How to talk so doctors will listen
Q: My 13yrold daughter is being watched for bipolar, right now she experiences hyperactivity around holidays and her birthday, she's been dx'd with separation anxiety, OCD, ODD, school phobia and generalized anxiety disorder. We are back in counseling, and we have seen a psychiatrist recently that said there hyperactive times were a mood disorder, but that since she is not acting out in school and she doesn't have the classic signs of depression (which I am not sure of what they are in children or adolescence, I do know that she was depressed about two years ago, and we sought counseling then also), they don't want to use any medication right now...we were sent back to the psychologist for help with the ODD. I feel like we are constantly putting bandaids on this - she's been in and out of therapy since shewas 6 and nothing seems to stick. She is doing poorly in school, especially around the times when she has the hyper episodes,how do I get the dr's to listen to me without sounding like a pain in the you know what? I have always been concerned about her ODD, nothing was ever done until now, when she threw an object that nearly hit her baby sister. I know that the dr's know that we are really concerned about this, but again, I feel like we're just treating a part of her illness, not all of it.I asked the psychologist if we had to wait until she was hospitalized or one of us were because of her tantrums and she said that she wouldn't let her get that bad, but I am leary since I have always said that she has had these rages since she was little, and it was never addressed. Any suggestions as to what I can say that will make them listen? Thanks.
Dear Ann --
1. Bring in references. Try www.bpkids.org for some. Their reference list has about 30 articles that speak to your daughter's condition; about 6 are online and linked. You will understand enough to see what the articles are saying, and see whether they support what you are trying to say. Copy them and bring them in. Copy the entire reference list and bring that. This is what doctors (most of them) listen to.
2. If you have the means and the option exists, get a second or third opinion. (Sounds like you'd already have done that if you could).
3. In general, doctors have big egos (ah, so you'd figured that out already, had you?). So, they are more likely to listen if their ego is stroked first. "Doc', I know you're trying awfully hard to help us, and I really appreciate that. You've helped us a, b, and c" (fill in with your specific examples).
Next step: guess what's holding him/her back, and state your understanding (also with appreciation, if that isn't overdoing it by now): "I know you are trying not to have my daughter exposed to medications with unknown consequences at her age, and that any medication poses a risk for her it might not for an adult. I appreciate your trying to protect her in that way".
Now you can add the point you wanted to make all along as an alternative view, not as an opposing view. What's the difference? it's all in the word you use to connect the two ideas: where you would say "but" -- which most listeners can hear coming a mile away -- you say "and". For example, "Ann, I know you're trying to help your daughter get better, but you need to understand the risks we would be taking here". See what that does? "I didn't really mean what I just said; I really mean what I'm about to say!" Compare this: "Ann, I know you're trying to help your daughter get better; and, at the same time, we need to understand the risk we would be taking here". You get the point. You probably already know how to tiptoe; and, at the same time, doctors require more tiptoe-ing than most. This is a handy skill to practice, for lots of situations. Begin your practice by listening for the word "but", and every time you're about to say it, try the word "and", and see what happens to you! It's really more about changing your own way of thinking about how the two ideas you are contrasting fit together: alternatives, or opposing options?
4. Finally, in this particular situation, consider changing the "target" from possible bipolar to conduct: aggression, impulsivity, ability to restrain behaviors. There is some evidence that Depakote in particular has value treating these symptoms (mind you, the Depakote manufacturer has had a role in getting these results into existence, and then getting them out to the public, so a grain of salt is in order there). Here is an example of this research:
In their own research, Steiner and colleagues sought to evaluate the effectiveness of the divalproex [Depakote] in preventing angry and aggressive outbursts and other uncontrollable emotions among 61 violent, conduct-disordered youths, aged 14 to 18.
"These are convicted, aggressive kids who have committed murder, manslaughter, etc. We had to screen about 205 [youths] to get these 61," he said. Of the 61, 58 completed the necessary outcome measures and were included in the final analyses.
The youths were randomized into two groups, one received low doses of divalproex (up to 250 mg/day in divided doses) and the other high doses (usually about 1000 mg/day in divided doses).
"It took about two weeks to get the kids into therapeutic range. They were then managed by the clinical team, and there was a research team that blindly assessed their progress and outcome," he said. "The primary recruitment target was conduct problems."
Youths with comorbid bipolar disorder or schizophrenia were excluded from the study, but "we had the usual culprits in terms of comorbidity," he said. All the youths were diagnosed with conduct disorder, but 88.5% also had comorbid substance abuse disorder; 61%, some learning disability; 54%, some affective disorder, primarily dysthymia; 51%, ADHD; and 21.3%, posttraumatic stress disorder.
At the end of the seven-week trial, those in the high-dose group had a much more positive response than those in the low-dose group (Figure 1). The overall response rate was in the low 30s, "which sort of maps onto the comorbidity with mood and affect problems," Steiner said. (As a comparison, in outpatient treatment of children and adolescents with bipolar I and II disorder, Kowatch et al.  found response rates to lithium and carbamazapine in children and adolescents to be 38% and to divalproex 53%-Ed.)
Steiner and his team also sought to determine which variables were affected by divalproex. At the end, anger and aggression as well as impulse control were blindly rated (figure 2). All were significantly different with effect sizes ranging from .74 to .91. In addition, on a weekly basis, the investigators measured restraint, the obverse of impulsivity, and distress, a proxy of negative affect. Both conditions improved.
"The differential effect came in the restraint factor. The effect size was fairly good; it was 0.45, which is respectable. The group that was in high-dose condition…essentially showed an increase of impulse control as the kids got treated," he said. "Parenthetically, I can tell you that a lot of the kids had a lot of trouble after they stopped being on the medicine."
Here's the article (online version) that this came from; much of it is more technical and more directed towards issues of violent behavior, not "bipolar" stuff.
One of the reasons the doctors hold back is that there is very little research on how these medications affect kids, e.g. down the road a few years, or how it affects development of the brain. There is a significant concern about Depakote causing "polycystic ovarian syndrome" in adolescent girls (or any cycling woman), and I'd take that concern very seriously, including considering alternatives like Trileptal (for which there is even less research, basically none; but it is in the same class of medications and may have a much better risk picture -- "may", because we really don't have the data to say). Read my site on Trileptal for more info there.
Hope that helps. Questions like yours help me stay current, do a little homework, and a little thinking. I've taken the liberty of using your question as an example on my website. Let me know if that's not okay with you.