Sunday, July 06, 2008

Good News?

I just read an article titled Multidimensionally Impaired: The Good News (Journal of Child and Adolescent Psychopharmacology, volume 15, number 3, pages 510-519). It's about a follow up study of a bunch of 10 year olds diagnosed with Psychosis NOS (translation: It's not schizophrenia or bipolar, but they are nuts!)
At the end, they have two example case reports. Reading through both of them, I can see clearly how the psychiatric system has mismanaged them. It makes me sad.
Firstly, there's 'G', a girl described as having a 'good outcome'. And she does, no doubt about that. Her childhood had some rough patches, but at 17 years old, she was doing well in a challenging school with several friends, looking forward to college. But that doesn't mean the psych system deserves the credit.
Her problems started when she was 6 years old. Her family was going through some stress (they don't say what was actually going on) and she had poor social skills and was having severe tantrums. They figured she was just stressed out, but after whatever problem the family was having was over with, G was still having tantrums. She was taken to a child psychiatrist, who put her on haloperidol.
Now, this is the first thing I question. Was anything else tried before putting such a young child on such a risky medication? I've heard many people complain that psychiatrists (who, unlike psychologists, can prescribe medications) don't seem to try any other solutions before leaping to medication. Obviously, unless he's a really big fool, the psychiatrist wasn't giving haloperidol to help her with her social skills. It's become unfortunately common to use neuroleptics to treat aggression, especially in developmentally disabled people and children. These are risky medications, and even worse, you aren't dealing with the cause of the aggression (except in the rare cases that it truly does seem to be a chemical imbalance). Just because the family stress is done doesn't mean it's done affecting G.
Anyway, G soon developed dyskinesia and was taken off haloperidol. She did fine for the next 2 years, and then they started her on risperdal for motor tics. (This is even worse. Unless it's severe, which it clearly wasn't for G, motor tics are just an annoyance. Not worth risking really nasty side effects. Besides, her motor tics could have been caused by the haloperidol she took at 6 years old.)
It was when G was 10 that her worst problems started. She started hearing voices criticizing her while she was in school and as she did her homework. Her medication was changed to trifluoperazide (from the patient information sheet, it sounds like yet another neuroleptic), but that didn't work. These voices were so upsetting that her parents pulled her from school. At 11 years old, she was admitted to a psychiatric hospital (the one the authors worked at) with explosive outbursts and unusual fears, as well as auditory hallucinations. Her medication was stopped for observation, during which time she was obviously not psychotic. She was, however, inattentive, distractible, and impulsive, so without looking for any other reason she might have trouble paying attention, they diagnosed her with ADHD and Psychosis NOS. The latter was said to be 'in remission' even though the symptom that lead to that diagnosis, the auditory hallucinations, were still ongoing. She was discharged with a prescription for methylphenidate, which she stopped taking soon after. The auditory hallucinations continued until a month after discharge, then stopped and have never recurred. At 13 years old, she had a labile mood but no other problems.
It's unclear what effort they took to find out G was still hallucinating. Certainly, they didn't know until G told them when she was 13. It's interesting that G's big problem was nasty voices, but that's not actually why she was hospitalized - she was hospitalized because of her outbursts and fears, which were most likely an effect of her hallucinations. Clearly, they failed to help her with those hallucinations. If anything, they helped her solely by getting her off neuroleptics, which in rare cases can cause hallucinations. Considering that she stopped her stimulant medication without big problems ocurring, it's pretty clear that med was probably unnecessary. I wonder about her school. Could it be that she was under a lot of academic pressure, and she reacted by hallucinating? Indeed, she might have been hallucinating at 6, too, and that's why she had her tantrums. And regarding her ADHD diagnosis, she was under so much stress at the time - even if just from being hospitalized and hearing nasty voices, and not also the cause of the nasty voices - that I put little faith in that diagnosis.
Now, G turned out fine. I suppose if she's under more stress later on, she might have another episode (in which case, I think you could make a good argument that she needn't bother seeking psychiatric 'help'), but at last report, she was doing great. Their second case report wasn't so lucky.
'B' was first seen as a two year old boy with speech delay and disruptive behavior. (They don't say what kind.) At 6 years old, he started having auditory hallucinations when stressed. He was hospitalized at 6 and a half years old, as a hyperactive, self-injurious boy with auditory hallucinations. At 11 years old, he was living in a residential treatment center. Methylphenidate had worsened his symptoms, and thioridazine and haloperidol hadn't had much effect. He was still on haloperidol.
B clearly has an early history of being institutionalized. That poor kid. Many 6 year olds are scared to have their mom leave them at school during the day, and when he's already under a lot of stress, he has to stay away from home - at an institution. And he probably guessed it was because of his behavior, so he probably blamed himself. They don't say when he started living in the residential treatment center, whether he went straight there or got to come home for awhile, but by the time he was 11 years old, he was living there.
He was referred to another hospital (the one the authors worked at) at that age with the following description: "aggressive behavior, extremely erratic and unpredictable relationships, extreme fluidity in functioning and unpredictable aggression, as well as poor reality testing, with distorting of experiences and hallucinations." The admission exam only showed anxiety. His haloperidol was tapered off. In the hospital, he was "very affectionate and clearly tried hard to cooperate" but got upset at shift changes and when the other kids teased him. He was sent back to the residential treatment center with the diagnoses of Psychosis NOS and ADHD and a prescription for methylphenidate (which hopefully had a better effect than the last time he took it).
That referring description, combined with the vastly different description of his behavior in their hospital, worries me. Either the referring doctor was greatly overrating B's problems, or he acted vastly different in the hospital than the treatment center. The first one suggests similar issues as my teachers had with me, overreacting, pathologizing and exaggerating the slightest thing. The second suggests either that he was really reacting badly to haloperidol, or that the treament center was a really rotten place for him. It's kind of odd that they gave him the same medication he'd already had an adverse reaction to earlier - as well as the note that this is the same meds and dx's that G got. What is it about them and ADHD + methylphenidate?
At 13, B was still in the residential treatment center, on methylphenidate, clonidine and carbamazepine. He had less ADHD symptoms, but he'd set two fires and was often caught cheating and stealing. He was not psychotic. Between that time and when he was 15 years old, he was transferred to a group home and then back to his home. He set a fire in the kitchen and was repeatedly kicked out of school for fighting. By the time he was 17 he'd vandlized, set fires, shoplifted, and assaulted (getting 2 years probation). He'd been hospitalized for 2 weeks because of self-injury and then was sent to another residential treatment center. He was on methylphenidate, guanfacine and buproprion. He was no longer affectionate and trying to please, instead he was explosive, impulsive, avoided eye contact and "spoke in a monotone voice, except when he argued with the adults in the room". He was diagnosed with ADHD, ODD, Psychosis NOS (in remission) and marijuana abuse. They were discussing putting him on a mood stabilizer and a neuroleptic.
B goes downhill from the nice but troubled 10 year old. By in large, all the adults - his mother and all the myriad of doctors - have been unable to help him. He got back home, but he was too disturbed. He seriously hurt someone and set fires that could have hurt people. He's got possible autistic traits that no one seems to have acknowledged or tried to understand (he had speech delay, he didn't like change, he avoided eye contact and he spoke in a monotone). He no longer reaches out to people like he used to - presumably he's learnt it doesn't help. He's probably been badly damaged by the long-term institutionalization he's gone through. Just about nothing's gone right for him, but at least he didn't get a jail sentence (after all that institutionalization, jail would not have helped at all). Those new meds probably won't help - none of the others did. I don't know if anything can help him now, it's pretty late.
So what's the good news?

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Monday, April 21, 2008

Tagging-Type Things

I've been tagged with both a meme and a blog award. Here's the award thingy:

The meme is several categories of 'five things' about myself.
5 things found in your bag:
I don't have one. Some things I've been carrying around lately, however, are:
* A big fat German-English/English-German dictionary
* A printout of Hans Asperger's original article
* A little notebook with an attached pen, mostly containing translations of parts of Asperger's article (using Babelfish and the above-mentioned dictionary)
* A tenth of a yarn blanket, attached to a ball of yarn and a crochet hook
* The Saskatchewan Driver's Handbook - I want my license so I can get this one job in which you look after a developmentally disabled adult during the day, so that after graduation they still have something to keep them busy
None of these are currently with me, however.
5 Favorite things in your room:
I don't exactly have a room anymore, either. I've been sleeping on the couch for several years now. By my couch, my favorite things are:
* Whichever book I'm currently using for bedtime reading - right now, it's Lord of the Silent Kingdom.
* My binders, containing photocopies and printouts of disability and disability rights stuff. There is also a large tupperware container filled with printouts etc, and many strewn on the floor getting clawed by my elderly cat when he really wants to be fed.
* My super-soft blanket. It's not actually warm enough most of the time, so I have it underneath my other blanket. The weight of that blanket also feels nice, it's two layers with stuffing in the middle (can't remember what that's called).
* One of our two cat food bowls is there - I like it mainly because it attracts cats, and then I can pet them as they eat or they decide to cuddle me, since they're there anyway.
* The above-mentioned things I carry around get placed there when I sleep.
* Can't think of anything else. There's a second couch, a stereo, a lamp, etc, but none of them are special to me. Maybe the room itself? I feel safe there, like I can monitor everything in the house while still being a bit out of the way.
5 things you have always wanted to do:
* Turn into a cat. I don't think I'd want to be a cat full-time, but I really want to experience it sometime.
* Just exist, without feeling the need to do anything.
* Be younger - I think ever since I was about 7 or so, I've been wanting to be younger. In a decade or so, it'll be normal (not really, because I want to be a little kid).
* Be a publisher author - technically, I've achieved this already, because I entered a story into a contest and got accepted (will post links once I have them). But I want a full-length book published, and preferably more than one.
* Have a child, especially an autistic child.
5 things you are currently into:
* Playing games on Newgrounds or Kongregate, usually puzzle games, though some of the strategy/defense ones I like as well.
* Researching the history of autism and childhood schizophrenia - as you may have guessed from some of my recent posts.
* Crocheting (see my list of things I carry around).
* Playing Rogue, an old DOS adventure game.
* Petting cats - I've always been into petting cats.
Both of these things require tagging someone, but I don't have the spoons (or thermals) for tagging people. So, for the meme, tag yourself by commenting stating that you want to do it. For the award, I'm not sure. Maybe I'll hand out the award to the best contributions to the Disability Blog Carnival I'm hosting here.

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Monday, April 14, 2008

Post-Psychotic PTSD

I just found an interesting article here. I can't read the full text, but here's the abstract:

"This paper examines the aetiology of postpsychotic posttraumatic stress disorder (PP/PTSD) symptoms in a sample of participants who had been hospitalized following a psychotic episode. Forty two people hospitalized for a psychotic illness were interviewed during recovery to investigate whether a psychotic episode was associated with PTSD symptomatology. All participants found psychosis and hospitalization highly distressing. PP/PTSD symptoms were not associated with demographic factors, previous trauma, treatment, or insight. The PP/PTSD group reported more distress and intrusive memories associated with illness and treatment experiences and had higher scores for anxiety and dissociative symptoms. The development of PP/PTSD phenomenology was associated with the psychological distress of the experience."

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Tuesday, March 18, 2008

email to schizophrenia digest

I recently e-mailed the following to the schizophrenia digest 'Ask the Doctor' column:

To Dr Bob,
Awhile back I read the book I’m Not Sick, I Don’t Need Help! My question is how to distinguish lack of insight into their own condition from simply disagreeing with their psychiatrist. For example, as an autistic person, I have often heard accounts of adult autistic people being misdiagnosed as schizophrenic and given inappropriate treatment as a result. Many of these people are aware that the diagnosis doesn’t fit and the treatment isn’t helping. Even when accurately diagnosed, some psychiatric patients may not be helped by the usual treatment, may feel that the drawbacks of the treatment outweigh the benefit, or may have different goals for treatment than the psychiatrist. How do you decide who is right when the patient and the psychiatrist disagree?

I'd really like to know his answer, but even more so I want to raise the question.

PS: I just added links to my favorite blogs. Note that there's actually a curebie autistic among them - I don't agree with many of her statements, but she's very interesting to read and discuss with.

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Tuesday, February 12, 2008

Madness or Early Death

[Warning: plot spoiler. I can't think of any way to get my point across without giving away the ending of this book.]
I recently got a book called Magic or Madness by Justine Larbalestier. In this story, a girl, Reason Cansino, was living with her mother Sarafina. They were constantly on the run from Sarafina's mother Esmerelda, who according to Sarafina tortured and killed animals and babies in order to do nonexistant magic. Then, when Sarafina has a mental breakdown, Reason is sent to live with her grandmother.
In the course of the book, Reason discovers that magic is real, and that she has magic. If she doesn't use her magic, she will eventually go crazy like her mother and her friend Tom's mother. However, the more magic she uses, the shorter her life expectancy. On a monument to her family, the women listed died at 18, 20, 21, 14, 5, 19, 20, 25, 12, 16, 27, 20 and 48 years old.
The 'madness' that comes from not doing magic in this stories sounds somewhat like schizophrenia. Both Sarafina and Tom's mother tried to hurt themselves and/or others in the episodes that resulted in hospitalization. Tom describes his mother's episode as such:

"'Did she hurt you badly?' asked Reason. 'When she tried to kill you?' She looked concerned, which made Tom squirm. He didn't much enjoy people feeling sorry for him.
'No, Dad got there first. She was waving a knife around saying that she'd kill us. She cut Cathy [his sister], but Dad reckons it was an accident. Cath's got a scar on her shoulder, it's tiny, but.'"

Earlier, he says about her:

"She kept trying to kill herself. Then one time when I was little, she tried to kill me and Cathy too. So she's in Kalder Park now... Mum would never take her meds, ... She thinks they put devils in her head."

Sarafina, too, had had multiple episodes before being hospitalized:

"Sarafina talked to people who weren't there. She insisted we walk in straight lines, for days at a time. Sometimes she got confused, wasn't sure where or who she was. Then I would lead her back to the hotel room or caravan or campsite - wherever it was we were staying - and explain where we were and why and give Sarafina a mathematical or logical problem to solve. She always could. Solving the problem would bring her back. Her episodes never lasted long, and until Dubbo she'd never been scary mad."

In the hospital when Reason visited, Sarafina kept on talking about her mother and acting as if she couldn't hear Reason's replies unless they fit what she wanted to discuss. She didn't give sufficient context for Reason to understand her, so that when she gave Reason directions to find a dead cat hidden in Esmerelda's cellar, Reason thought she was discussing a person. Then Sarafina said "It's not too bad, ... Being insane. It's not too bad at all. There are worse things. It's pretty here."
After thinking about this book, I wondered why anyone would use magic at all. Though clearly the mental illness that results from not using magic is unpleasant, it's clearly better than dying in your teens or twenties. Even the length of time before Sarafina had her breakdown was longer than that, so if you treated mental illness as equivalent to death Sarafina was likely still better off. And as she states, mental illness is not constant unending suffering. She clearly felt it was better than death.
The only way they could justify choosing magic and early death over mental illness is if they view being mentally ill as worse than death. This is an attitude which is not only wrong but very dangerous, because a logical conclusion of the 'better dead than disabled' view is that killing disabled people does them a favour.

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