Changes, Events, Happenings

Starting the first of January, we were forced to change health insurance providers.  We were moved from an open system to a closed network provider.  This meant that we had to change doctors.  This also meant my son had to change doctors.  It took a few weeks to get "plugged in" to the new network so we continued with the Remeron (45mg) and I arbitrarily decided to tail off the Neurotin (as many as 3 x 600mg).  Neither drug appeared to to much but make my son sleepy.  The Remeron alone accomplished that.  So much of the month was spent listening to my son perseverate.  Nothing much else happened.  He didn't get better and he didn't get worse.  When he finally found himself asleep, I felt respite as well as he did (I assume) for he finally stopped repeating the oft-said phrases.  Usually, the moment he awoke, it all started again.  Sometimes, I overheard him muttering as he drifted off to sleep.

Last week, we met with the new psychiatrist.  After hearing our story and even seeing my son in action (he attacked my wife and then me during the appointment), she decided to try Haldol.  She too believes in the go low and slow approach.  He started at 1mg once a day while keeping the Remeron as is and adding Cogentin because of reaction he had to Abilify.

Haldol, being an old anti-psychotic, fell out of favor because it could compromise liver function.  It is still used but usually teamed with occasional blood tests.  So it is with us.

After the first day on Haldol, my son came home from school quiet and agitated.  He marched into his room and had a tantrum.  His babysitter called me in a panic.  I told her to lock him in his room and let him work it out.  I called the psychiatrist fearful that he was having a reaction to the Haldol similar to what we had seen before with other drugs.  The psychiatrist called the babysitter and got more detail and decided it may just been an unrelated mood thing.

So we kept on.  We started to see slight differences.  He began to speak to us more.  He began to ask if he was sick.  He started to ask some the same old questions of a few months ago. ("Am I going to die?", "Will I have a heart attack?") and some new ones ("Where has Oprah gone?", "I used to ride my bike a lot, didn't I?").

After about 4 days at 1mg, the doctor got back to us to see how things were going and because there was some change, she suggested going to 2 mg.  We have seen my son pick up the phone and talk to people (something he has not done for several months).  We have seen him try to color a little.  He still perseverates.  He is still anxious and depressed.  He still has some OCD-like behaviors but he is more communicative.

We'll have to see where this goes...

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?

Steady - That's About It

We've been at 45mg of Remeron and 300mg of Neurontin twice a day and things are pretty much the same.  A few words every few days.  Little else.  Still anxious and agitated.  No real conversation or communication.  Still perseverating.

I'm thinking about 2 things. 

1. Going back to check if very low doses of things we have already tried can help.  Specifically Prozac, Seroquel, Effexor and Geodon saw short periods of "awakening" as we either tailed off or built up.
2. Schedule an MRI.  I mean why not?  If there are structural problems in his brain there's nothing we'll be able to do but, I suppose, at least we'll know.

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.