. He is afraid of dying because he does not want to go to Heaven.  He doesn't like Heaven and doesn't think it's a good place.
3. He is afraid of dying because he doesn't want to be alone.  Specifically, he does not want to be buried and left all by himself in a cemetery.

Because of the concrete nature of his thought process, the specifics of the concerns cannot be addressed philosphically.  Answers must be black or white and irrefutable.  I have tried these answers with limited or no success:

1. You can live as long as you want - you just have to take care of yourself.  That's what the Ray Kurzweil book is all about.
2. If you live as long as you want, you don't need to worry about heaven.
3. If you live as long as you want, you'll never be alone.

Prozac, Not Really Listening

When we learned that Zoloft was not having any helpful effect, it was decided to switch over to Prozac.  Prozac is well documented in the literature in its use on teenagers.  It also has more "headroom' than Zoloft on that larger doses can be given.
The switch involved tapering off of Zoloft while increasing the dosage of Prozac over the course of a couple of weeks.  This also meant that there would be a time where the amount of anti-depressant in my son's bloodstream was minimal.

It was also during this time that we decided to cease giving my son his daily Concerta which he had been taking for his fleeting attention span and somewhat impulsive behavior.  Since Concerta is an amphetamine and my son was already quite "amped up", it was felt that it served no useful purpose and perhaps masked the effectiveness of the anti-depressant.  What I did notice though is that his behavior since the cessation has been more impulsive and his attention more fleeting.

Back to Prozac.  The tapering partially occurred while we were away at a family weekend.  Perhaps owing to the wider audience but perhaps owing to the change of medication, my son put on quite a show.  He was oppositional and had frequent tantrums.  He would tell others that we didn't care about him and wanted him to die.  He would say that we weren't willing to help him.  He did, however, get it together enough to participate in a few activities but, for the most part he was in pretty bad shape.  What's odd, is that when we got back home, he told our neighbors that he had a great time.

As we slowly ramped up the Prozac, we again saw very little if any difference in his behavior.  This led to an attempt to use a class of drugs known as anti-psychotics.  These drugs are used in tandem with anti-depressants because they are thought to have an amplifying effect on them.  Apparently, this amplification is selective and amplifies "the good things" and not "the bad things" of the anti-depressants.

Manifestations

One of the interesting things about my son's obsession is the manner in which it is manifested in his behavior. 

As I previously indicated, his gym teacher died of a heart attack.  My son has decided that he, too, is a candidate for this sort of cardiac incident.  He will ask anyone and everyone if they think he will have a heart attack.  The absurdity of this lies in the fact that he is about 5 foot seven and weighs just over 100 pounds.  He could be a Super Model.  Beyond that, he eats like a healthy adult in that if given the choice between a large chocolate chip cookie and a handful of strawberries, or even a tomato, he will choose the fruit every time.

In addition, because he has heard that heart attacks can be caused by stress, he has decided that he leads a stressful existence.  He believes that his stress is carried in his belly and spends much time showing people (again, all people - any people) his belly and asking "Do you think I have stress?" or "Can you make my stress go away?"  This unusual behavior leaves most people puzzled.  Adults tend to be puzzled yet understanding - peers tend to be puzzled and frightened.

Someone, at some time in his obsessive period told him that "Every one is made to die.  There's nothing you can do about it, honey.  It's been like that for billions of years."  These three phrases are often repeated without stop when he goes through psychotic episodes. (More on those later).  Otherwise the phrase comes up when he believes he is not getting answers from those to whom he is speaking or when he is feeling otherwise frustrated.

His total obsession with death has left him non-functional in ways that he formerly excelled.  He was tidy and near fastidious.  He cared about his clothing and hygiene.  He also did many chores around the house including cleaning and taking out the garbage. In fact, once a neighbor noticed that the garbage bins were out early and asked if I was home.  He told them that he did it and went on to say that he "does everything in that house." All that has fallen by wayside as he became consumed with death and dying. 

He also often aimlessly wanders out of the house without notice or warning and twice became so lost that he didn't know where he was even though he was 2 blocks from the house.  This, again, from a boy who often rode his bike up to 8 miles away on a whim and made his way back without the aid of a map.

So that's where we're at.  His world has been closed down to a tiny speck that is entirely consumed with death with no room for any other thoughts.  Interestingly, though, the death concept neither includes thoughts of suicide nor any other manner of embracing death.  Rather it is pure fear based.  He doesn't want to die...he wants to live forever. 

Of course, the contradiction of leading an awful, pitiful life consumed by death yet wanting to live forever is entirely lost on him.