Comments on Young Children and Antipsychotics

John M. Grohol of World of Psychology has a very interesting article about prescribing atypical antipsychotics to children under age six. The take-home message from the article is:

After carefully reviewing the limited amount of research in this area, Psych Central recommends that parents should never accept an atypical antipsychotic medication prescription for a child age 5 or younger. If your doctor makes such a prescription, you should (a) look for another doctor and (b) consider filing a complaint with your state’s medical board against the doctor.

Grohol explains about the lack of research on antipsychotics for young children. What research has been done on children under age thirteen, is usually not longitudinal. I find it astonishing, in fact, that drugs get approved by the FDA after very short-term trials. Abilify was approved for autistic irritability in children age six to seventeen after two brief (8- to 12-week) trials found it beat placebo. The reality is that these children will not take Abilify for two or three momths, but probably for several years, unless serious side effects develop. Since drugs are regularly a substitute for proper behavioral and supportive intervention, they remain the only “solution” to the problem.

In the case of the child discussed in this blog post, there wasn’t even a brain disorder – or only a relatively mild one that shouldn’t be treated with antipsychotics, ie. attention deficit disorder – prior to the prescription of Risperdal. This child did not have bipolar disorder or autism. This child was having tantrums due to his stressful family situation, and it took involvement from a supporitive professional to find that out. (Of course, as I have said a million times, autistics and people with bipolar disorder can also have meltdowns due to unsuitable circumstances, and meds are not the solution then, either.) Young Kyle was medicated for all the wrong reasons, and who knows what brain damage Risperdal may’ve done?

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Increasing Numbers of Children Take Antipsychotics

In the Netherlands, between 2008 and 2009, the number of children taking antipsychotics increased by 14%, according to a Dutch news report. The main reason children take antipsychotics, particularly Risperdal, is autistic irritability.

The problem, according to a child psychiatrist cited in the article, is not that these children are put on these drugs in the first place. Usually, this happens during crisis situations, when the only alternative would be admission to a psychiatric hospital. However, when these children are stabilized on Risperdal or a similar drug, behavioral intervention and parent support should start to enhance the family’s and child’s coping strategies. Then, children should be taken off antipsythocis as soon as possible to prevent serious side effects such as weight gain.

As a person who takes an antipsychotic, I agree to some extent. I agree that antipsychotics are no substitute for proper support, but I have had enough experience of long-term insufficient support to know that I, for one, would not quit my medication anytime soon. For children, perhaps better services are available. If this is the case, indeed, families should be steered towards services rather than having their kids on antipsychotics long-term. But I still wonder whether the current services will suffice for the most challenging autistic children and adults. This is not advocating more medicating, but even better services.

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This Is News?: Antipsychotics Cause Weight Gain In Children

For the sake of eliciting an “Oh, duh!” with most of my readers, research just found that antipsychotics cause weight gain in children. In fact, all four drugs tested – Risperdal, Seroquel, Zyprexa and Abilify – cause significant weight gain within the first three months of use, sometimes up to 15% of the child’s former weight.

This is quite a disturbing finding, because unhealthful weight gain is at least as dangerous for children as it is for adults. You don’t want to put children at significantly increased risk of diabetes and heart disease.

Of course, however, I am not opposed to the use of antipsychotics. I’m also not opposed by definition to their use in children. However, extreme caution should be taken when prescribing these powerful drugs, and I’m a little worried that too many children are prescribed antipsychotics for convenience rather than as genuine treatment for their mental illness.

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Not a Substitute for Proper Care?

In their book chapter on psychopharmacology in a Dutch book on care for people with intellectual disabilities, Scheers and Minderaa (1997), write the following about medication for use on people with pervasive developmental disorders:

It also seems to make little sense to to provide medication when a few basic provisions of shelter and support have not been met (…). When these are optimalized and there are strong reasons to prescribe medication, it makes sense to let the choice of substance depend on the particular problem. (P. 401, translation mine)

I have always held this rule in mind when considering medication, but nonetheless ignored it twice, the first time in 2007 and the second time, fully aware, just yesterday. I had my dose of Abilify increased from 5mg to 10mg.

Unlike last February, when I went on the Abilify, this time there are obvious environmental circumstances that create my irritability and anxiety. There is construction going on on institution gorunds, and my ward’s staff is chronically unavailable or absent. Both of these factors cause me extreme anxiety, but neither can be changed, and I cannot get a transfer to a ward off institution grounds or with more staffing, either. The staff here try their best to make me feel safe, but they have only so much they can do. So, is this “optimalized” care? I’d think not. But can it be?

In a sense, I feel bad having consented to medication as a subtitute for proper support. On the other hand, I will not be able to get this proper support whether I go on meds or not. The same goes for undoubtedly a large number of other autistics, who would be able to function better if they were provided with adequate care. I, as an autistic advocate, fight for this adequate care. As an individual with autism, I keep running into brick walls.

Reference

Scheers TFH, Minderaa RB (1997), Het gebruik van psychofarmaca. In: Van Gemert GH, Minderaa RB (eds.), Zorg voor mensen met een verstandelijke handicap. Assen, Netherlands: Van Gorcum & Comp.

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So Why Did I Go on Medication?

On a Dutch recovery website, the theme this week/month/whatever is “medication”. Besides that, my May 13 post led to some convesation on why people take or don’t take medication. Normally, I tackle this subject in July 25, as I remember the beginning of my medication experiment in 2007, but since I’m on meds again, I might just as well talk about the matter now.

As those who read my blog in previous years will know, I was on Risperdal for 2 1/2 months in 2007, and that was not a good experience. The fact that I’d not been taken seriously about side effects, had seen meds as the only solution to my irritability in the absence of other coping skills, and had felt that meds were pushed as an excuse to get me into life circumstances that were unrealistic for me, all made me rather wary of medication from the moment I was out of the worst of my despair of late 2007 on. The fact that medication was regularly used as a fake option to treat problems I didn’t have when I was at the locked ward, didn’t make it better. So, why did I go back on medication earlier this year?

In the winter of 2009/2010, I was being in what could’ve been the worst state of mind I’d been in since my crisis of 2007. Every sensory stimulus set off a really bad reaction, I was constantly on the edge of melting down, and I was constantly anxious for reasons I didn’t know. People tried to find out what on the ward was causing this, and there were some things, such as some understaffing. Then again, it wasn’t worse than it had been before, and my irritability was certainly worse. My sensory distortions and anxiety were also worse than I’d ever had them before – ever, including in 2007.

I’d considered asking about medication sometimes, even asking about going back on Risperdal despite its side effects and lack of positive effects in 2007. Maybe it would work this time, I reasoned. But I was too scared to make a fool out of myself by asking a psychiatrist who might not be open to having an autistic on medication – psychiatrists vary in their opinions on that. So I waited till the subject was brought up by my staff.

That happened in late January, 2010. My psychologist had apparently spoken to the psychiatrist about the possibility of getting me on some drug, and she asked me whether I wanted to talk to the psychiatrist about it. I said I did, but I had my reservations. Particularly, I worried that this was some kind of game in order to show me how I was faking symptoms. So I didn’t take any initiative and waited another two weeks, until I ended up in such a bad meltdown that I had to be taken to a locked ward for a time-out. The next day, I tried to make it clear to my psychologist that, while I certainly wanted to improve my behavior and I was desparate about my symptoms, I was out of ideas. She suggested I speak to the psychiatrist again, and I told her I wanted to, but was too scared to take the initiative myself.

Fortunately, when I spoke to the psychiatrist, he already knew about my symptoms, so I didn’t have to explain everything. The psychiatrst seemed to know what he was talking about, and so did the nurse who attended the discussion with me. I was a little scared that the psychiatrist would indeed suggest I go back on Risperdal, but fortunately, that wasn’t what he suggested. He suggested Abilify, which I’d never taken before. After reading up on possible effects and side effects, I decided to try the drug. I’ve been on it for nearly three months now and am content.

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Aripiprazole Update

I’ve been taking aripiprazole, 5mg as it turned out, for 2 1/2 weeks now. At first, I believed the drug would not be effective, for the simple reason that I wasn’t having any side effects. That is, I did feel sleepy somewhat earlier than usual the first few days, but I’m not sure whether that’s due to the medication, as I take it in the morning and never felt daytime drowsiness. I also felt a tiny bit physically restless, particularly at night, but I’ve had that for a while before starting medication, so I’m not certain whether that’s a side effect, either.

I started feeling positive effects a few days to a week into using the aripiprazole. It wasn’t really like a snapping moment, but just that I gradually noticed I was more able to tolerate stimuli that used to overload me and send me into meltdown. I do have to watch that I do not cross my limits, since of course I’m not taking medication so that I can go just a little further before going into meltdown.

The staff are also noticing that I seem somewhat calmer, and for this time, I do not feel that they are imposing wishful thinking on me, since I indeed do feel calmer. I try to make it a big point that I am not accepting being “tested”, in the sense that, oh well, I’m doing better and attribute this (in part) to medication, but that is no reason to see if you can push me over my limits a little. This is one of the reasons I have trouble admitting I am doing better: it might lead the staff to be less supportive. My psychologist says this is indeed an unintended possibility, but that she is making it clear that the staff should make sure not to push me over my limits.

Now I’m still holding reservations, in that medication effects can always wear off and, besides, it could be by chance that I’ve had a few good weeks, but so far, this seems promising.

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Going on an Antipsychotic for Irritability Again

This is just a note to say that I will be going back on an antipsychotic for my irritability and oversensitivity. This time, it will be aripiprazole (Abilify) 7.5mg. The psychiaatrist says I should be seeing results within four weeks, so I will be taking the drug for a while and hope that it works. Of course I may have disagreements with the staff about effectiveness, but we did get it clear that, while trying to reason is fine, I am ultimately the one who decides whether I take this drug or not. (Of course since I am a voluntary patient, that is my legal right already, but it is good to communicate these matters anyway.) I do trust my current staff more than I did the people involved in 2007 to make a reasoned assessment of whether they think the drug is effective, in the sense that they know me before I go on meds, so they aren’t motivated by fear of what might happen if I quit a med they’ve never seen me without. Conversely, not having a move on the way anytime soon gives me some more capacity to evaluate effectiveness, too, since it isn’t like, if the Abilify doesn’t work, it is just as possible that my stress level increased a million times over the course of a week and, if it does work, it is not like I just got it a lot easier through a huge change in external circumstances (not that I see what huge change in external circumstances could make it magically easier for me, but well). I do of course hope that I made it clear enough that my going on medication is no excuse to make life a hell of a lot tougher for me, anyway.

I am not reading any more leaflets of millions of side effects, because all the sources I’ve checked out disagree on relative risks, and I am already well aware of all the different side effects that can come with antipsychotics, and relative risk doesn’t say all that much with me anyway. The psychiatrist did say that it is possible I will be having some movement effects, which I have never had before on any of the other neuroleptics I took (but then again, one was obviously atypical and the other a low-potency classic), so I will have to see if they pop up and, if so, whether they are really as horrible as I’ve read some can be.

We did have some discussion on the time of the day I would have to take my medication. At first, the psychiatrist thought it best if I took it before bedtime, because of something about it not interfering during the day (so am I not supposed to benefit from it during the day?). That didn’t sit all that well with me given the risk of physical and mental restlessness (and the fact that I’d much rather experience any side effect during the day anyway), but I didn’t point that out. Eventually, I got my way through some really hard-to-follow discourse of thought from the psychiatrist, and I can now take it in the morning. That will come down to around 10:30 AM since I already take medication then. He pointed out that it didn’t really matter if I was not always on time with my meds, but I do have to ask the staff to remind me, since I’m not all that good with remembering to take my meds. Do wonder how I managed that back in 2007, when I to my knowledge never missed a single dose of Risperdal, except when I was deliberately non-compliant, of course, which I have no intention of being again.

Ultimately, if the drug is not effective or is causing me intolerable side effects, I will feed it to the gull with carob-induced autism to see if it decreases his irritability. If natural health products can solve the problems created by Big, Evil Pharma, I would hypothetize it goes the other way around, too. Oh, before the Animal Liberation Front comes out to get me, that was a joke.

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Anti-Psychotics Change Metabolism

Well, I’ve known this forever, but according to this news story, it’s fairly ground-breaking research suggesting this: atypical anti-psychotics change metabolism. In lab rats given olanzapine (Zyprexa), abdominal fat and blood glucose were significantly increased compared to rats given the classic anti-psychotic haloperidol (Haldol) and rats who did not receive either drug. These are both symptoms of metabolic syndrome, which is a risk factor for heart disease and type 2 diabetes. So what did you say, newer anti-psychotics have fewer side effects? A smaller risk of extrapyramidal effects, maybe – and note that a smaller risk does not mean no risk -, but not less serious side effects. Besides, these measures were found after the rats had been exposed to the drug for a period of weeks. Several weeks to months is also the usual time period for evaluating effects on humans. However, I may have stopped Risperdal after 2 1/2 months, but most people are on atypical anti-psychotics for years, so I assume effects would be even worse over a longer time period.

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First Few Days without Risperdal

The first few days without risperdal have not been too well, but not extremely bad either. I felt stressed every day, but it was not very much out of proportion, relatively speaking. In this sense, it’s hard that I didn’t keep track of myself re freaking out before I went off risperdal, because it makes it hard to compare notes. I mean, the first week with 0.5mg risperdal went very well, relatively speaking, so it’s no wonder that I freaked out a few times this week.

I also had a brief discussion about freaking out with Adrie, one of my support workers, yesterday. She thinks there is a difference between the moments when I freak out to the point of unreachability, and those situations when I panic but I’ll still listen to other people. The latter was what’s been happening both last Tuesday when Adrie was with me and yesterday at Apeldoorn station before going on the train back to Nijmegen from a discussion at the mental health center. This is usually when I don’t know what to do because living here is just too hard. If only a medication helped me solve that!

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I’m off Risperdal as of Today

Well, as of today, I’m officially off risperdal. I called the doctor’s assistant today. Since it’s been going quite well except for last Thursday, and I wasn’t stopping risperdal cause I didn’t need it but cause it wasn’t effective, the doctor agreed to have me quit taking it. Now, I’ll have to see how things go. The first few days are crucial, as withdrawal symptoms generally occur a few days after stopping risperdal. Well, we’ll see.

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