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.

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.

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.