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.
Tuesday, November 20, 2012
Monday, April 2, 2012
Hospital
The facility is an adolescent unit. It seems to be primarily servicing teenage girls likely with eating disorders. My son is one of a couple of boys. The patients are easily identifiable owing to their lack of shoes. Two reasons for that - to prevent fleeing and because of shoelaces (get it?).
The presence of girls is irrelevant to my son as he is quite wrapped up in his own situation. He has been hospitalized for about 5 days so far. The first 3 were more or less uneventful. He was pretty well-behaved. He sounded a little over medicated as they were feeding him a lot of Haldol. Much more than he was getting before. They decided to switch to Navane and that seemed to go OK.
During one visit my wife off-handedly indicated that my son was likely to be home by the end of the week. That appeared to give him ideas and he seemed to decide that if he really misbehaved he would get home even sooner. Of course, that logic only makes sense to him. But the net result was an 18 hour period during which he attempted to flee, attacked staff and other patients and acted out in many ways. He was restrained and put in isolation. They don't mess around there. He was given more Navane, benadryl and Adavan all in an effort to calm him.
We spoke with him and made clear that he would be there as long as needed. That we did not know when he would be released. That it was all up to him and his behavior. Maybe that helped, maybe not.
He was back to being somewhat calmer next time we visited. Now they are thinking about trying Risperdol again. I'm thinking if they want to experiment then that's the place to do it. They are also looking into non-stimulant-based ADHD drugs.
The presence of girls is irrelevant to my son as he is quite wrapped up in his own situation. He has been hospitalized for about 5 days so far. The first 3 were more or less uneventful. He was pretty well-behaved. He sounded a little over medicated as they were feeding him a lot of Haldol. Much more than he was getting before. They decided to switch to Navane and that seemed to go OK.
During one visit my wife off-handedly indicated that my son was likely to be home by the end of the week. That appeared to give him ideas and he seemed to decide that if he really misbehaved he would get home even sooner. Of course, that logic only makes sense to him. But the net result was an 18 hour period during which he attempted to flee, attacked staff and other patients and acted out in many ways. He was restrained and put in isolation. They don't mess around there. He was given more Navane, benadryl and Adavan all in an effort to calm him.
We spoke with him and made clear that he would be there as long as needed. That we did not know when he would be released. That it was all up to him and his behavior. Maybe that helped, maybe not.
He was back to being somewhat calmer next time we visited. Now they are thinking about trying Risperdol again. I'm thinking if they want to experiment then that's the place to do it. They are also looking into non-stimulant-based ADHD drugs.
More of the Same but Different
The initial period after Haldol resulted in greatly increased engagement. My son spoke more and was more lucid. The doctor realized that Haldol was limiting in the the types of anti-depressants that might be used so she decided to taper off the Haldol and switch him to Perphenazine. His initial reaction to Perphenazine seems to be violent aggression. He was out of control, attacking others and being oppositional. Since this was his initial reaction to Haldol as well we kept going. The dosage was increased and the aggressiveness continued unabated.
After a couple of weeks, we switched back to only Haldol. In this period his school decided he was unmanageable and was building the case for placing him elsewhere. At home things were unsettled as well as he decided that attacking his mother was acceptable behavior. He would not attack me and he would not attack my wife when I was present. This meant that when I was at work I was on edge constantly fearing that my wife would be hurt or driven to the edge.
An emergency trip to the psychiatrists office led to such a high level of aggression towards my wife and the staff that the police were called. The psychiatrist suggested that my son be taken the emergency room. The police were not allowed to take him to the local hospital (about a block away) and could only transport him to the county psychiatric emergency facility.
He stayed there about 8 hours until the attending psychiatrist could see him. When the psychiatrist did see him, he was unhelpful. But he held my son overnight.
The facility was not new and had the look of a bunker from the outside. Visiting my son was allowed in a doubly-locked private area not unlike a prison visiting room. Staff were in attendance at all times. My son was scared and upset.
After an overnight stay, we were duped into taking him home. Duped because apparently if you leave the emergency room, the search for placement is halted. They wanted him out because he was needy, bored and lonely and required a full-time attendant and they were going into the week-end with a skeletal staff.
We found out about this con after we brought him home. We decided to try the weekend at home. The results were basically unchanged. He was sort of manageable but would go after my wife unprovoked. On Monday I had to work late and the evening was eventful as my wife fought off unprovoked aggression from my son. She eventually wrestled him into his room were he remained until I returned.
The evening was peaceful but tense as my wife was upset and nervous around him. Sensing this, he was on his best behavior and was sweet and helpful. This was the usual post-aggression behavior.
In the morning, he got in the bus to go to school and moments after he left a phone call from the driver indicated that my son had undone his seat belt and lunged at the driver. I told the driver to bring my son home and I took my son to the local emergency room.
We stayed there about 14 hours until a placement was found in an adolescent psychiatric unit about 50 miles from our home. The entire 14 hours was trying because my son wanted to go home, wanted to walk around, was bored and finally when the ambulance came to transport him - was afraid that he was never coming back. We were not allowed to accompany him during the transfer.
After a couple of weeks, we switched back to only Haldol. In this period his school decided he was unmanageable and was building the case for placing him elsewhere. At home things were unsettled as well as he decided that attacking his mother was acceptable behavior. He would not attack me and he would not attack my wife when I was present. This meant that when I was at work I was on edge constantly fearing that my wife would be hurt or driven to the edge.
An emergency trip to the psychiatrists office led to such a high level of aggression towards my wife and the staff that the police were called. The psychiatrist suggested that my son be taken the emergency room. The police were not allowed to take him to the local hospital (about a block away) and could only transport him to the county psychiatric emergency facility.
He stayed there about 8 hours until the attending psychiatrist could see him. When the psychiatrist did see him, he was unhelpful. But he held my son overnight.
The facility was not new and had the look of a bunker from the outside. Visiting my son was allowed in a doubly-locked private area not unlike a prison visiting room. Staff were in attendance at all times. My son was scared and upset.
After an overnight stay, we were duped into taking him home. Duped because apparently if you leave the emergency room, the search for placement is halted. They wanted him out because he was needy, bored and lonely and required a full-time attendant and they were going into the week-end with a skeletal staff.
We found out about this con after we brought him home. We decided to try the weekend at home. The results were basically unchanged. He was sort of manageable but would go after my wife unprovoked. On Monday I had to work late and the evening was eventful as my wife fought off unprovoked aggression from my son. She eventually wrestled him into his room were he remained until I returned.
The evening was peaceful but tense as my wife was upset and nervous around him. Sensing this, he was on his best behavior and was sweet and helpful. This was the usual post-aggression behavior.
In the morning, he got in the bus to go to school and moments after he left a phone call from the driver indicated that my son had undone his seat belt and lunged at the driver. I told the driver to bring my son home and I took my son to the local emergency room.
We stayed there about 14 hours until a placement was found in an adolescent psychiatric unit about 50 miles from our home. The entire 14 hours was trying because my son wanted to go home, wanted to walk around, was bored and finally when the ambulance came to transport him - was afraid that he was never coming back. We were not allowed to accompany him during the transfer.
Wednesday, February 1, 2012
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...
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...
Wednesday, January 4, 2012
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.
Friday, December 23, 2011
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:
- 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
- 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.
- 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.
- 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.
- He thinks higher doses of Klonapin might be helpful (3,4 or 5mg).
- He thinks the MRI is a good idea if only to rule things out.
- 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.
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.
Thursday, December 15, 2011
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?
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?
Subscribe to:
Posts (Atom)