Tuesday, May 6, 2014

Bipolar Every Day

There is never a day where we can predict, upon waking, what mood will strike. It could be fun and silly, or wails and shrieking. The only way to find out is to get up.

It would be great if Genea could submit a scaled number prior to going to bed. (1) being awesome and (10) being the hardest, she could give us a slip of paper saying tomorrow will be an (8).  Surely someone could invent an app for that. Along with the alarm in the morning, a number would flash on the screen. Grit your teeth, today is going to suck! Or, get your giggles ready, tomorrow is scheduled to be a (3)!

Bipolar Disorder is never something we can forget about. No relaxing with a day off. Even when Genea seems stable we have to watch, try to anticipate, and wrap our daily choices around predictable triggers.

She's had a rough few months and I'm struggling with what to do. She takes a medication that she started about 2 years ago. This one medication has made an immense difference. While other meds have helped, they typically fade after about 3 months and lose all "power" after about six. This has been the  one that has helped and kept going.

The recommended top dose is 6 milligrams and she is currently on 2 mg.  If I call her psychiatrist and ask for  an increase in dosage, he'll probably go to 2.5. Being as this is the one and only thing that has worked long term I feel like I should be hoarding the increases. 7 more years until she turns 18 and can legally make these decisions for herself, for whatever that's worth. If I'm crawling across the desert with one big sip of water left, should I wait until I am almost dead to drink it? Or should I use the last of it to push me on a little further than I could have gone otherwise, even if that means I might run out too soon?

Of course a medication increase is not up to me. However when I describe recent changes, that is most likely what her psychiatrist will do. I'm not interested in, god forbid, adding another medication. It's a tremendous gift that Genea's psychiatric team considers me a deciding part of the package. I read so often about parents who are rigidly told, instead of consulted.

The nature of Bipolar Disorder is how it cycles. The current low that we're in has been going a little over four  months- and 3 months is typical for her.  She should have pulled out of it by now. I thought she was on the upturn for a week or so until the violence returned just recently. But sometimes the lows ebb away on their own. Well, not often. Ok, maybe once. And it's possible I miscounted. Somehow though, despite 7 years of this, I hold on to hoping. Probably stupid.

Am I letting her brain damage itself? Marinating in neurological chemicals equivalent to pouring gasoline on a burning building? Is it better to increase an outside chemical with potential side effects that may or may not have long term effects?

I find myself glad I stalled signing her up for extra performance lessons in May. When her control cannot be relied on inside the house, I do not let her participate in extra things outside the house. That's always been my criteria anyway. We might do short term, inexpensive activities where if she has to miss or if she blares symptoms over a metaphorical loudspeaker, we can back out, social damage minimized.

Between the ups and downs are periods of reasonably expressed emotion. Its hard, almost as hard as the severe parts, to see balance. Because if it's in there, where does it go? Where the fuck does it go?

Then of course there is "the line" conversation I have with myself constantly. What line is this crossing? Is this a RAD thing? A  puberty thing? Is is Bipolar or that she's 11 or that she's sick or tired or what?

And the other line of my own making. Who am I to sit here with the luxury of my (presumably) logical brain thinking up all this shit to worry about? The child needs help. Get her the goddam help.


  1. Speaking from personal experience, I’d suggest you increase the meds – mental illnesses aren’t static, they’re progressive. The longer a person goes without the right treatment, the sicker they get and the harder it is to get them back to “stability”. The reverse is also true, the longer they’re “stable” on the right treatment, the greater the likelihood the individual gets “accustomed” to feeling capable, succeeding at school, having/keeping friends, and all the other stuff that will up the odds of her being a productive citizen when Genea grows up.
    My baby sister and I come from a family with a long history of mental illness severe enough to warrant meds and the odd in-patient stay starting in elementary school – her, unfortunately, way more often than me. Through trial and error, it basically turned out to be MUCH better for everybody (particular K) to take action when we sensed she was *starting* to fall apart. Catching it early (addressable 98% of the time with a medication adjustment), kept her on an even keel and at home. Letting it go, even just little when nobody was quite sure if she was unbalanced or just cranky, more often than not landed her back on the pediatric psych ward for a week or two. Don’t worry that you’re “bothering” the doctor, that you need to “guard” the meds so they work longer, do whatever you can to keep Genea as functional as humanly possible.
    The happy ending to this obscenely long blog post is that both K and I turned out just fine – I haven’t been hospitalized since college (I’m nearly 40) and K hasn’t been for going on five years. We’re both college grads and more of less productive members of society… in large part due to timely, appropriate mental health interventions.
    (One of the things I do wonder about is the scientific research on early-onset bipolar… the earlier the illness hits, the more severe it typically is, but there’s been some compelling research indicating that some who were diagnosed as very severe as children are not-so-severe or not-at-all by the time they’re older. The researchers argument is that the severe kids were probably misdiagnosed… but any kid who got into the study was diagnosed early and got pretty much every intervention on the planet, at a premier research hospital. But maybe they got better. Or a little bit better. Maybe diagnosing/treating mental illness early actually *helps*).

    1. Oh, and one more thing -- if your daughter grew (got bigger), there's a semi-decent chance she may need her meds increased a tiny bit.

      And a second thing -- certain meds that are commonly prescribed for kids with mood disorders are "sweated out". If Genea goes to a school that doesn't have air-conditioning, runs around outside when it's really hot out, has sensory issues that drive her to wear wooly sweaters during heat waves, etc. you will want to discuss this with her psychiatrist. Proactively, ever so slightly increasing that sort of med in the spring can often head off the spring crash that is fairly common in kids with mood disorders.

    2. THis is sooooo helpful! thank you for sharing so much valuable personal information, it helps a TON! I hope the research you read is correct- I really anticipated this the rest of her life. But if we can help her long term by treating early, gosh that would give her such a 'leg up' ! I'd never heard of the sweating thing- totally makes sense. She does overheat quickly too. She hasn't had a growth spurt recently but now that I think back she had a big one right after Christmas.
      THANK YOU!

    3. Neither K nor I are "cured".... I hope I didn't inadvertently imply that! The MIs are still MIs -- however, for both of us, the symptoms are well-controlled with medication.

    4. ah, this is why I should lock down my keyboard after 10pm, I don't make sense lol. I was referring to what you said at the end about recent research. With neuroplasticity it makes sense that catching an MI earlier would increase chances for long term improvement with lessening symptoms. Let's hope!

  2. What she said.

    Actually, are you lucky enough to have someone - anyone out there in "official helpland" who would read this? Or a simplified version (they'd miss out on the humor then, sadly). Your questions and observations all seem valuable. I realize I am fortunate enough to have a psychiatrist and two therapists who would all read it. (They'd probably shake their heads afterwards and say "I don't know" but - at least we'd all be in the same place.)

    1. Yup, the observations have been shared. Anecdotally, many of the doctors on the pediatric psych unit have seen the same thing... but it's tough to substantiate anecdotal observations as:

      1) unless there's a well-established family history of severe mental illness, proximity to a truly excellent pediatric psych hospital and pushy parents, it is exceedingly difficult to get an "official" diagnosis of a mood disorder in an elementary school age kid.

      2) a family willing to have their little kid "officially" diagnosed in grade school is probably a lot more receptive to psychiatric interventions than the "average" family.

      (Unless you've seen, up close and personal, what happens when you don't aggressively treat a severe mental illness in a small child, I'm guessing you are much less likely to give your 6 year old meds with potentially awful side effects).

      3) without a formal diagnosis, you cannot get access to a pediatric psych unit, let alone a good one.

      4) a kid who receives treatment gets treatment from a truly excellent specialist unit will probably do better than one who gets haphazard or average care.

      (Having the same doctors from early childhood, many of whom also treated my mom as girl, I think, makes a huge difference. This *relationship* is what results in good care. An appointment with a psychiatrist two in two weeks or two months later isn't helpful; a doctor who doesn't know you and your child *very* well simply will not phone in a script for mood stabilizer at 3:00 AM, sight unseen).

      4) proper controlled studies cannot be done, since it's totally unethical to withhold treatment from a sick kid.

    2. I just got the reminder call today that we have an appointment with her psychologist Thurs. We call her The Talkie Doctor, lol. I will run this past her and see what she thinks too. Genea has had some stressors lately, but then her whole life is a stressor so.... I mean, stuff changes every day that throws her off.

  3. I have no mental health experience to relate but Genea is very lucky to have you as her parent. It's not easy to advocate for others and I think you articulate the challenge of that very well. That's a really great post.

  4. Am I letting her brain damage itself? Marinating in neurological chemicals equivalent to pouring gasoline on a burning building?

    This hit home. And, I'm so grateful for the information in the comments!


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