Time Has Passed

A lot of time.  My son's stay in the hospital may have been helpful for him.  Maybe it was most helpful for us.  He was in for about 10 days.  It was far from home (about 90 minutes driving, in traffic).  He definitely hit bottom some time around his stay. 

During visiting hours once, a new child was admitted.  As all patients do, he arrived restrained on a stretcher.  Once inside the secure facility, he was released and made his way to the common room where he awaited intake.  He sat quietly and ate a snack.  My son approached him and asked the equivalent of  "What are you in for?"  The boy said, "Attempted suicide".  My son didn't understand the word "suicide" and the non-comprehension registered on his face.  The boy then reworded his response. "I tried to kill myself."  My son was obviously confused and flustered by such a response - after all he wanted to live forever!  He said, with obvious mental clarity and confusion "What did you try to do that for?!?!?!"  The boy was taken aback.  He thought a little and said, meekly, "I had a bad day."  My son thought a little about that and said, "I hope you have a better day, tomorrow."

When my son came home, he was stable.  Still a little on edge and sometimes still violent.  He was on Risperdal, Remeron and Wellbutrin.  We had Benadryl available.  He started out at his old school for a couple of weeks while we located a new placement.  The new placement was a life skills facility where each student had a one-on-one aide.  No academics, some vocational work.  Lots of behavioral support.  Maybe the best placement given that his behavior stood in the way of any progress on any front.

Whether it was the passage of time, the behavioral support, the new drugs, the new placement or all of those things...or something else entirely, slowly but surely my son began to "come back".  He re-engaged with life as he lived it before.  He began speaking, riding his bike, conversing with neighbors, spending too much time on facebook, doing little self-motivated community service projects and grooming.  He started talking on the phone, re-engaging in social activities and Tae-Kwan-Do. He showers, again, toilets and cares about his hygiene. We have tapered off the Remeron and then the Risperdal.  The behavioral specialist who were engaged to get him to control the violent outbursts saw that behavior maybe for three weeks.  Now they are focused on such mild behavioral issues such as "reading with correct vocal inflection".

We started ramping up the Concerta again to see if we get better impulse control or attention.  We are back to worrying about his social disabilities and his lack of a close friend.

I still sometimes see mannerisms or gestures or hear words that trigger my fears of a slide back into the abyss but these appear to be fleeting, random actions and not indications of regression.  Knock on wood.

Now I have a lot of time to reflect on the 18 month "dark period".  What is most difficult for me is my wife's family's reaction.  My mother visited us twice, my sister 3 times.  While my mother was not really helpful, and was mostly upset, her presence was extremely supportive.  My sister who has a background in special education came with boxes of tricks - that were mostly useless - but she came and tried.  That was good. 

My wife's family, on the other hand, who always talk about the strength and enduring nature of familial bonds and the value of family, basically abandoned us.  Her mother stopped visiting us.  None of her brothers or sisters offered any assistance.  No uncles. No aunts.  When her mother called, the last thing she wanted to hear about was her grandson. I am angry about that.  I didn't really notice or care until now - that I can reflect on it.

A Strange Turn of Events

We had an MRI for my son last week and just got the results.  The neurologist noticed some old brain damage on the left side of my son's brain.  He was quick to state that this was old and likely unrelated to what we are seeing now but that it was unexpected.  He said it explained why my son is left handed and maybe (emphasis on maybe) why he has a low IQ.  He said he needs to think about it some more and will get the entire image CD to review it. Then he wants to see us and my son and maybe test and see if my son ever had a stroke (!) and has any issues obviously related to this damage (motor issues, specifically).  

 

As far as medications go, my son continues to take the 45mg of Remeron at night and 600 mg of Neurontin 3 times a day.  The only thing that seems to be true is that he sleeps at night (although certain major events may disturb that sleep - e.g. going back to school, arrival of my Mother).  Aside from that he continues to perseverate and rarely engage in conversation.  We have had a few violent outbursts (about 3 or 4) over the past few weeks.  In my mind, we have seen no benefit from this regimen of medications - save for the sleeping at night (granted, a great thing - but not the home run we would like to see)

 

So...brain damage..no solution.  Anxiety...no solution.  At best we have some fodder for medical papers but still no sign of my son.

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.

More Aggression

We're starting to see a little more agression.  He attacked Mom at a school meeting today as he paced about the room while she explained his situation.  He grabbed a book and smacked her on the head.  I think that this might have been a response to her descriptions of his current state and how he didn't like it.  It could have been random, too, but somehow that seems unlikely.

Interestingly, he started 200mg of Neurontin the evening before.  I am wondering if he is showing more aggression as he starts thinking more clearly and being more upset about his situation.  That is what one might call an overly optimistic take on a depressing situation.

He supposed to take 100mg/200mg Neurontin (morning/evening) for 3 days and then switch to 200mg/200mg.  We are supposed to keep the Remeron at 30mg per day.

Remeron & Neurontin

An eventful week.  On Wednesday my son hit his teacher and was expelled from school.  This, of course, is the special special ed. school that is supposed to be able to deal with him in his basically non-functional state.  So he's stuck at home until Monday. The psychiatrist suggested we start the Neurontin and keep up with the Remeron.

So he's still taking the 30mg or Remeron (once a day) and the 100mg of Neurontin (Gabapentin) twice a day. He seems marginally more at ease but he still paces, wanders and talks to himself ceaselessly. He hasn't been aggressive to us but that is not really predictable. It could happen anytime. He has started to do things like look at workbooks (math, reading, etc), try to sit down and color and wear old clothes that don't fit him. He has no ability to focus on any of these attempted activities but I think he's using them to try to get back in touch with "his old self".

The most obvious effect we see from the medication (the Remeron, I guess) is that he sleeps at night. It is not clear to us we are seeing anything else as a direct effect. It might be the case that his attempt at activities is a hopeful sign and a result of the medications but it's hard to tell.

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

Three Pretty Good Days and then Back to Crap

We experienced three pretty good days Wed, Thu and Fri in which my son was lucid and conversational and engaged.  He woke up Saturday muttering, pacing and non-responsive.  Same today. This certainly sucks.  We have a couple of aggressive and violent outburst but mostly he sleeps when he's not pacing and muttering.

Curious Event ending in Heartbreak

Yesterday my son woke up and was basically lucid.  He was a little low energy but was conversational and engaged.  He went to the orthodontist, had a 50 minute procedure and was cooperative and even happy.  He spent the day doing some chores that he would usually do like feeding the cat, cleaning up after himself, going to the grocery store.  He was on facebook for a while.  He cleaned up his room and put things back in order that he had thrown or discarded in anger over the past few months.  There used to be a lego phone in his room that I had to remove because he smashed it during a tantrum in which he said he was going to call the "notorious teaching aide" and tell her that she's stupid.  While cleaning up his room yesterday, he asked me where the phone was.  I said that I put it away because he was smashing it up.  He said that had no memory of doing that.  He asked that I put it back.  He went to sleep by himself yesterday evening and slept most of the night

 

When he got up this morning, he told me it was too early.  Then he switched over to  talking to himself, pacing and being non-communicative.  One good day.  That's all we have.  I put the lego phone back into hiding.

 

He's been getting the 37.5 mg of Effexor morning and evening.

Restless, Violence then Calm then Babbling

Last night was another night of irritability, aggression and anger.  A frantic call to the doctor led to the conclusion to skip ahead to Effexor twice a day (37.5mg) (usually it is once a day for a week, first).  There was squealing, banging, nakedness and grabbing most of the evening and parts of the night. Literature indicates that Effexor takes about a month to reveal itself as helpful or unhelpful.

He got to sleep in this morning because of an orthodontist appointment.  When he woke up he was communicative and engaged.  He spoke to a neighbor, fed the cat and had a little breakfast even cleaning up after himself.  His orthodontist appointment was quite normal.  He spoke and asked questions.

When we got home, he was OK but began to start muttering and gesticulating after about an hour.  He then tried to take a nap.  I had to go to work but suspect that the degradation has continued.

We see the childhood psychiatric medication specialist on Tuesday.  The likelihood of a miracle is quite small.

Heading to a Dead End?

My son had a sort of rough weekend.  He was mostly non-communicative and often aggressive as we tailed off the Fluvoxamine.  He slept little Saturday night and eventually really fell asleep around 6am.  He awoke at about 2pm on Sunday and was quite lucid and conversational.  He helped himself to food and cleaned up after himself and went on facebook for a while.  This lucidity lasted for a few hours and towards evening, he then regressed to being non-conversational.  He had a few moments of lucidity during the evening and one moment of serious aggression.  He slept OK. 

 

When he woke up, (well, when I woke him up), he was again mostly non-communicative.

 

Because of his late start yesterday, I didn't start him on the Effexor until this morning.  I read on the web that this drug is the chemical equivalent of electroshock therapy and that it is a drug of last resort.  That last bit has me worried.   

Out with Fluvoxamine

We've been tailing off Fluvoxamine and instead we will switch to Effexor.  Looks like the "black box" warning on Cymbalta has led to this reconsideration.  My understanding is that Effexor is like the electro-shock therapy drug.  The last great hope, as it were.  If this does nothing, I don't know what we do.  As usual, whilst tailing off Fluvoxamine, we saw a little bit of lucidity. My son slept restlessly all last night and then at 6am fell asleep for real and woke up around 3pm.  When he arose, we got some conversation and interaction from him. He did a few normal independent person things (ate, made some Quik, colored a bit) but after a couple of hours headed back to muttering and incoherence including screaming and aggressiveness. By my calculations he has between 33% and 10% of the dosage level of Fluvoxamine in his bloodstream.  We'll start the Effexor tomorrow.  37.5mg.

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!"?

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....