Lupron Used as Autism Treatment

I’ve known this forever, but it is still shocking to read about it: Lupron is speculated as treatment for autism. Lupron is a drug that causes the body to quit making testosterone. It is indicated for precocious puberty, but it has very serious side effects.

The logic seems to go like this: autism is, of course, caused by mercury poisoning, and Lupron removes mercury. Neither is true. Lupron is also thought to help with excessive or inappropriate sexual behavior in autistics. We never hear what “excessive” or “inappropriate” is. Besides, do you want to use chemical castration just because your child masturbates in public? What about behavioral interventions? And even if those don’t work, I would think a sensible person would still consider the inappropriate behavior less harmful than potential heart disease and stunted growth. I’m presuming here that impotence is essentially what the parents who try Lurpon want their children to achieve. After all, total lack of sexual ability is still better than inappropriate masturbation. I already disagree there.

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Support Site Used for Drug Marketing

Natasha Singer at the New York Times writes an interesting article on patient social networking sites like PatientsLikeMe, and the way they’re used to collect individual health data fro direct-to-consumer drug marketing.

PatientsLikeMe is a community for people with neurological diseases such as epilepsy and multiple sclerosis, where they can share their experiences with various drug treatments with othrs. People can create extensive profiles, which are useful for finding people with similar characteristics, so that you can compare notes on what works and what doesn’t. However, this same information can be analyzed by pharmaceutal companies, and PatientsLikeMe actually actively promotes this. It is not its intention that pharma companies will market to individual patients, since their goal is that companies learn from patients rather than the other way around, but of course direct-to-patient marketing does happen as a result.

Of course, one’d say, if you read the privacy policy, you’d know what happens to your information when shared on PatientsLikeMe. PatientsLikeMe, after all, is very honest about its sharing with third parties. This is one more reminder to always read privacy policies, but I know that many people don’t. That way, medical information could be distributed to third parties and used for marketing purposes without informed consent, when all the patients thought they were doing, is sharing support with other patients.

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Should Mental Health Professionals Google Their Clients?

Recently, some discussion has sprung up in the Netherlands around whether psychiatrists or psychologists should google their patients. The Dutch Association of Psychiatry (NVVP) says that information that has been put on the Internet, is public, so anyone should be able to view it, including psychiatrists. On the other hand, the Netherlands Institute for Psychologists (NIP) disapproves of the googling of patients by psychologists, because it can impact the treatment relationship negatively. It is also reasoned that the information relevan to treatment should come from the patient directly.

That is where it gets a little troubling: some patients simply do not or cannot give the information relevant to their treatment. Googling without consent is, in my opinion, not productive in this case, but information gained elsewhere, such as online, may sometimes help in this case. For one thing, the fact that my high school tutor read my online journal back in 2004 opened the doors to my eventually seeking help for my issues. I would never have been able to communicate these issues any other way.

On the other hand, does the end justify the means? Six years later, I feel that both of us overstepped our boundaries by sharing my online journal, because that way, he was dragged into emotional issues no teacher should have to help a student deal with. To be specific, he was the first who knew that I have insiders. It was not his job to deal with that, and the fact that he tried anyway, had some negative consequences. Maybe mental health professionls have a broader array of issues that is their job to help clients deal with, but still, boundaries can be overstepped here.

Currently, I give professionals consent to read my blog. I most likely wouldn’t have odne so if I’d still written as personal a journal as I did in 2004, because of the fear that we would again overstep our boundaries. Then again, the fact that the information that is on the Internet, is public, is the reason I avoid writing highly personal things on the Internet these days. In so far, I agree with the NVVP. However, I think most people are more careful, but a few are less careful than I am, and people with mental illness are especially vulnerable in this respect.

A last issue is of course the fact that the information people put online, no matter how careful or careless they are, was not intended fo rprofessionals to read, and may therefore be misinterpreted. Information may also be outdated or inaccurate, and most likely will be irrelevant to treatment. Is it ethical for a mental health professional to know about a patient’s sex life, what they ate for lunch today, or what they just spent E10,000 on, when there are no other indications for sexual issues, eating disorders, or a spending problem?

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Oregon Governor Vetoes Bill Granting Psychologists Prescription Privileges

There is some good news for people, like me, who feel strongly about the protection of patients from unwarranted drug prescriptions: according to Lunatic Fringe, Oregon governor Kulogonski vetoed a bill that would allow psychologists to prescribe psychiatric drugs. The bill would’ve allowed clinical psychologists to prescribe drugs if they cooperated with a psychiatrist. It did not specify how far this cooperation had to go. The reasoning was that there is a shortage of psychiatrists in Oregon. Now that may be true, but it does not mean psychologists suddenly got the training required to prescribe medications. A basic understanding of psychopharmacology, which psychologists generally do have – at least if they were trained not too long ago -, is simply not enough to monitor the medical effects of these drugs. Not every doctor is a medical doctor, after all, even if they trained in an allied profession.

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Should Psychiatrists “Diagnose” Public Figures in the Media?

I read in a Dutch newspaper that Bram Bakker, M.D., a well-known psychiatrist, was criticized by the Dutch Association for Psychiatry for having commented on Dirk Scheringa, director of a recently collapsed bank, in a TV show. The association has a position against psychiatrists “diagnosing” individuals they haven’t assessed via the media. I can see the point, even though it won’t even get you officially warned by the medical malpractice board if you make an actual, clinical diagnosis: when political murderer Volkert van der G. complained about another psychiatrist having “diagnosed” him with Asperger’s via the media in 2003, he was dismissed precisely because he wasn’t in a patient-physician relationship with the man. Even so, of course the association can decide differently from the (not affiliated with any association, established by the government) board, and I think they have good reason to disagree. After all, it is quite likely that the board’s reason for dismissing Van der G. was not anything related to the content of the case at all, but the simple fact that their legal responsibility lies only with individual healthcare provision. A professional association, however, is concerned with the wider reputation of its membership. I can see how this could be harmed when psychiatrists make seemingly random diagnoses via the media. Professional associations have to set clear standards on what is and isn’t acceptable – and I think this needs more attention with the increasing popularity of social media. Now, psychiatrists could theoretically not just “diagnose” public figures, but anyone with an active account on a social media site. Twitagnosis? It already exists as an obviously (I might hope) unscientific tool in the form of TweetPsych, condemned by pretty much every major psychology blogger I know, but could it expand into actual doctors making semi-official “diagnoses” via social media?

But this is not what Dr. Bakker did. He did not actually “diagnose” Scheringa medically. Rather, he commented on his behavior, in not so nuanced terms: he said that Scheringa is a “bastard who presents himself as victim” and “he gives himself the role of an underdog or calimero”. These are opinions I think quite a few people hold – I, for one, do not -, and no-one would criticize them for saying so on TV. But then again, no-one would be asking them for their opinion, acknowledging that they’re a well-known psychiatrist. If Bakker were interviewed as a random passer-by in a street poll, I assume no professional organization would’ve complained. The problem is, I guess, that the association fears that Bakker’s opinion is taken as an expert judgment that is supposedly based on scientific knowledge of human behavior. This is, of course, not the case: Bakker may not be using pseudoscientific psychology dictionaries to place Scheringa’s behavior, like TweetPsych does with your tweets, but he isn’t using scientifically-sound methods, either. I can see that it harms the profession of psychiatry if people erroneously believe that he “must know”, since he’s a psychiatrist. Now people will get that belief anyway even if he speaks up at a party – and I might hope that isn’t the association’s business -, but at least he then wouldn’t be reinforcing it in mass media.

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“Stop Wasting Taxpayer Money, Pop That Pill!”

It’s July 25 today. I at this point don’t yet have this as a traditional write-about-a-particular-topic day, but I could turn it into one starting now. Two years ago, after all, I started on my only daily psychiatric drug, Risperdal. I wrote about prescribing psychiatric drugs for environmental stress on my Dutch healthcare blog last year, but that blog died a slow death from the May/June computer crash, so I guess I’d take the theme over to here.

When I reread my posts from the time when I was on Risperdal, it strikes me that I registered symptoms, drug effects and side effects, doctor and staff hypotheses about the relation between these, without any consideration for the context in which all of this was occurring. It’s interesting to note that I wrote on July 27: My goodness, it’s July 27 and I’ve not done actual Nijmegen updating in ages! Remember, I was at the time in such stress from all that happened around my move to Nijmegen that I had to be put on an antipsychotic to prevent me from totally falling apart, and I wasn’t writing about Nijmegen.

I reread my posts in which I considered whether I’d betray my inner neurodiversity activist by going on an antipsychotic, and I decided it was fine to go on it if I had been able to make an informed decision. I criticized the doctor’s informing me, which was way better than any drug information I ever received from any doctor I’ve ever met since. I felt that, if most adult autistics on the Dutch autism forum didn’t experience the dramatic side effects APANA warns for, it probably wasn’t as bad a drug as Amanda Baggs et al. would want me to believe. I knew that “behavior control” wasn’t an appropriate reason for drugs, and I vowed to go off Risperdal the safe way as soon as possible if I started feeling too drugged to react to overload. But I wasn’t having too bad side effects, slight positive effects at first, and didn’t feel like I was chemically restrained. And off I went, to “that city down south” (one staff consistently asked whether I meant Mabella). And I was still stressed, and most tricks learned in treatment didn’t work, and all I knew to do about it in my new environment, was to take my pills.

Did I actually know, at the time, that this whole mission was ridiculous? My parents say I should’ve known. They refer to little things like too little mobility training (the most one can get) and one inaccessible college course, but there were a number of little things piling up at the time. There were big things as well – my inability to cope with having no-one available should I need help outside of fixed hours, for example. I am not sure whether I knew about these problems at the time. Probably I did to some extent, and so did the training home staff, but none of us could or would acknowledge them. And by July 25, what if I’d told the prescribing doctor, my treating nurse, or the training home staff: “This is a mission impossible that you guys sent me onto. I won’t look to Big Pharma to solve a problem it didn’t create.” Rather, I decided that my symptoms were bad enough to take meds for, the effects the doctor hoped Risperdal to have sounded like they could alleviate some of my symptoms, and my side effects would not be too bad.

Similarly, in late September, when I decided to quit Risperdal, I didn’t think of the reason I had to be on it. I quit because the drug wasn’t doing anything good for me anymore and I was still having slight side effects. Actually, when I was heading towards my November 2, 2007 crisis, I contemplated whether the whole thing could be belated withdrawal symptoms. One can never be completely sure, but I gather from the fact that the two psych residents who ever discussed the matter briefly with me, both tried to forget about it as soon as possible afterwards, that psychiatry has consented that this is unlikely.

Of course, the question remains, what would’ve happened if I had actually refused medication because this is not in line with consensual autism intervention at this time? I may not be up-to-date, but the last time I was reading scientific papers, the consensus was that psychiatric medications should only be used for autism if appropriate support doesn’t work and the person is still having significant problems. Unless “appropriate support” is meant to be ABA, this should sound like a pleasant song to neurodiversity activists. But not to funding agencies. And this is what I was wanting to write about today: an 1mg Risperdal tablet cost around E1.50 in 2007 (risperidone was still on patent then, I guess the generic may be cheaper). That is far cheaper than my psychiatric institution bed.

Of course, it is true that the drug wasn’t effective – I was still having extreme meltdowns – when I quit, so there is (most likely) no need to worry for me about the possibility that a E1.50 pill might just have saved the Dutch taxpayers some money that is now spent on my reso ward bed. But what if it did work like this? I sometimes wonder really why the people at my former ward didn’t just put some pills into me and discharge me after a week. Maybe they knew that there is no primary pharmacological treatment for people with my diagnosis. As I said, last time I looked this was true, but I see quite a few people on boards talking about drugs as if they are a primary treatment for Asperger’s Syndrome. For those who follow Baron-Cohen’s definition and consider depression to be a required part of Asperger’s – in which case I wouldn’t have it -, this may be true, but what about the many people I know who, indeed, go on antipsychotics to be able to “handle more”? My alarm bells go off big time when I read such posts, because my experience is that an antipsychotic didn’t help me with that and if it did, it’d probably be just by making me duller. But then again, we live in a time of economic crisis, when healthcare is not the thing taxpayers would like to spend their money on, especially if it’s someone else’s healthcare. So maybe one should look to the cheapest solution, whether that is the most effective or desirable one or not? In concreto, all pop your E1.50 pills and get out of your E200+ institution placements, guys. Not saying I agree with this, but I sometimes wonder.

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Thoughts on the “Ashley Treatment”

I’ve been putting off writing about the “Ashley treatment” – a case of a nine-year-old, severely cognitively and physically disabled girl whose parents put her on hormone treatment to attenuate her growth – for a few days, because I don’t want to do another careless “this is child abuse” rant. Though I do oppose the treatment, I think it’s more complicated than simply being for the parents’ convenience. If the argument were simply that the parents wanted a child-sized adult kid, I think no ethics committee would’ve agreed with it. I read that in previous decades, high oestrogen was given to teenage girls for purely cosmetic reasons, but in this time, I don’t think it would be considered appropriate if the child didn’t consent – or couldn’t consent.

Honestly, I do agree with Ashley’s father that this is something different from a cosmetic procedure or even something for convenience. It’s about parents’ perceived lack of alternatives. Firstly, Ashley was diagnosed with static encephalopathy, a condition assumed not to improve. She currently has the cognitive and physical abilities of a three-month-old at least by measurement with currently used evaluation methods. She cannot move most of her body parts voluntarily, so she requires assistance to change her position – something necessary to prevent infection. She’s not the only person in these circumstances. There are, in fact, quite a few people in this physical condition, with or without intellectual impairment. One major difference between Ashley and the other people I know about, is that those are getting the support they need – Ashley is not. Besides her parents, only her two elderly grandmothers care for her. This could be the parents’ choice, but I assume it’s not if they see it as one of their arguments for the “Ashley treatment”. So one of the problems is the poor or unaffordable support of disabled people in their area or in general.

At first, I was surprised to find a disability rights perspective on the issue mention the “social model”. What did barrier removal have to do with a girl who supposedly wasn’t going to improve anyway? Then I read on and realized that lack of personal care from a good support network (professional or not) is a barrier, too.

It is a barrier not only to Ashley, but to her parents as well. Ashley may have a normal life-span, so how do the parents imagine caring for her when she’s fifty and they are old and probably themselves in poor health? No child-shrinking treatment is going to solve that problem – only good and affordable support is.

There’s another problem, highlighted in the father’s talking about the appendectomy being done: Ashley’s lack of (effective) communication. While I don’t really oppose the appendectomy as such, if it really has no risks, I do wonder what really made this procedure a necessity. The child can’t commnicate when she’s sick. However, an appendix infection is not the only thing that can make a child or adult sick. How are the parents going to tell when Ashley is ill, then? Assuming that there really is no way in which Ashley can, or is ever going to learn to communicate – no-one can tell what the future will hold, but let’s assume that the label of static encephalopathy defines Ashley’s outcome -, it requires constant supervision to make sure she isn’t ill. Are the parents going to watch over their daughter day and night, year after year, for another several decades? And if they don’t or won’t, how do they prevent serious harm to their child? I do believe it ultimately requires more than a child-sized adult and two dedicated parents to care for her for the rest of her life.

I know that some parents see it as their duty to care for their disabled child or to keep him or her out of a nursing home. I know that, if the parents really can’t get any support for Ashley, this is the choice they have. And, while I don’t advocate nursing homes – disabled people should keep out of them as long as possible -, that doesn’t mean parents are required to care for their disabled child (or adult child) – there are other options, or there should be. We’ve seen the numerous cases of murder of the disabled, defended by the fact that the families had no support. The system is failing and should change, and no amount of growth attenuation is going to help that.

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Preemie Outcomes, Ethics and My Own Situation Once Again

I found myself in the middle of another preemie outcomes / ethics discussion again. Maybe I should’ve withdrawn as Helen (the parent of a preemie with severe disabilities, who thinks preemies shouldn’t be kept alive) was trying to spark negativity, as Sarah did, but I just can’t. I wasn’t trying to discredit her; I was trying to be less polarized than what I see. It’s always the negatives, who keep throwing stats of poor quality of life, high incidence of mental heath problems, etc. at us, versus the positives, who keep insisting we’ve survived and succeeded in life cause we didn’t listen to the negatives. I didn’t succeed in life. I still don’t live independently and don’t know if I ever will. I’m in college only part-time and not sure I can keep up. My parents suffered a lot cause of my behavioural problems, that are in part indeed part of what/who I am – though I still hope I can improve. My abilities are better than they were a few years ago, but in a way, my outcome is worse, cause I don’t know what goal I’m trying to pursue, but in any case, it’s most likely at least a little bit less high-achieving than what was expected of me back then, and, at worst, not at all like it.

Yet does that make my quality of life so poor that I’m better off dead? Not when you only look at what *I* think, but there are too many utilitarians in the world. Then the question becomes: am I so useless that I lose my right to life? Might be. I know I’m cyclical in my writing. This was stuff I was majorly troubled with in 2002, and I still am. At the time, there were moments when I had suicidal thoughts – that I fortunately never acted upon – for this very reason: I believed I was too much of a burden to have a right to life. (There were times when I had suicidal thoughts cause I hated my own life, but these were far less serious.) I don’t anymore. This is one sense in which I’ve “grown up”: now I just need to leave whichever place I’m acting badly in. Maybe this wouldn’t apply to a mental institution catering to the behaviourally disturbed, cause they’re supposed to be there for the type of people like me.

There are people on the lists who answer Helen’s negativity by bragging about all their accomplishments. I hate this as much as I hate the negativity itself, because it follows the same plot: preemies should live, cause they will be high achievers, or preemies should die cause they won’t live independently (or some other arbitrary standard). I don’t like to be informed about the high incidence of emotional disturbance among preemies as an argument to build the right to die upon, and I don’t want to hear about people’s college degrees or families or that they were told that they couldn’t ride a bike cause they were blind and they still could (I can’t cause of mild balance problems) to build the right to life upon. If I’m ever going to graduate from college and become a mother, I want to remember that I once was a confused 20-year-old with a lot of emotional problems and behavioural difficulties, and still realize that this is part of me as much as my achievements would be part of me.

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Thoughts on Preemie Ethics and What My Own Ootcome Would Be Considered

I’ve done a lot of reading on NICU ethics lately. As you might know, in the Netherlands preemies born before 25 weeks gestation are generally not resuscitated, cause neonatologists think that the risk of death or survival with severe handicaps is too great. The Rotterdam neonatologist in the article I mentioned on October 2, 2004 said that a brain scan at one day of age says a lot about how a child will do, hence allowing to select more objectively.

However, of course, then it would be withdrawing treatment rather than not initiating it in the first place, which feels more ethically incorrect. In my view, it isn’t more incorrect: what makes the difference is how vital an infant still is. If an infant is moribund in the delivery room and no resuscitation is done, that’s in my view similar to discontinuing ventilation in a moribund infant in the NICU. However, it does make a difference when a child is haemodynamically stable. And that is, of course, where the proposal to assess infants with an MRI, raises ethical concerns: are doctors going to kill an infant cause keeping them alive would be worse? It “feels” worse, and I oppose it anyway cause I don’t feel that disability makes for a good argument for killing, but factually it allows for a more objective selection of those that do well and those that don’t, then simply leaving all 24-weekers to die.

In my reading I also, of course, came across the endless lists of numbers. Long-term outcoems are not oftentimes used as an argument not to treat preemies, but I have very often seen assessments of infants in the NICU or upon discharge. What strikes me, is that there are always three problems documented: lung disease (either as in still needing oxygen after discharge or measured by the time spent on the vent), brain anomalies, and Retinopathy of Prematurity (sometimes, politically correctly or something, called “severe eye conditions”). I did not have lung disease after discharge from the hospital as far as I know, but when I was in the NICU, I had all three. Am I “severely handicapped”? I wouldn’t guess so. Of course I had my hurdles in the first year, and I don’t think my follow-up was quite cool, but I’m not “severely handicapped”. Oh sure, medically I am classified as “handicapped”, don’t know in what degree, but I wouldn’t hope I fall under the “What have we done?” crowd one neonatologist in the newspaper article – by chance, the one who used to treat me back in 1986 -, talked about.

I’m having major difficulties with this grey area between “success story” and “not worth living”, in which I consider myself belonging. I continuously see neonatologists and pediatricians get worried at the number of former preemies who have such and such a condition, that I myself did/do have. The Rotterdam neonatologist in the newspaper article commented about some kids having behaviour difficulties and that being annoying but no reason not to let them live. And my behaviour difficulties haven’t even been identified, even though I think a neonatologist would recognize them cause so did all remedial educationalists in my life, even though I have no diagnosis. And then, I’m also blind, which no-one considers to be a “severe handicap” but which is considered clinically a major disability. Yet I also fall under a category of supposed “success stories”: the Rotterdam neonatologist mentioned that some former preemies have an IQ over 100 and will later go to university. As a person with an IQ quite a bit above 100 and who plans to go to university by September, am I now considered a favourable outcome? It’s that same inevitable generalization made by all too many healthcare professionals: disabilities are incompatible with high intelligence. I sincerely consider myself affected by this mistake: in a highly intelligent person, blindness cannot be denied if the child has only 20/400 vision at best, but behaviour trouble can be ignored with ease. Do I have to, in order to be considered enough of a “success story” according to Dutch neonatological measures? I don’t know, but I cannot do so.

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Reflections on Preemie Ethics

I read an article in the paper about setting a line for whether or not to treat premature babies. There’s this doctor in Rotterdam that wants to look individually rather than setting a strict line, which is the current policy: in the Netherlands, kids born before the 25th or 26th week gestation aren’t treated. I find this to be very rigid, because there are a lot more determiners for how a baby will do, such as birthweight, gender (girls to better than boys) and so on.

Fetter, a neonatologist in Amsterdam who has had thirty years og expereince treating preemies (he worked in Sophia Children’s in Rotterdam when I was born and “has brought me into the world”, as Mum points it), says there should at least be a national policy on whether or not to treat preemies. As another neonatologist says: if this is not in place, parents may insist on treatment “because that’d happen in Rotterdam, also”. Yes, I think there should be national guidelines, but not the rigid ones we have now. A few years ago, there was one hospital in Leiden that treated babies born at 24 weeks, but it quit that policy, because according to their research, many kids would be severely disabled as they grew up. Fetter also says in the article that there are these grown-up preemies he meets now of which he really thinks: “What have we done?!”

Many very premature kids indeed get behaviour, learning or social problems later in life. And according to research, at least that’s what I read in the article, 25% have “severe disabilities”. What’s a severe disability, I wonder. But, just because this is the outcome of research, doesn’t mean we need to set a rigid line at 25 or 26 weeks gestation. Probably, these severely disabled children had an extremely low birthweight, and may have had additional problems and complications. As I said, gestational age isn’t the sole determinr of one’s outcome.

One may further question what’s considered a too great risk. I don’t agree with the dominating opinion in America to treat virtually all preemies from a gestational age of 22 weeks on, because not all outcomes are worth living. But is it a problem that a child may have behaviour problems, or a learning disability. And if it is, is it a problem to the extent that we don’t want to treat these preemies? I don’t think so. And when a child reallly risks severe disabilities – what are “severe disabilities”, I wonder -, it depends on many, many factors.

At the time when I was born, the Dutch folks mostly didn’t treat babies born before the 26th gestational week. I was, according to the doctors, born at 26 weeks and 4 days, and had a birthweight of 850 grammes (1lb, 14oz). I later found out that I was probably born at a younger gestational age – I caclulated 25 weeks and 2 days. I felt pretty bad when I found out about the “mistake”, because as I reasoned, I didn’t have the right to live, for I was born too prematurely. If one may believe one of the neonatologist’s statements in the article, the line’s indeed that strict as to tell parents that their preemies is too young to be treated. I find that really so reidculous!

I think that the Rotterdam neonatoligist’s point of looking at the individual rather than at strict lines is much better. If a child wants to live, one can determine that within a few days after birth. And outcomes are never fully predictable: what one can see at one day, two weeks or even four years of age may change as the child grows older, but it is better to try to “select” those babies that have a great risk for disability (based on their gestational age, birthweight, how welll they’re developed, etc.) than to let children born at a certain gestational age live, while they may have a greater risk for complications than younger preemies who are left to die.

Astrid

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