How heritable is schizophrenia?
January 8, 2007 7:45 AM   Subscribe

How heritable is schizophrenia?

An acquaintance of mine is planning to adopt, and has a possible match with a birthmother. The risk factors are really good--the birthmother hasn't used drugs or alcohol, for instance. But the birthfather is schizophrenic. She is wondering about the risk that the baby will turn out to be schizophrenic as well. I've googled and found lots of technical medical articles I can't easily wade through, and this link, which suggests the risk is about 10%.

I'd love to hear from experts and the experienced. If you had a friend in my acquaintance's situation, what would you tell her about the risks? About treatment? About variations in the disease?
posted by not that girl to Science & Nature (27 answers total) 3 users marked this as a favorite
Schizophrenia is hereditary to some degree. NIMH also says 10%. I think beyond that point whether it's 10% or 40% is pretty immaterial Schizophrenia runs in my family in a pretty bad way, so my opinion is skewed to the "oh my god" direction more perhaps than most people.

If the birth father is diagnosed schizophrenic then your friend will have to face the chance that she will be raising a schizophrenic child or more likely a child that will become schizophrenic in his or her teens or 20s. Some people are exceptional at caring for people with mental illnesses and some forms of schizophrenia are mid and/or respond quite well to medication (which you might want to check into regarding the birth father). However some do not and there is a chance, however slim, that the child will never be able to livew independently or, more importantly, free from fear, halucinations and/or delusions.

Schizophrenia is also poorly understood (or incorrectly understood, see the many people who use it as a byword for split personality) which means getting good diagnoses and support is more difficult than for other types of ilnesses both mental and physical.

Then again, nothing might be wrong, but it's a risk and a not insignificant one. I know there are other MeFites with direct experience with schizophrenic family members (mine is less so) and hopefully they will chime in.
posted by jessamyn at 8:07 AM on January 8, 2007

Semi-personal experience - my husband's great-grandmother had schizophrenia and was institutionalized most of her adult life. None of her 4 children did. Only one of her 7 grandchildren did. None of her 12 great-grandchildren got it. I've heard that it skips generations, but so far none of her 7 great-great-grandchildren (my children's generation) who are of the appropriate age have it. So, that's what? 1 out of 30 possibilities in 4 generations. Plus nearly all of the kids were/are male (higher risk).

I also have a good friend married for 15+ years to a diagnosed schizophrenic - he has great support from his family, stays on his meds, is a wonderful father to her son, is employed, and they have a good life together.
posted by LadyBonita at 8:21 AM on January 8, 2007

Anecdotal evidence here, but my maternal grandfather was schizophrenic. I think that one of his sons was (not positive, family history is sketchy and not talked about). That's 1 of 3 sons, and 1 of 5 kids total; my mom had 4 siblings. In my generation, of 8 cousins (5 male / 3 female), one male has been diagnosed schizophrenic. And finally, of my generation's kids (and we're not finished reproducing yet) we already have 1 male with serious problems, altho I don't think it's been clinically diagnosed as schizophrenia yet; he's still too young.

To summarize - my family is pretty obvious proof that is it's either hereditary, or we're extremely unlucky with that gene. Another note - I can't confirm this, but I'm sure I've read somewhere that men are much more likely to be affected (as shown by my family as well). I know my mom had some extra tests taken when she was pregnant with my brother because of the risk, and I know I will as well when the time comes. To be honest - when I start looking at my family history - having kids scares the crap outta me.
posted by cgg at 8:44 AM on January 8, 2007

From my family experience:
My Dad is schizophrenic. His kids are not schizophrenic.

None of my Dad's sisters or brothers are schizophrenic. However, one of my cousins is schizophrenic. (One of my dad's sister's kids.)
posted by fluffy battle kitten at 8:49 AM on January 8, 2007

The 10% figure is the one I've read, as well - but check back on the stats, too, and see if that 10% is strictly genetic based. Because there is an element of trigger / environment / nurture in whether or not people will develop schizophrenia it may decrease the odds for the child if they're not raised in that environment.
posted by jacquilynne at 8:55 AM on January 8, 2007

"...Because there is an element of trigger / environment / nurture in whether or not people will develop schizophrenia it may decrease the odds for the child if they're not raised in that environment."
posted by jacquilynne at 11:55 AM EST on January 8

If you've got a credible cite that supports that theory jacquilynne, please post it, because I'm not aware of direct correlations to environment or nurture that "trigger" schizophrenia.

My brother is a schizophrenic, and from what we found out late in my mother's life, her birth mother may have been severely mentally ill, possibly with schizophrenia, too. But that fork of our family history is somewhat lost to us, in the mist of early 20th century shame about mental illness, and the conviction then, since borne out in studies, that some forms of mental illness are heritable.

A couple of things mitigate the widely bandied 10% figure. First is that schizophrenia is more a continuum of chronic dysfunction, than a specific disorder. Some people have on-going symptoms for decades, such as hearing voices, yet recieve no treatment, and somehow learn to live with the condition and function in society. Others are more severely affected, but with modern treatments, can return to work and raise families. Still others, like my brother, are effectively disabled by the disease, and many of the drug treatments for the condition, over a long term, manifest their own serious side effects. So, schizophrenia is probably, at the mild end of the spectrum, both under-reported and under-treated.

Another factor that might argue for a higher transmission rate than the 10% figure suggests is that schizophrenia is a terribly frightening condition to have for many who have it, and so the rate of suicide in schizophrenics is much higher than it is for the general population. Thus, it is thought that some people who commit suicide are undiagnosed schizophrenics, in the early stages of the disease. They die, undiagnosed, and we really don't include them in the statistics for the disease.

Still, there is no "predictive" genetic test. Unlike cystic fibrosis, you can't send off a DNA swab, and find out if a child has the disease, or will develop it in the future, and make adoption decisions on a cost benefit basis with the certianty or absence of schizophrenia figured neatly in. In that regard, schizophrenia is like thousands of other diseases which may have genetic component, as yet undiscovered sufficiently for reliable genetic testing. So, not that girl, unless your friend is prepared to do thousands of dollars of advanced genetic testing on every adoption candidate they consider, I doubt that statistics about inheritance rates of schizophrenia are going to be too relevant.

Schizophrenia is more prevalent as a disease of young men, and typically manifests itself in the late teens and early twenties. So, if your acquaintance selects for girl adoptees, they are stacking the deck against having to deal with schizophrenia, but it's no guarantee. Beyond that, I don't know how you "plan" for dealing with a disease your child might or might not develop, because there are thousands of such diseases. If you want to read about the disease in more depth, including current treatments and research, is the best place on the Web to find information and links to other resources.

So, you do what people have always done, which is to take your chances, and deal with what life hands you.
posted by paulsc at 9:46 AM on January 8, 2007 [2 favorites]

Funny, paulsc, the very link you recommend goes to a story that supports what jacquilynne wrote, it seems to me:

In a study published in 2002 it was reported that among those individuals who were considered at high-risk for schizophrenia, those with poor relationships with their parents were more likely to develop schizophrenia than those who had reported a good one. The authors of this article suggest that positive parental relations may help to protect the individual from developing schizophrenia. In this study 23% of high-risk subjects with poor relationships with both parents developed schizophrenia versus only 7% of high-risk subjects with good parental relationships.

Not that I know anything about schizophrenia, but I thought it was interesting.
posted by Listener at 10:09 AM on January 8, 2007 [1 favorite]

The National Institute for Mental Health:

Many environmental factors have been suggested as risk factors, such as exposure to viruses or malnutrition in the womb, problems during birth, and psychosocial factors, like stressful environmental conditions.

If the stress of living with someone with Schizophrenia isn't a psychosocial factor, I don't know what is. I find it exhausting just being near my uncle a couple of times a year, never mind all the time.
posted by jacquilynne at 10:14 AM on January 8, 2007

To back up jacquilynne: In the psychology class I took, we were also told 10% chance if the parent had it, and that pre-natal problems like viruses or malnutrition and post-birth stress were considered huge triggering factor. (Major stress, that is, like a chaotic family situation; not just normal everyday stress.)

Your friend can presumably control the child's environment once the kid is born; so maybe another thing to check out is the birth mother's environment now, and whether it seems likely that she'll be sick or undernourished during the pregnancy?
posted by occhiblu at 10:31 AM on January 8, 2007

is recreational drug use a trigger for predisposed individuals?
if so, then making sure the child knows as she approaches her teens that drug experimentation could have more serious consequences for her than for the average kid, might be a plan to help deal with potential environmental triggers.
posted by twistofrhyme at 10:48 AM on January 8, 2007

Listener and jacquilynne, I think the best that can be said about the environmental "causes" of schizophrenia, is that they aren't well understood. This page on lists dozens of possible "environmental contributions" but the "studies" by which such data come to be accepted are rarely the classic double-blind, controlled studies we expect in other fields of medical practice. And many of the suggested "environmental contributions" like excessive weight of the birth mother, excessive pre-natal exposure to x-ray, maternal infections, maternal flu, aspirin use during pregnancy, are things we'd recommend expectant mothers avoid on so many other grounds that to cite them as "contributing factors" to schizophrenia is borderline silly. And for what it's worth, my brother had the lifelong love and support of both his parents, who took him back into their home and sheltered him for more than 20 years after he was finally diagnosed, which would make him a shining example of the unlucky 7% cited by Listener, I guess.

If not that girl's acquaintance is looking for advice on how to avoid picking a child who will develop schizophernia later in life, I'd be hard pressed to tell her, as would my brother's psychiatrists, what causes schizophrenia in any one patient. My father, in the twenty years he and my mother cared for my brother before he begin living with me, asked more than 15 psychiatrists what caused my brother to have the condition. For decades, it was important to my father to understand the cause of my brother's problems, and in the end, no one could say.

The diffuse and involved explanations offered by various doctors of genetic predispositions and "environmental contributions" just aren't useful, yet, in predicting who will come down with schizophrenia, or how severely they'll be affected in any specific case, or how they'll respond to treatment. So, I'm loath to do more than point not that girl to some Web pages which discuss various therories of the disease, and it's treatment, and let her and her friend decide what they want to believe, for themselves. Because really, it's all still voodoo, when you come down to individual cases.

Maybe it won't be in the future. Maybe someone will soon discover why various atypical anti-psychotics that manipulate serotonin levels work so well to control symptoms for years, and sometimes suddenly stop working. Or why they work in some patients, and not at all, in others. For the present, the people who have the disease, who treat the disease, and those of us who support those affected, deal with what life has handed us.

Because, in the end, that's the best medical science can offer us. And really, in the broader context of human existence, there are so many risks to try to avoid, that in the end, you can't avoid them all. Everybody dies from something. Picking a girl to adopt would statistically lower the chance that not that girl's acquaintance would adopt a child that would develop schizophrenia, but it's no guarantee, and the reduced risk of schizophrenia would be offset by the vastly increased chance that the adopted child would develop or pass on breast cancer or ovarian cancer, neither of which is a problem in male children.
posted by paulsc at 11:04 AM on January 8, 2007

Here's a link to a handy graph and article which was helpful to me when I was freaking out about this very question (I've got a schizophrenic brother).

Heredity and the Genetics of Schizophrenia

From the article: "It is believed that schizophrenia is much like cancer, which is caused by a number of genetic and environmental factors."

Shizophrenia is tough. I was told by two different doctors that schizophrenia roughly follows a "rule of thirds":
- 1/3 of patients have only one or two episodes in their lifetime.
- 1/3 of patients have recurring episodes throughout their lifetime.
- 1/3 of patients have episodes that become worse and worse over time, eventually ending in death or institutionalization.

I don't know how scientific this "rule of thirds" is, or how much the outcome is influenced by the course of treatment. I do know, though, that it's really painful watching my brother struggle with the disease, and wondering which third he'll end up in.

It actually helps me to think of it as a chronic, life-threatening disease -- like diabetes or chronic leukemia. It could definitely kill him and it could change for the worse at any time -- but it's also quite possible that he will be able to manage the symptoms and live a good life. Right now, he's actually doing very well.

And like other chronic illnesses, environment is important. For example, if parents establish healthy eating habits for their kids, it can help delay or prevent onset of diabetes -- even if there's a family predisposition to it.

If your friend is able to provide a loving, healthy home for this child, it might make a huge difference in his/her life. It could lower the child's risk of developing schizophrenia, and improve that child's chances of a successful outcome if he/she does develop it.

Tragedy can strike anybody, at any time. If your friend has a chance to be mentally prepared, it'll be more than many of us ever get.

It's a tough decision -- I wish her luck.
posted by ourobouros at 11:27 AM on January 8, 2007

See "Schizophrenia: Medical students are taught it’s all in the genes, but are they hearing the whole story?" (Found in the Critical approaches to schizophrenia section of the Wikipedia article; see also the "References" section there.) Another answer might be a question -- "Define 'schizophrenia?'" -- as my own diagnosis has varied from "Paranoid Schizophrenia" to "Bipolar II" to "dysthymic disorder" depending on who did the diagnosing, when I was diagnosed, and whether that particular shrink knew my father was diagnosed as "schizophrenic." (They've also included "schizotypal" and "schizoaffective" in there too, and "borderline personality" kept popping up; maybe one variable is whatever grave problem Oprah's featuring that week?) Maybe they should nail down what "schizophrenia" means before they "solve" what causes it?

Another point, though I don't have time now to find relevant links, is that I recall reading somewhere that that same "symptoms" would be diagnosed as "Bipolar" in middleclass suburban whites and "Schizophrenia" in other folks (like poor urban blacks), apparently because the former is a gentler and less stigmatizing label -- and the diagnosers are likely to themselves be "nice" (nonpoor nonblack) people.

So I'd advise the questioner's acquaintance to focus on the girl and whether she seems like a good match, rather than some supposed "hereditary taint." Even if she does grow up to be a Bull Goose Looney her life will be better if she finds a good home, while a perfectly "normal" kid can turn out badly if s/he's raised by idiots.
posted by davy at 11:28 AM on January 8, 2007

I don't think they normally do double blind controlled experiments to determine the causes of diseases - that would require actually, you know, causing diseases.

My point was that there are factors beyond genetics that come into play - definitely in the onset of Schizophrenia, and probably even in the heredity rates. It's not just a genetic lottery - '1 in 10 children of schizophrenics are picked at conception to be schizophrenic and the rest are safe' doesn't seem to be how it works. Nor is it '1 in 10 children of schizophrenics are picked at conception to be schizophrenic and there's not a damned thing that can be done about it.' I know that it's also not 'As long as you keep the child in a low stress environment, they'll never be schizophrenic.' I just don't think a simple number like '10%' tells all that much of the story.
posted by jacquilynne at 11:35 AM on January 8, 2007

OMIM is the online database of heritable diseases in humans used by geneticists. Here is their take on schizophrenia inheritance, it is a bit technical but you should be able to figure it out.
posted by scodger at 12:38 PM on January 8, 2007

Among people who study this question professionally, there is a vigorous and active debate about not only what the answer is, but also the proper way to determine it. There is also some debate about the meaning of the question.

For instance, it's long been known that the "twin concordance" of schizophrenia is about 50-60%. This number is the chance that, if identical twin A has schizophrenia, identical twin B (raised together or separately) will have it.

It's also long been accepted that, in the general population, the prevalence of schizophrenia - roughly approximating the lifetime risk of developing it is about 1%. (Schizophrenia can remit, but let's pass over that for the moment.)

So already we have very interesting information. We know that sharing the exact same DNA as someone who has schizophrenia raises the risk of developing that disorder 50-fold. That suggests that the DNA is probably powerfully involved in determining who's going to get schizophrenia.

However, if DNA fully determined it, thet number would be 100%, not 50-60%.

Further complicating the issue: most identical twins share a placenta. In those who do not (dichorionic monozygotic twins), the concordance drops to about 11%, similar to that experienced by siblings and fraternal twins. This suggests that there are placental or intrauterine factors involved in the genesis of the illness.

Work by Ezra Susser at Columbia, studying the Dutch Famine Winter, found that children whose intrauterine life had included Mom being exposed to a severe famine had a 4-fold greater risk of developing schizophrenia. Is this because of nutritive deficits? Is it because you'd have to be crazy to conceive during a famine? Hard questions.

As jacquilynne says, "10%" doesn't tell much of the story. If you have a kid, you have to be prepared for the idea that bad things could happen. The kid could develop schizophrenia, or epilepsy or cancer or Down syndrome. The kid could get hit by a bus. You don't give birth to a kid who is 10% schizophrenic; you give birth to a whole person who has life experiences, and right now we don't have a crystal ball to determine what those are going to be.

The parents I've met pretty universally suggest that having a kid means uncertainty about the future. Dealing with this is important, but I'd suggest that tacking a number onto it isn't the right way.
posted by ikkyu2 at 1:02 PM on January 8, 2007 [2 favorites]

It is believed that schizophrenia is much like cancer, which is caused by a number of genetic and environmental factors.

This is my understanding of the disease also. You need to realise that you don't inherit schizophrenia, you inherit genetic suscepitibility factors which add up to give you a greater or lesser risk of ending up with the disease (I'm pretty sure it's multifactorial (many genes) although I may be wrong about that part). How those factors translate into phenotype is varied and strongly affected by envrionment (there is lots of evidence that interuterine environment is very important here, even the time of year the person is born can be correlated to disease incidence). Also how they are inherited across generations is complex, it doesn't just skip generations or be passed on to a certain number of children or whatever, it's more subtle than that. It also almost certainly has incomplete penetrance, i.e. the 'disease' genes do not always lead the disease phenotype, and the severity of the resulting disease can vary even two people with the same set of genes.

ikkyu2 and jacquilynne both make very good points about what this all means.

In my experience of a family with a schizophrenic family member no one else has it, either in that generation or the ones before or after. That person did have problems in their upbringing that could have brought out the disease and as an older adult they are now disease free. Their children most definitely do not have the disease. So it's totally possible for this scenario to exist. Just as a counterbalance for all the posters above with wider familial incidence.
posted by shelleycat at 1:33 PM on January 8, 2007

Genetics no doubt is at the root; but cannabis use, especially from an early age, is widely implicated in the appearance of schizophrenia; if you are in a family w the schizophrenia gene, let's say, you shouldn't touch it (for clarity, i'm not suggesting you should touch it otherwise).
posted by londongeezer at 1:40 PM on January 8, 2007

Oh, also when you have a genetic disease and are considering children, you will often have access to a genetic counselor to advise you of the risks and ethics involved.
Maybe you could ask the adoption agency to refer you to one.
posted by scodger at 2:11 PM on January 8, 2007

"I recall reading somewhere that that same "symptoms" would be diagnosed as "Bipolar" in middleclass suburban whites and "Schizophrenia" in other folks (like poor urban blacks)"

While that's interesting, any person living in a gray area between schizophrenia and biopolar disorder is in for a very tough ride, no matter what you label it.
posted by the jam at 4:26 PM on January 8, 2007

It's worth pointing out that there is a small but vocal minority of people who insist that schizophrenia is not truly an illness, but rather a definition of behavior outside of accepted norms. Some of these folks go so far as to say that the pathology is in the accepted norms, not the person with schizophrenia, and that the existence of schizophrenia being defined as a disease reflects not on the patients in question, but rather on the sickness of our society and culture. The folks who promote this viewpoint generally come under the catch-all term "anti-psychiatry" - some of them are actually trained, licensed psychiatrists, so it's a bit of a misnomer - and Davy has linked to such an essay above.

My comments, and most of the others in this thread, obviously don't speak to this kind of formulation. Genetic tests, twin studies, and epidemiologic studies presuppose a certain model of disease that is either validated or invalidated by the study. They do not and cannot validate or invalidate the "anti-psychiatry" point of view, since they are founded on implied assumptions (e.g., "there is such an illness as schizophrenia, and individuals can suffer from that illness") that the anti-psychiatrists dispute.
posted by ikkyu2 at 4:28 PM on January 8, 2007

The 10% stat concurs with my research on this. My mom has delusional schizophrenia. She was diagnosed with severe post-partum depression shortly after my youngest brother was born, 15 years ago. She went off her meds about 5 years after that, against doctors' orders, and stayed off of them until last year, when she was forced back onto them. Her doctor and psychiatrists diagnosed her with schizophrenia at the same time. This news didn't surprise me at all, as I lived with her for most of those years and I had suspected as much. Originally she took first-generation, typical antipsychotics for her depression. Now she takes second-generation, atypical antipsychotics for her schizophrenia (i.e. Risperidone).

Importantly, though, the medication didn't change because the diagnosis changed; rather it changed because atypical antipsychotics are newer and they have fewer side effects, and thus patients are more likely to stay on them. Many of these drugs are used to treat multiple illnesses, including bipolar disorder, schizophrenia, and psychotic depression. This is one reason a schizophrenic can be diagnosed as bipolar, and vice versa: the treatment can work, despite an "incorrect" diagnosis. The anti-psychiatry crowd uses these cases as evidence against the existence of schizophrenia, bipolar disorder, etc. They use them as evidence that there's nothing wrong. The more natural conclusion, it seems to me, is that there's something wrong -- assuming "wrong" can be unpacked coherently -- even if we don't have a good grasp of what it is, why treatment works the way it does, etc.
posted by smorange at 5:37 PM on January 8, 2007

To clarify, I'm not saying that "there's no such thing as 'schizophrenia'", only that I'm not sufficiently persuaded that the "Uber-Diagnosers" know what they're talking about. I gladly concede that things like hallucinations and false beliefs exist, but I see these as "stuffy nose" kinds of things that don't necessarily always add up to "bird flu." So painting me as an "anti-psychiatry luddite" is a bit off. (And I freely admit that my brain doesn't seem to work the way "normal" brains are supposed to, and that I'm often unhappy with how my brain works regardless of whether it's "normal" or not.)

And the stuff about "atypical antipsychotics" having fewer side-effects is a marketing gimmick not an established fact. (Heroin was supposed to be a cure for morphine addiction in 1898.) It's too late now for me to go into it, but if nobody else has when I'm back here again I'll point to some documentation.
posted by davy at 12:52 AM on January 9, 2007

"...Importantly, though, the medication didn't change because the diagnosis changed; rather it changed because atypical antipsychotics are newer and they have fewer side effects, and thus patients are more likely to stay on them. ..."
posted by smorange at 8:37 PM EST on January 8

"... And the stuff about "atypical antipsychotics" having fewer side-effects is a marketing gimmick not an established fact. ..."
posted by davy at 3:52 AM EST on January 9

I'm gonna disagree with smorange, and agree, slightly, with davy on this, based on my brother's experience. In my brother's case, his condition (most often diagnosed as paranoid schizophrenia, with some religious fixations) first evidenced itself before the development of most of the current generation of atypical anti-psychotic medications. Accordingly, he was hospitalized a couple of times, and "treated' with some fairly intense traditional anti-psychotics, such as haloperidol and chlorpromazine (Thorazine). These are powerful medications, which can control the external manifestations of psychosis, at the cost, sometimes, of obvious side effects, such as tardive dyskinesia and akathisia. My brother has some fine motor control issues, that are probably permanent disabilities, which may have resulted from his days on chlopromazine treatment. Not to mention some issues with susceptibility to recurring kidney problems, and perhaps, some issues with liver function.

But there was no choice, at the time. He was busting out 4 foot plate glass windows in a religious bookstore when he was arrested and hospitalized involuntarily in the late '70s, when those were the only drugs available.

He went on and off various medications in the next 10 years, as he tried to live his life. Unmedicated, his visions are indescribably awful, and apocalyptic. Medicated, in those days, it seemed to me that he'd traded the terror of his voices and visions for 50 extra pounds, a thousand yard stare, and a lonely state of being nearly incommunicado that was heartbreaking. He worked, when he could, frying chicken, counting warehouses of widgets, sweeping floors, and doing a lot of other things where not showing up one day is the normative means of resigning. He never "made it" in the world, meaning he never found an economic niche that let him survive with real choices, and he never found anyone to love, or to love him. Eventually, he broke a big plate glass window, trying to get Jesus off a cross in a religious bookstore window, and he was arrested, and involuntarily committed, but it wasn't like we, his family, and the U.S. Army, didn't know something was wrong with him, for several years beforehand.

In a Kansas state mental hospital, he got the standard treatments of the late 1970's, and the effect on him was profound, and heartbreaking, but he was profoundly disturbed. When released after 6 months, he went "home" to live in the basement of our parents house, with a strict regimen of pills and follow up treatment that lasted all of 3 months. He didn't like the way the meds made him feel, but he took them. He really tried, and he even went looking for more jobs, with his thousand yard stare, and his memory issues, and his glasine countenance. But he got a case of stomach cramps one Friday evening, maybe as a result of something he ate, complicated by the depression of his immune system that the anti-psychotic medications induced, and by Monday, he was, figuratively, back in hell, and wrestling my father to the ground, to "save" him.

We learned then, as a family, that a simple case of diarrhea is enough to screw up an oral medication schedule, simply because the Hershey squirts don't let the meds stay in the patient's gut long enough to be absorbed. But, hey, who knew? And that landed my brother back in the mental hospital for several weeks.

That's kind of his story, through the '80s and early 90's. He "tried," hard. My parents tried, too. They sheltered him, tried to get Veterans Administration benefits, got him signed up for SSI, and Medicaid, took him to his doctor's appointments, called him to dinner, helped him find various jobs, and carried him financially when he couldn't work. They came to see his disease as their responsibility, and partially a product of the genetic heritage they'd passed to him, maybe. And, compared to many with his degree of disturbance, he was doing "well" in their care. He was, after all, not homeless, and he worked intermittently, and he stayed on his meds, more or less, hard as that was sometimes, for more than 14 years. Over time, his weight ballooned to nearly 300 pounds, and he slept 12 to 14 hours a day, but he still got up at 3:00 p.m. 5 days a week, and went to work on the night stocking crew at a local grocery store, and did his job until 11:00 p.m., when he'd be picked up by my father, and go home.

Then, one night, the grocery store was robbed at gunpoint, and a clerk was shot, and my brother and 4 other people were taken in a restroom by 2 of the 4 robbers, and all of them were threatened with being shot, and all of them were pistol whipped as the robbers tried to get the combination of the store safe from people that didn't ever have it. The robbers finally shot the manager of the store, in that restroom, in front of my brother, and the other 4 employees. And then, they left, and went on to rob 2 other stores down route A1A that night.

And that landed my brother in another state hospital in Florida, for 7 months.

We thought it might be permanent.

But he finally got referred to a psychiatrist, who is also a lawyer, who specializes in helping mentally ill people who have run-ins with the law. He heard about my brother's case and wanted to help. So he found my brother on the locked ward, and he brought with him, in 1994, a drug called clozapine.

You might say clozapine, and this good doctor/lawyer saved my brother's life. Because after the robbery, haloperidol and chlorpromazine weren't enough to counter the impression of hell my brother formed. And frankly, I understood his world view, and while it wasn't sane, it had a base in reality. People really had shown up from no where, and tried to kill him, despite his best efforts to "be good."

The good news is that clozapine has worked for my brother, mostly, although there have some problems from time to time. On several occasions in the last 13 years, he's gotten physically sick, for things as simple as diareahea, and gone off his meds. My brother, off his meds, is a strong, 6' 2" 260 pound guy, who you don't want to irritate, or frighten, and a few times, my father or I have had to chase him down a street, or wrestle him, to get him back on his meds, but that's kept him out of hospitals.

And yet, clozapine depresses his immune system tremendously. Monthly, he must have bloodwork, including a CBC white cell count in the normal range, to get his next 28 day supply of pills, and we are locked in this dispensing protocol, with his very sanity and life at stake. Last October, his compromised immune system couldn't handle another of his common urinary tract infections, and he developed sepsis, in a matter of 48 hours or so. So, he went off his meds again, and into a hospital, and for 3 days was getting vancomycin IV's, and fighting his demons. And then, when the vancomycin didn't quite cut his infections, he had a couple of days on Zyvox.

You don't ever want to be sick enough that the treatment of choice for what you've got is vancomycin by IV, much less have your doctors decide to switch you to linezolid.

Our experience is that virtually all of the traditional and atypical anti-psychotics come with the kinds of side effects that mean that schizophrenia is a long way from being a disease you handle with some pills. Even patients with good motivation and family support systems go "off" their medications for trivial reasons, not to mention the kinds of big bumps life sometimes brings on its own terms. And the complications that any of these drugs carries is enormously significant, given the length of time a person is likely to be on them.

My brother walks differently because of the medications that help him live with this disease. He's at major risk of infection, always, and the slightest respiratory or urinary infection can land him in a hospital in hours, again as a side effect of the drug that best treats his mental disorder. But he, and I, don't have a choice.

So, I count his pills, and put them in his trays for each week, and he takes them, and we get his monthly blood work, and see his good psychiatrist regularly. And most days, we make some dinner, and play with my dog, and some days, we go to the beach, and count ourselves lucky, to be alive, still, and to see another sunrise.

And I come to this recitation, far into a thread where the OP was asking for advice to pass on to an acquaintance who was concerned that "that the baby [a putative adoption candidate] will turn out to be schizophrenic as well." And where the OP goes on to ask "what would you tell her about the risks? About treatment? About variations in the disease?"

I hope, then, that this recitation has been educational, as part of this thread. But beyond this personal story, I'd suggest, again, that the OP's acquaintance is barking up the wrong tree, if schizophrenia is her worst imagined fear with this child.

So much else could go wrong, beyond her control, that would be worse.

For all that this disease has cost him, what my brother says about his life, when people ask him is "Oh, I've been blessed." And he'll go on to talk about our sister, and being uncle to her kids and mine, and about our parents, and what he's seen in his travels, and the jokes he memorizes out of Reader's Digest magazine, and the stuff he sees when he walks my dog or mows the lawn.

He's a wise man, my brother. And sometimes, an inspiration.
posted by paulsc at 11:58 PM on January 9, 2007 [5 favorites]

davy: In no way did I mean to paint you as an "anti-psychiatry Luddite." I used the term anti-psychiatry because that's where to find a Wikipedia article about the topic.

The anti-psychiatry folks make a lot of good points about visualizing disease as something that happens to a community of people, not just a single patient; many of their criticisms have already become part of the mainstream of medical thinking, and my own suspicion is that many more of them will do so in the not-too-distant future.

One of my co-workers, for instance, investigates the effect of resective epilepsy surgery on social connectedness and functioning. When a neurologist is examining a patient, it is easy to say "move your eyes left," or "hold up your right hand," or "name as many animals as you can in 30 seconds."

But what about "Demonstrate your skill in forming and maintaining social relationships and accurately evaluating social cues"? You can't test that at the bedside. But isn't it something that your brain does?

My co-worker, and others, are investigating the idea that some of this "silent" cortex that's commonly removed in epilepsy operations is actually responsible for these functions, which are critical for psychiatric health. It is a reductionistic approach, to be sure, but it's better than what we have now, which in general is neglect and ignorance of the issues.
posted by ikkyu2 at 2:44 AM on January 10, 2007

And the stuff about "atypical antipsychotics" having fewer side-effects is a marketing gimmick not an established fact.

Yes, I should have qualified my claim: they have fewer side effects for some people. This is true in my mom's case. Frankly, I don't think we disagree about all that much, davy.

paulsc, a lot of the more general parts of your story match my own, and so do some of the specifics (down to, for example, the chlorpromazine). I don't know if it'll help the asker, but thanks for sharing anyway.
posted by smorange at 9:36 PM on January 10, 2007

paulsc just helped explain why I won't take those pills. But then I'm short, only 20 pounds overweight, and my bark really is worse than my bite (in real life my petite "SO" and her 12 pound mutt push me around regularly), so thankfully "they" are usually content for me to keep my head down in public and not physically hurt anybody.
posted by davy at 11:36 AM on January 15, 2007

« Older What's the best way to organize a mountain of...   |   Name this scifi with male sex slaves Newer »
This thread is closed to new comments.