So again I have found myself scouring the internet. And I will use the library as well.
This time I am looking for books, articles, general articles, medical journal articles, science journal articles, abstracts, thesis papers, any kind of publication explaining the science of hormones, the science of the brain, and the science of the drugs used on our children.
What causes mania? What causes psychosis? What is the role of hormones and how do they work? Why do the medicines work or not work? Why do they have side effects? Why do people experience withdrawal symptoms when they discontinue the medicines? What do the medicines do to the brain?
I want to know.
And so far I have found a lot.
But let me tell you, these publications are not easy to understand. I mean, I took 4 full years of science classes in college but I didn’t exactly kill it in General Chemistry and Organic Chemistry, if you know what I mean, and I never did take Biochemistry so I am a real layman when reading this information.
But I muddle through the best that I can to understand what I am reading.
And I read and I search and I wonder…
Why doesn’t anyone “dumb down” this information for the general population of parents who are trying to help their kids so we can better understand this predicament and make better decisions?
Why doesn’t anyone ever say to me something like, “Well, Ms. Parent of a Bipolar Child, from what you tell me (and this is another key element I will go into at a later point in time) your child exhibits mania and psychosis and we know this to be caused at least in part by an excess of Dopamine in the brain. So, I am going to prescribe a partial Dopamine blocker which should alleviate some of your child’s symptoms by suppressing some of that excess Dopamine. How does that sound? Oh, and also if you are curious as to what this psychotropic drug is going to do to your child, here are some unbiased information resources that you can read so you can make a better informed decision.”‘
This doesn’t happen.
Not in my world anyway.
In the book “The Bipolar Child” by Demetri Papolos and Janice Papolos, they devote a chapter called “What Causes This Condition” to explaining the neuroscience of bipolar disorder. But, you know what? I read that chapter and think…What the ___???? I have no clue what you are talking about. Just so you know, I did read the whole chapter but on a normal day I’d think…I’m one page in and I’m already spaced out and thinking about other things because you’ve lost me. And I’m sure others have felt the same way.
So it seems that this is the point when parents throw their hands in the air and just say, “I have no idea, let’s just try the drugs and see what happens. You’re the doctor.”
I know I did.
And this is where the cycle of over medicating our children begins.
So, I’ve now decided I want to know.
I want to know the science of what is going on with my child and why these drugs work or don’t work etc., etc.
And I will try and share that information with you. In a basic manner, that I can understand and you can understand. And yes, it will be oversimplified. But quite frankly, that’s what I need. I need it to be oversimplified so I can at least, in part, understand.
And if I get something wrong, please let me know. I am not an expert. I don’t even come close to being an expert. But I am a parent that wants to understand. And I want to learn.
And I want some answers.
4 Comments
Great questions! I teach about this stuff to my grad students and present about it with my daughter. Check the resources on our website and if you have any good thoughts let us know (www.lineacinda.com). The diagnosis and treatment of BP, particularly early onset, is so damn tricky. Such a “wait and see” or “wait and freak out” as I call it phenomenon. My daughter does not want to be on meds but when finally on the correct dosage and Rx she became stable enough to start working on her “skills” with the goal of eventually going off the drugs. But when the drugs don’t work or worse yet cause really really bad side effects it is horrific. Self-medicating is where my 19 year old daughter went with that issue. She told me that if the meds the doc was giving her almost killed her (twice) why not self-medicate? One more thought. Have you read any of Kay Redfield Jamison’s books? She is a leading researcher in the field and has written scholarly texts and personal books including Touched by Fire. I know this doesn’t particularly address early onset but she is an amazing person and I really trust her work. She directs the mood disorder clinic at Johns Hopkins. She does believe in meds of course but more so a solid diagnosis that warrants the right meds if and when necessary. Also, have you read Mind Race? Thanks for your good thoughts. Sorry this is so long! I am in the midst of all of this in my professional and personal life so it was great to find your blog. I try to write about something else once in awhile on my blog but have a difficult time it is all so overwhelming! Take care!
I have had discussions with dozens of doctors and many times stump them with the brain talk. One psych admitting, he didn’t know how the brain worked, or how the drugs work on the brain.
That is after a decade and a dozen or more often times unwanted an assigned doctors in hospitals.
I have years of abstract reading under my belt and the best summation of what I can pass on, is that they do not know what psychosis is, how it happens, and the drugs are hit and miss in efficacy, because often it’s the person themself who had an awakening from an event and came “back”.
Inside locked down psych wards the last concentrated 4 years I have seen hundreds of patients, all in drugged stupors, all lost in their eyes, some locked away for 6 months or longer.
My daughter was ran through all the genetic testing where syndromes had psychosis in the picture, all negative outcome.
I have seen her the most psychotic on the highest doses of atypical antipsychotics.
I have seen her stop talking for 2 years on heavy doses of the deadliest one–Clozaril–and when she stopped the drug she talked and sang.
Now they have her back on it and she is going to scattered psychotic statements with some words I recognize in there few and far between.
The clinics that host the most prominent doctors also host some of the most conflicted and some are being investigated–for breaking protocol on drug testing in kids, lots of information there to cause an eye brow to be raised.
The drugs are pushed through the FDA without testing in kids and used off-label in children and teens, only recently are Abilify and Risperdal FDA approved, and those drugs are dangerous chemicals without studies in long term use in growing brains.
Robert Whitaker, author of Mad In America lays out the information pretty well, and has written about patients with increased lifespans off the drugs.That book is worth reading, and will take you higher in thought that the Bpkid book, which I had also worn out a decade ago searching for answers.
I never trusted the doctors, questioned them constantly, and was often told “Im the doctor”.
A decade later, those doctors have the same answers, NONE.
I would limit your time researching so you don’t get burned out, as in hours per day. This coming from a research junkie.
This old post of mine has links of some research posts I wrote:
http://bipolarsoupkitchen-stephany.blogspot.com/2009/01/reflections-2008-articles-soulful.html
Here’s another blog that could be helpful
http://bipolarwellness.blogspot.com/