Another Specialist Speaks

The holiday season provided us with a gift.  Owing to a cancellation, our February appointment scheduled back in August with yet another world-renowned expert was moved up to yesterday (Thursday).

Our son was in tip-top form: agitated, upset, violent, non-communicative - a full stage show complete with scratching, pinching and screaming. After he settled down a little, he did say to me "I want to go home". My wife had to take him home after about 20 minutes. My son took no comfort in being at the clinic and apparently was quite upset about the situation (maybe that specific one or his own or both).  I sat with the Doctor and gave him the background, answered his questions and described the situation.

The doctor said that my son's situation was unusual but not unheard of. He shared the following:

1. My son's brain may be in a state of flux right now. This could be somewhat natural changes or perhaps heralding a permanent regression of his capabilities
2. The medications that have specific and well-known effects on "normal" brains have different effects on "spectrum" brains and it is good to use low dosages and slowly raise them. He liked our approach.
3. If my son's brain is undergoing some sort of change then we are treating it using medications when it is in a state of flux and the effect of medications becomes even more unpredictable. If we think my son's condition has stabilized (at awful) then it might be valuable to go back and try the anti-psychotics again - low and slow. He said that in his experience, anti-psychotics of one sort or another are the ultimate solution.
4. He thinks that Neurontin is OK because it is well tolerated but noted that it is mild in it effectiveness. He thinks Depakote might be a better mood stabilizer even though it requires blood monitoring.
5. He thinks higher doses of Klonapin might be helpful (3,4 or 5mg).
6. He thinks the MRI is a good idea if only to rule things out.
7. He thinks genetic testing might be beneficial if only to identify chromosomal or genetic anomalies that might be able to point to a specific treatment regime.

Like some of the others, he was not wholly convinced that the death obsession was the root cause and may have only been the straw that broke the camel's back - meaning this was inevitable anything could have triggered it.

He was nice and thoughtful and did his best not to shrug his shoulders and say "I dunno".  He said he would be willing to confer with our psychiatrist and even see my son on an ongoing basis or every now and then if we thought it would be helpful.

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?

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.

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.

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.