Diagnose This, *sshole.

Posted by fxckfeelings on March 1, 2010

A lot has been made recently about how it seems like every child is being diagnosed with autism; celebrities like Jenny McCarthy, whose son is autistic, have led the charge to blame and outlaw vaccines in order to protect kids. In reality, as science progresses and our understanding of the autism spectrum deepens, the disease hasn’t expanded, just the diagnosis, i.e., there aren’t more autistic kids, just more kids being called autistic. While today’s cases aren’t autism-related, they both illustrate the myth of the power of diagnosis. Focusing too much on what your disease is does nothing to improve your health. Incidentally, Jenny McCarthy has revisited her take on vaccines—it turns out her son’s diagnosis was wrong.
–Dr. Lastname

In the last ten years, I’ve heard voices in my head and most doctors describe my symptoms as psychosis, but nobody can tell me exactly what’s wrong, or find a medication that makes them go away, or really do anything but listen to me give them my laundry list of “how I’m crazy” and try to take the problem apart. In the meantime, I’m struggling to hold onto my job, my wife is struggling to put up with me, and my kids (now grown) just worry and get more distant. My disease stays the same, my life gets worse, my diagnosis goes nowhere. My goal is to figure out what is causing the symptoms, get a real diagnosis, and make real progress.

I wish the word diagnosis meant “we know what’s wrong and what to do,” but it often doesn’t, except in certain special cases. (Like, right now I feel safe diagnosing your reaction as disappointment.)

Very often, all a diagnosis means is that we recognize a group of symptoms that often travel together in the same social circle, and often get a little bit better when they’re treated with a particular group of medications. Tada.

That’s almost always true when the doctor making the diagnosis is a psychiatrist, because we know less about mental illnesses than almost every other kind of illness (and less about the brain then we do about any other part of the body).

We really should use some other word than “diagnosis,” but we don’t, because we love to think we know more than we do, which goes to prove that doctors are just as vulnerable to idiot false hopes as everyone else.

Some people put a premium on hope of any kind, but false hope is dangerous, because we pay for it with unrealistic expectations that lead to feelings of failure. You expect that, once you get the right diagnosis, you’ll get the right treatment, but I diagnose that assumption as bullshit.

In the psych business, if a treatment turns out to work, then you’ve got a sort-of diagnosis about what’s wrong. That’s as good as it gets.

The bad news is that the experts have much less to offer than you (or they) would wish, but the good news is that you can help yourself by doing a regular risk-benefit analysis of your symptoms and the various treatments, regardless of whether or not your symptoms fall under a neat umbrella or not.

Ask yourself how desperate you are to improve your symptoms, not just because you feel bad or want to be normal, but because they get in the way of what matters in your life, like work and relationships. Your treatment choices include some high risk options, so you need to decide, right from the beginning, whether getting rid of them is worth exposing yourself to the equivalent of cancer chemotherapy, or just Advil.

From what you say, it isn’t clear whether your symptoms are causing you nearly as much trouble as your shame of having them. If you can ignore them, get your work done, and have a decent conversation with your wife, then maybe they aren’t worth pursuing unless the treatment is fairly safe. On the other hand, if they’re driving you and everyone else crazy (them figuratively, you literally), then go for the big guns (“big” as in “risk of nasty side effects”).

Use what you know about treatments to classify them into low, medium, and high risk. Then review the treatments you’ve tried in the past to see whether there’s anything left, in any category, that is still worth trying.

If you’re really desperate for a diagnosis, here’s your second opinion from a real MD—you’re nuts. I prescribe giving up on naming exactly what’s wrong with you and moving forward on figuring out what treatments are worth what risk.

STATEMENT:
Now you’re ready to make your own decisions. Keep yourself on course with a set of directions: “My job isn’t to get rid of my symptoms, it’s to manage them as effectively as possible while going on with my life. I’ll compare the risk of treatment with the risk of having the symptoms continue. Once I’ve made my decision, I’ve done a good job, regardless of what happens to my symptoms, and, if they don’t go away, my job is to ignore them and avoid doctor visits and treatments unless I think they’re absolutely necessary.”

My 10-year-old son has afternoon tantrums that are really, really hard to watch. He screams, kicks, and cries, and nothing my wife and I (or anyone else) do can stop him or calm him down. We finally took him to a psychiatrist, and he told us our son’s probably bipolar, and that we should try one of those drugs you see on TV, but the side effects sound brutal. I don’t know if I want to put my son through that, but I do know things can’t continue the way they are now. Our goal is to make his tantrums better.

A lot has been made recently about the increase in cases of bipolar disorder among children. Some people are quick to point to household toxins poisoning children, while others think that drug companies are inventing problems to make a buck. The reality is probably something far less sinister—semantics.

Adults who get manic symptoms (that’s what we generally mean by the diagnosis “bipolar”, that and not much more) were holy terrors at a young age, so it’s tempting for well-meaning and helpless-feeling psychiatrists to wonder whether the adult symptoms could have been prevented with early treatment.

The trouble is, the number of kids with bad tantrums who eventually develop manic “bipolar” symptoms is probably pretty low, it’s hard to determine, and none of the experts can do more than make a rough guess.

So don’t get spooked by spooks, screaming, or diagnoses. As you learned above, the predictive power of a psych diagnosis is limited and doesn’t tell you much (we wish that weren’t true), and parents who live with a kid are usually much better able to make a risk assessment than a shrink who sees him for an hour.

For example, these tantrums seem really scary—and loud tantrums are rattling—but you’re not saying there’s a risk of serious injury to life, limb, pet, teacher, or classmates, so maybe the overall risk isn’t all that high (except in terms of eardrum damage, embarrassment, and fear). And if you’re afraid for his future, remember, there are lots of nice guys who were holy terrors at his age.

The other troublesome thing is that the medications that (sometimes) make bipolar symptoms better pose moderate risks themselves, particularly when they’re taken for longer than a few days. These risks (and don’t tune out the way you do when a cheery television voiceover recites a list of catastrophes as if they’re unlikely) include weight gain, diabetes, high cholesterol, and/or kidney or thyroid damage. That doesn’t include the long-term effects we don’t know about, since we’ve done no testing on what taking drugs like this can do to kids over time.

If, after a reasonable risk-assessment, you feel the situation is desperate, then the risk of trying these drugs despite the lack of testing might be worth it.

Review the types of treatment and their risks. There’s behavioral treatment, which is lowest risk and always worth trying, except when a kid is in too much danger and needs a locked room right now. The treatment is for the kid, of course, but you’ll be the main one doing it, so find a local kid-whisperer and get to work.

Sure, you can put “how are you feeling” talk therapy in the low risk treatment group, and sometimes it helps, but don’t keep doing it if it doesn’t, no matter how much you (and the therapist) wish it would help eventually.

There’s a group of low risk medications that might help (or hurt). What makes them low risk is that, if they hurt, it’s easy to stop the medication, and, from what we’ve seen so far, there’s rarely any permanent harm done.

Naturally, you’d love keep your kid healthy, but you can’t. So first think hard about how much danger his health is in, and then how much health he might lose if you try to make the original illness go away. It’s tricky and unfair, but so is life, no matter what your diagnosis.

STATEMENT:
Give yourself some upper-lip-stiffening advice. “I want to stop these terrible tantrums and protect my child from future mental illness, but my control over both those wishes is limited. So I’ll learn behavior management, get earplugs, assess the risks, make the hard decisions, and hope we can turn him over to his wife as soon as possible.”