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?

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.

Six Days of Remeron

We've seen sleepy but that's about it from Remeron so far at 15mg.  We'll be upping the dosage and seeing what happens.  So far my son has been pretty much the same.  On the positive side, he has made some efforts at self-care, trying to microwave some soup for himself, taking a little more care in toileting.  On the negative side, he was extremely aggressive today, doing a lot of attacking and squealing, throwing and banging.  Still completely non-communicative, pacing and perseverating although still responding to verbal commands that require no verbal response.

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.

Two Weeks

My son has been on Effexor (2x37.5mg) for about 2 weeks. There is some difference in his behavior but it is slight at best. He sleeps more consistently at night (perhaps too much on weekends) but still not quite all through the night. This is the most most noticeable change. He is still withdrawn and mostly disinterested in anything beyond perseverating. He still has no interest in personal hygiene. He is calmer and attacked only once this week - today in fact and perhaps this was related to sleeping until about 2pm and so missing his morning dose. He is disengaged at school and at home paces and perseverates ceaselessly. He said a handful of words not related to his perseverations in the past week. He spoke to my mother on the phone, said he loved her and told her something else we couldn't decipher (we think it was about death).

Besides somewhat better sleep habits and a calmer disposition, I do not see that Effexor is bringing back my son as he was. It seems to simply be sedating the one we have.

Meeting with a Specialist

My son was in a state (as he has been for the past several days) in which he paced and perseverated endlessly.  The perfect to meet up with a specialist. Full on detached mode, as it were.  At the appointment, attempts were made to converse with my son but with no success.  So we spoke about the situation and I shared my observations.  He pondered my son and was puzzled.  He has seen this sort of behavior before - it's just that he never has seen it develop suddenly. Rather, kids who behave like this have always behaved like this.  The most significant takeaway was that my son was in a state of high anxiety and that was, in his mind, the prevailing and overarching issue.  He said the approach taken thus far was reasonable and what he would have suggested but now is the time to "fish in a different pond" - pharmacologically.  He thinks the SNRI medication is a good place to be although he seemed to prefer Cymbalta to Effexor and was bemused at the pharmacist's reaction to it. 

Although he said he needs to think about the sequence and priority, he suggested the following:

1. Increasing Effexor to at least 150mg/day before abandoning it

2. Trying Remeron

Ridiculous?

I was up for a few hours sitting in the dark in my son's room waiting for him to go to sleep.  He won't stay in bed unless I sit there.  He'll otherwise wake up and turn on the light and mutter to himself and pace.

While I was there I was pondering his situation.  He's been regressing these past few days with no dosage change of the Fluvoxamine (25mg).  He back to being basically non-communicative and perseverating.  I was thinking about upping the dose when it occurred to me that the proper course of action might actually be to reduce the dose.  There is clearly a cumulative effect of the drug as it reaches a steady state in his bloodstream.  We have seen this with other SSRIs and the anti-psychotics.  At the start, there is some basic improvement and then after a couple of weeks - back to crazy.

That got me thinking...maybe he's just really sensitive to these SSRIs and his paradoxical reaction is because of this sensitivity. Maybe the right course of action is to reduce the dosage lower and lower and test the reaction and behavior at these lower bloodstream equilibrium levels.  I think I'm going to try 12.5mg tomorrow...

Circles

A few days of progress and then a few days of regress.   It's positively maddening.  He's off the Geodon.  It must be completely gone.  He was quite communicative all week although quite focused on death. He got a little oppositional at school but there was some learning going on. Not a lot but some.

He's still on 25mg of Fluvoxamine.  On Friday he started getting quiet and muttering.  When he spoke he said some insightful things like "I have been wasting my life".  I tried to build on that and explain how to move on from that and not waste his life anymore.  He's not ready to receive that yet.

There was at least one evening filled with anger toward the dreaded aide. This resulted in the destruction of an old portable keyboard device (He had this to help him compose before he had a laptop). It also resulted in many scuffs and scratches in his door.

He attacked me once but not with the vigor of days gone by and without any resulting bruises or scratches.  He was also consolable.

Last night he was awake all night talking to himself about "the aide".  He slept briefly in the morning.  He ate a bit and is now sleeping soundly.

So...what now?  What happens the rest of the week?

And guess what, I think our other cat is sick.

More Words

Yesterday there were 4 violent outbursts.  Blind rage and anger at the now infamous teaching aide.  I got in his way and was clawed, scratched, kicked, hit and almost bitten.  Each time I wrestled him to his room where his tantrum continued, highlighted by door kicking and shrieks and tearing of paper and notebooks.  I was convinced the Geodon was to blame and wanted to drop it to 0mg (from 20mg).  The Psychiatrist suggested that the withdrawal side effects, even from that low dosage could be problematic.  I agreed to cut it to 10mg (by cutting the capsule in half, tossing the powder from one half and giving the other half to my son).

This morning when he awoke, my son was still muttering and pacing.  He followed instructions as usual to come and eat breakfast.  I sat and watched him in silence.  He looked at me and said "Daddy, your eye is red."  And indeed it was from my rubbing it to disperse some minor irritation.  Never have 5 words excited me so.  The he got up and walked around some more.

He then approached our house guest (who perhaps is owed a blog of her own) and said "I love you" and had a short conversation with her about death.

I looked in his room and saw that he attempted a floor puzzle.  In addition, he seems to be trying to color a little - and keeping in the lines, too.

He's still pacing and muttering (the usual phrases) but there are 4 faint glimmers of hope in a single morning.  Yet the day is long and just now started....

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.