Tuesday, September 27, 2011

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.

Sunday, September 25, 2011

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.

Saturday, September 24, 2011

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.

Friday, September 23, 2011

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.

Thursday, September 22, 2011

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. 

Wednesday, September 21, 2011

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.

Sunday, September 18, 2011

Worser

From moments of quiet conversation to sudden violent or near violent outbursts featuring screaming, tantrums, throwing objects and - if people are present - grabbing.  That has been the cycle of the day.  The outbursts are directed at a teaching aide (whom he no longer has) who told him (9 months ago) that all people die eventually.  Her declaration of human mortality was and is too much for him to handle.  He "hates her", he want to "hit her" and "flip her off".  He has threatened to send her "an email telling her she's stupid".  I tell him he already did all these things (although he did not) and he says, "I did?"  I assure him that he did and he calms down some until the next time.

It seems that the lower dose of Prozac that remains in his bloodstream has allowed him to reflect openly on the root cause of his distress.  That he has eaten from the Tree of Wisdom and was turned mortal.

Saturday, September 17, 2011

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.

On The Downside

We are now working our way down to near trace amounts of Prozac in my son's bloodstream.  I have noticed something that is emerging as a pattern of sorts.  When we ramped down the Seroquel and, now, that we are ramping down the Prozac, as we approach very low levels - very very low levels,, my son seems a little brighter.  Still obsessing, but brighter.  He can converse, sometimes, even about new and different topics.  He behaves more predictably.  He carries himself a little bit better.  He can focus a little more.  He's not back to the old way.  But the fog has lifted a wee tiny bit.

The odd thing is that this happens "on the way down", as the drug is eliminated, but not "on the way up" as the drug is introduced.  I also recall seeing it with Seroquel and now Prozac but not the others. I wonder if this means that we don't (or didn't) give these drugs enough time as we ramped up or if we started too high a dosage or if there is some other pharmacological mechanism at play.

I do recall, though, that in my frustration at my son's sleepless nights, at one point, I gave him 25mg of Seroquel (half the dose he started on - when he was on it).  All that did for him was make him sleepy but seemingly had no other effect.  Maybe that was too high?

Thursday, September 15, 2011

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.

Wednesday, September 14, 2011

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.

Monday, September 12, 2011

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.

Sunday, September 11, 2011

Anti Psychotic...Pro Psychotic?

The issue seemed to be non responsive to anti-depressants.  It was decided that amplifying the effect of the anti-depressants using a small dosage of anti-psychotics was worth a shot.  Since my son was often viewed as being "on the autistic spectrum", the anti-psychotic of choice was something known as Risperdal.  Nothing to lose...let's give it a shot.  We already have learned that my son is a slow metabolizer of drugs so we would have to wait a while to check the effectiveness of the treatment.  Or so we thought.

He took the first dose.  It was low.  And within a couple of hours, he was squatting in front of the mirror in his room, staring at himself, muttering quietly.  He would not move.  He would not respond to questions or attempts at conversation. He just stared and muttered.  We tried it for two more days.  But clearly it was making my son psychotic in a manner heretofore unseen. I arbitrarily decided that he wasn't going to take it anymore.  It took about 3 days to work its way out of his system.  Then he returned to "normal".  Not the old normal, of course.  The new "obsessed-with-death" normal but at least he was back.

After that disaster, we decided to try Abilify.  Again, we started with a low dose.  It seemed pretty much uneventful and then after about 5 days, my son started having involuntary muscle spasms.  His head kept drifting to the left and then getting "stuck".  He couldn't straighten it.  Or when he did, it would slowly drift back.  He would also stick out his tongue - also, seemingly involuntarily - in a sort of snake/Michael Jordan manner.  A frantic call to the psychiatrist, resulted in an over-the-phone diagnosis of a drug side effect called tardive dyskinesia that could be treated with a shot of Benadryl.  This side-effect was not unheard of but not so usual. 

Once we got to the emergency room, they confirmed the diagnosis.  We were there for about 6 hours while they waited for the Benadryl to take effect and make certain that everything was OK.  My son took advantage of this situation to ask every medical person who assisted him whether they thought he was a candidate for a heart attack.  He also let them know he was unhappy with his current depressed state and wanted to get better.  He solicited their recommendations which were similar to those he had heard before (eat well, exercise, do good work - or a subtle variant thereof).  He was charming and sweet, as he usually is when he is not obsessing, and even hugged the ER doctor as a gesture of thanks for resolving the spasms.  I was hopeful that the advice would be taken to heart but I knew it would likely soon be forgotten. (and, of course, it was).

We decided to continue the Abilify but now included a drug to counter the muscle spasms.  Our psychiatrist urged us to solicit additional opinions so we did.

Friday, September 9, 2011

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.

Wednesday, September 7, 2011

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.

Monday, September 5, 2011

The Things You Do

While attempting combat on the pharmacological front, we also attempted a variety of techniques to shift behavior and thought processes away from the "Harold and Maude"-ish.  Understanding my son's limited intellectual capacity, we would try to keep the advice simple and concrete.  A strong "do this one thing" instruction with the reason being "I know because I read it in a book".

We used three rules for a time.  The rules were simple:
  1. Eat Well.
  2. Exercise.
  3. Do Good Work.
That last rule covered everything.  We used it for "being kind to animals" and "listening in class" and just about any other thing we could think would fit.  While easy to remember and remarkably easy to explain, we hit the wall quickly. The problem was that when he exercised, he felt great while he exercised.  But when he stopped, he started to feel bad again.  In his mind, this meant the therapy did not work since it had no lasting effect.  There was, therefore, no sense in continuing.  No amount of reasoning would help.  In his mind, the results were obvious and irrefutable.  I did it and now I feel bad so it doesn't work.

A neighbor introduced my son to the "teachings" of noted inventor, futurist and (now) high-end vitamin vendor Ray Kurzweil.  Mr. Kurzweil's thesis in his book, Fantastic Voyage, is that we are at the point in technological development that if you take good care of yourself (buy my vitamins) and live healthily (buy my vitamins) then within the next 50 years bioengineering, medicine and associated technologies will have advanced to the point that you will be able to live forever.

My son carefully wrote down the book title and insisted on purchasing it.  I thought that anything that encouraged him to read would be fine.  The book is written for an adult reader and includes long explanations of science and chemistry.  I agreed to read the book aloud to my son and re-interpret it to simpler terms on the fly.  The book quickly became uninteresting to my son because it was not really an instruction manual (save for the vitamin pushing).  My son was looking for the 10 simple things to do to live forever (emphasis on simple).  I even tried to explain that our three rules were embodied in the text but my son remained skeptical of that.  He never asked me to read the book to him anymore but I would sometimes catch him flipping through it seemingly looking for that magic incantation.

Exercise often helped, if but briefly.  A strenuous bike ride or some challenging martial arts made him feel tired and happy but always, the loss of endorphins afterward left him denying the benefits.

Zoloft

My son had been on a low dosage of Zoloft for several years.  The intent was to help assuage feelings of anxiety and mild obsessive tendencies.  He was anxious about change, in general.  Any disruption of of his life was always upsetting. Any new experience was greeted with an immediate dislike - even if he did really enjoy it.  The Zoloft seemed to help mitigate that.  In addition, he had a habit of asking the same questions over and over again.  Even the most patient eventually came to get annoyed by this behavior."I already answered that question!" and, of course, he would then ask it again.  The Zoloft, again, appeared to make this behavior a little more controllable.

With the advent of the "death spiral", our psychiatrist chose to start upping the dosage of Zoloft.  The strategy was to slowly increase the dosage of Zoloft staying at each new level for several days to check the outcome.  This strategy took us through about 4 weeks.  What we learned was that higher levels of Zoloft did nothing.  Also, because we filled prescriptions for a variety of dosage amounts, I can now make Zoloft change for friends ("I'll give you a 40 for a 20, a 10 and two fives.") and thus began our collection of popular psychiatric prescription drugs.

During this period (and still to this day), my son, completely aware that he was "not normal" began to speak openly about wanting to return to the "old me".  The visits to the psychiatrist appeared to lead him to believe that there would be some magical medication that could facilitate the return.  He really wanted each new dosage level to work and would briefly convince himself that it did.  That placebo effect would be effective for anywhere from 10 minutes to 2 hours.  He would then land with a thud understanding that there was no magic in "that" medication.  He desires for relief and healing were complicated by impatience. "I want to get back to the old me - now" he would say.  Even the understanding that it took many weeks to get away from the old me did not lead to a more patient approach.

We, of course, did not rely on pharmacology alone (and still do not) but more on this later...

Saturday, September 3, 2011

Straw...Camel...Crack...

It was shocking news. Shocking for everyone. Shocking in the suddenness of it. Shocking in the timing. Shocking in the location. Shocking in general.
At school, at an event, the gym teacher had a heart attack and died. In the gym. Right there. The same gym teacher who taught my son. My son. The one who was already having trouble parsing death. My son wasn't really close with this teacher. And, it turns out, that like many gym teachers, fitness was not really part of his lifestyle. But it also turns out that my son's homeroom teacher was very close with the gym teacher. And, it turns out, that the entire school went into "tragedy mode" to provide comfort for all students and staff who felt they needed support.
My son, who was skeptical of such things, did not elect to participate. Instead, he lived with his thoughts and let them fester and grow unabated.
The public mourning at the school persisted for several weeks and was capped off by a memorial service. If there was any single event that broke my son, it would be that one.
Cat, relatives, gym teacher. All in about 5 weeks.
Now, you and I know that death stinks. It's a raw deal. You're born. You live. You die. That sucks. But we have the capacity to rationalize. We make it make sense by saying, we'll "live a good life", we'll "do good deeds", we'll "leave a legacy and be remembered forever". We may not believe it but we say and think those things, file the whole death thing in the back of our minds and return to our mundane day-to-day existence.
My son doesn't have the capacity to rationalize death away. Or, if he does, he's stuck on the "death stinks" thought. He can't get over that. And that's where our journey begins.

Nine Months Ago

We had two cats. Sisters. We liberated them from the Humane Society. I wanted one. But there were two in the cage and they were sisters and my wife insisted that we not "break up the family." Two cats came home with us.
They lived with us since 1992. As kittens and adolescents, they hung out together, washed each other, played with each other and slept together. As they got older, they grew apart. They got to be like a couple of old women sniping at each other and always maximizing the space and distance between one another. But they were both always very sweet to people. Quick to purr, craving and loving attention and sometimes, even, acting like a cat chasing nothing and getting all excited about thread or a housefly. But, easily, for the last 5 years, their primary activity was sleeping. Then eating. And, due to the advancing age, I believe, peeing on the carpet.
This past December, one of them slowed down considerably (if you can imagine that). She stopped eating, then stopped drinking, then grew weaker and weaker. We noticed that her mouth was bleeding and that she was losing weight. A trip to the veterinarian was in order.
As is usual for these events, the vet took a careful sympathetic look at the animal and then a careful sympathetic look at the owner and then did a quick estimate of our net worth, and divided by two to determine the cost of treatment. The cat, he said, was severely dehydrated and had a gaping wound in her mouth that might be infected, may have cancer and is lucky to be alive. He suggested a panel of tests, an overnight stay with re-hydration therapy and a batch of antibiotics. And then, he said, sympathetically, we'll determine the next steps.
After a few days, she seemed brighter and he let us take her home with a bag filled with the equivalent of several gold doubloons. Antibiotics, pain killers, prescription food, energy supplements...the works.
She lasted but a few more days at home. She again weakened, would not eat or drink, no matter how clearly I explained the price of the food. With a trip back to the vet, it was determined that she had gone blind and that the cancer had likely spread. She was in pain, she was likely quite scared and didn't have much longer left. We were left with a painful decision.
My son, who had known this animal his whole life was suddenly thrown in to a situation in which he was facing dealing with death in a very real and very personal way. He had heard of loved ones who had died. He experienced it all abstractly but here it was in a very real and concrete way. This animal was going to die and he was not going to be able to see her any more. What's worse is that we were deciding to put her life to an end.
This shocked him. And frightened him. He spoke up and offered opinions that I never knew he had or, quite frankly, I never knew he had the capacity to formulate. "It's wrong to put a cat down!" "You need to die naturally!"
We thought that maybe we could explain the situation. The pain. The suffering. The quality of life. After a slow patient explanation and some discussion with the vet, he seemed to achieve some level of resolution. He didn't like it. But he seemed to be OK with it.
Two weeks later, news arrived at our home of the death of two elderly relatives who my son knew and met. My mother was quite upset with the news and my son absorbed that grief, as well. He began to worry about other aging friends and relatives. He would speak to elderly neighbors about death and call others who lived far away. He would speak to them about whether and how they were able to make peace with death. This led to many calls and discussions with people from near and far. "Are you aware that you son is asking about death?"
Of course, we knew. And we thanked them for their patience. Most feared that he was suicidal but, in fact, that was the furthest thing from his mind. He really wanted to live forever. "I have to much to do to die", was a usual statement.
It was annoying but manageable until one more thing happened...

Every Story has "A Beginning"

My Dad died when I was 14.
That was a long time ago. Almost 40 years ago. To say he died is perhaps incorrect. He killed himself. But not in any sudden and abrupt manner. He did himself in slowly. Drop by drop...quite literally. He was an alcoholic having discovered the solace of the bottle mid-way through his life when he felt his life was not working out as he planned. I have now lived longer than my father.  When he first became depressed, he worked less and drank more. He wasn't much of a drinker prior to that.  I don't even remember alcohol being in our house.  He turned out to be a sleepy, kind drunk who would secrete his bottle in his attache case, take it with him to the bedroom, close the door, lay down, read bad pornographic magazines and drink himself to sleep midday.
I know about the pornography because I happened upon the magazines once when I was skulking around, looking for his secret booze stash in order to toss it out. We all knew about the drinking problem and I had visions of somehow saving him.  Then I found the magazines. It was a really disappointing find for a teenager entering puberty. The magazines were filled with stories.  There were one or two grainy black and white photos and lots of text. And stories. Stories so dull, I didn't even bother to read them. Apparently my Dad did. I guess he found them quite thrilling. Apparently my Dad was either a strict intellectual or so embarassed by the whole thing that he could only bring himself to go but so low.
After about two years of this, that included psychiatric treatment, pharmacological prescriptions, time with AA and an attempt at treatment in an addiction facility - he gave it up. At least, that's how I see it. His liver gave out and he stopped fighting feeling that he had nothing more to live for.
But this story isn't about me. Well, not directly. This story is about my son. Now 15, he has all manner of learning disabilities and delays, social issues and cognitive ones. He has a low IQ, poor impulse control and a short attention span. He is not autistic or maybe he is. He is not mentally retarded or maybe he is. There is no agreement in "the professional community" about him except that he is "special needs". He has commanded our attention all of his life. Colicky at birth, speech delays at age 2, motor delays and on and on. He has a file about 8 inches thick that follows him from school to school growing by about 3/4 of an inch per year.
The latest and most difficult period started about 9 months ago and is the reason for this. I am trying to make sense of it all and hope that by committing it to print, it will all somehow become clear.