"It's intended to buffalo people like me into silence (not gonna work) or marginalize us as irresponsible wack jobs."

So have they called you a Scientologist yet?

"Our lives begin to end the day we become silent about things that matter."
Martin Luther King, Jr.

From an episode of the Simpsons, quoting President Lincoln,

It is better to remain silent and be thought a fool than to open one's mouth and remove all doubt.

I'd like to prvide you with a 'real-life' anecdote
of appropriate psychiatric care for possible childhood bipolar disorder.

First, careful evaluation: After 6 months of intensive therapy (twice a week)combined with at-home interventions failed to make significant inroads on my 6 yr-old's crippling anxiety, rigidity and explosive rages (always followed by tearful, heartfelt remorse,) our therapist recommended a psychiatric consultation.

The psychiatric evaluation was 4 sessions long, and involved a careful family history, multiple sessions of direct observation and interaction with our child, and consultation with the thrapist. Even then, a 'firm' diagnosis was not made--we were told that our child "appeared to meet the criteria for early-onset bipolar disorder," but that this was a controversial dx and that the prognostic implications were unclear.

When medication was started, our child saw the psychiatrist bi-weekly, and then monthly, and continues to be seen every other month. The psychiatrist stays in regular contact with the therapist. At psychiatrist visits, we are always asked about sedation (there is none) and weight gain. My child's blood sugars are monitored at regular intervals, and cardiac screening was performed at the psychiatrist's insistence.

In other words, my child's physical health is paramount, from everyone's point of view.

We have found that a miniscule twice daily dose of Risperdal allows my child to function as a participant in the world.

This was a child who could not attend friends' birthday parties or family outings without major meltdowns of an intensity far beyond that of a 'temper tantrum.'

My child couldn't go to the store, or have playdates. My child's older sibling had to have a lock on the door for her protection, and I ws regularly covered with bruises and bite-marks. I lived in fear of the time when I wouldn't be able to physically restrain my child, because when enraged my child was a danger to self as well as others (for example, trying to run into traffic.)

Does medication eliminate all of my child's symptoms? Oh, heck no. But we're after the lowest possible dose that lets my child be in the world without daily life being a constant misery. Now my child can play, and go to school, and have friends, and my child's sister isn't afraid.

My child continues in therapy. The ultimate goal, of course, is that my child develops coping skills and self-management with maturation, and that medication be discontinued when possible.

So, does my child really 'have' bipolar disorder? I don't know. It's not GAD, it's not OCD, and my child isn't on the autistic spectrum.

Ultimately, the diagnosis, such as it is, allowed my child to receive good care.

I only wish that every child with this diagnosis received such care and follow-up. I, too, have hear parents tell stories of frightening polypharmacy, of health issues gone unlistened to--long before the recent tragedy which highlights the consequences of criminally poor medical treatment.

(Please don't make my email public, but feel free to contact me if you'd like, PD.)

Silence is not golden, and truth is the brightest light on the path of knowledge.

Good post, Philip.

You say:

"But I find it a bit weird that he is willing to make so much noise on this subject on his blog and take a swing at so many people who are either thinking out loud or doing journalistic legwork, when he's been completely silent on his blog about the Zyprexa scandal, NAMI touting Risperdal and the looming Congressional investigation of Eli Lilly and AstraZeneca among other pressing issues before patients, child or adult, in the real world."

That's a little odd, I thought. It is HIS blog. He is not obligated to cover everything that's going on out there, no one person can do all that on his/her blog, it's not a newspaper.

Oh wait, the same is true for your blog. I can come here when I want to read about...I dunno, horror stories on pharmas perhaps?

Wow, I'm having an "Eureka" moment.

Except, I see one difference.

He is writing about his day - apparently an impressive one, with the Papoloses and Anne Sheffield and New York City, and the talks he is giving at various places - and a side-swipe at "misguided fear-mongers". It's hyperbole I am used to.

(See...I know the word "hyperbole", yippee me, but I don't think I could quickly conjure up something like "misguided fear-mongers". I may just say "mudslingers" and pat myself on the back for pulling out fancy lingo. I'm jealous of you journalists and authors who can use flowery language (not saying 'misguided fear-mongers' is an example). I should stick to what I know best, and make sure the number of opening and closing paranetheses are equal).

I digress. Anyway, when I followed your link to John's blog, read John's blog post, I was like, "Come on, John, take a swipe directly at Philip Dawdy, isn't that what you mean"? But then I read more of your blog, and you are linking others who are linking to John's blog, and so there are quite a few links to John's blog on this, perhaps? I don't know if John gets a tiered bonus based on the number of links into his blog.

To be honest, I don't read either of your blogs often, I wish I had the time. But this is an interesting and healthy(?) twist. Let's develop checks-and-balances on mood disorder bloggers, while we keep track of pharmas, FDA, CMHS, NAMI, DBSA, etc.

I think you and I should have sponsors also. Otherwise we'll be stuck with the opinions of those who - shall we say - have sold their souls to pharmaceutical companies?

I'll admit I haven't sold my soul to pharmas because they haven't tried to buy it. Neither has anyone else.

i understand your points sekhar, but i find it odd that someone who casts himself as an advocate for patients (and i believe that he is) has said zilch about the zyprexa scandal. not even a stray mention on his blog which is hosted on a site that takes pharma ads. i don't allege that pharma is calling the shots but i find the silence confusing.

and no michael no one has called me a scientolgist yet. they probably know better.

Money can blind people and distort their viewpoints without them even realizing it - people's sense of identity is so tied up with their income and where it comes from. Whether it be income from pushing a certain kind of treatment, or drug, or from selling a book, or anything else, I think the effect is all the same.

Since so many children are being given psych drugs today, I wonder how their counterparts in earlier generations managed to cope. Inherent predispositions probably haven't changed that much in the last 50 or 100, or even hundreds of years, so how did the same types of kids who are being given drugs nowadays manage to survive before such drugs were invented?

Lisa Simpson, you're too funny.
Anyway, this post made me think of a couple I know with a son who was being sent home from kindgergarten due to explosive rages and throwing things and temper tantrums, you know name it he did it. But, you have to consider the context. He was an only child and the king of the household. He had no structure at home. He was allowed to go to bed when he fell asleep in the floor (no set bedtime). Then, all of a sudden he's in kindergarten. His world where he was king was turned upside down. All of sudden he went from no structure to a very structured day, a set bedtime, and a new sibling thown into the mix. He didn't take to that too well and probably met the definition of mental illness during that tumultuous time. But, who wouldn't. It scares me to think that he could have ended up on medication and not been allowed to work through that. He's in fourth grade now and has self control and none of the problems he had at 6 years old. What's going to happen if we start putting more and more of these young children on psych meds?

My daughter was diagnosed at age 11[1999]without any dianostic criteria for dx-and carefully monitoed with weekly appointments. Every single week. When her eyes rolled up in her head on 15mg. Zyprexa and couldn't read; the pdoc said it was eye muscle problems, and I took her to an eye doc.Nothing wrong. Took her to the PCP he said it's the Zyprexa, give her Benydryl. She never had playdates, or sports, she spent her junior high and high school years at that pdoc office.
Weekly. I charted all of the escalating behaviors that resulted from being placed on psych meds.
I recently at age 47 was dx bipolar. I was scared to try any medication due to watching my daughter suffer.
Sadly, I now am being monitored extremely closely, due to learning from my young daughter's experiences.
It's too late for her to get her life back. Yeah, we spent time with a psych that I assumed knew what he was doing. Trust in doctors is what we are supposed to have right?
I am currently experiencing the most horrific withdrawal from 50mg. of Seroquel.
I can guarantee that no child could ever tolerate what I am feeling pysically. I barely can myself.

Read about my withdrawals neuroleptic withdrawals here

Read about my 19 year old daughter all throughout my blog She had very good care and saw the psych weekly, didn't have a life then and doesn't have one now read it here

If we start placing more children on these psychiatric medications [which have more frightening side effects than diabetes]then we stand a chance of losing a generation of children to possible brain damage, or death, and the child will grow up never knowing what life off medications could have been like. Just like my daughter. I have had to battle against mainstream psychiatric stronghold opinions that are based on an elite group of self-appointed authority, who appear to have questioned whether or not childhood bipolar disorder existed; and I would like to know why mandatory treatment with psychiatric medications approved for adults only became mainstream protocol, when there isn't even a diagnostic criteria for children and bipolar disorder. When did the exploration of the idea become set in stone that childhood bipolar exists and these fairly new meds [esp for my daughter in 1999 Zyprexa was touted as total gold standard, based on what?]were the only way to go to treat the so-called childhood bp disorder?
It absolutely makes no sense to me at all, how this became a "real" and "treatable" with a "possible cure within 10 years of my child's dx". I was told that, and promised it to my daughter; because Harvard hit it big with Pharma funding.
Guess what? It's been 8 years, that's close enough for a decade C.A.B.F. bpkids org, don't ya think?
What do you want to tell my daughter now?
Oh darn, we fucked up?

Rebecca Riley is dead. My daughter is alive.
What do we tell her?

Lisa,

Your comments reminded me of a 2nd cousin. Both his parents have PhD's from MIT. Need I say more?

Their first child, a son, was born. He is smart, but average smart, never would be stellar smart like his parents. His parents tried to make him stellar smart by putting him in every pre school for geniuses, and registered him for MIT as soon as he was born as the story goes.

This kid was just average. His brain could not grasp what mom and dad were making him study, so he threw books at the wall, and was a kid from hell. By this time he had a sister and she was and is stellar smart like her parents.

The son went on Ritalin thoughout his entire childhood. He ended up going to a college and flunking out. Now he is in the army. Now his parents realize they were in error, this kid will never be a genius. He is a good kid, with a good heart. But they thought the ritalin would help him study to become a genius.

It's a shame really. Every doc diagnosed him as ADD and what not, and all he was was a very unhappy kid.

I host another website for a friend, who runs support groups in NJ for Parents of Kids with Bipolar Disorder ( http://pokibid.org ) . It's forum is not very active, but you can see parents discussing their stories and concerns there.

I have met many parents who have told me stories. A 4-year old having spurts of rage and also uncontrollable creative phases (drawing non-stop for hours, pretty good at it too). I've talked to some of them whose 13 yr old son was suspended dozens of times. The progress that parents see makes them hopeful that there may be a good future ahead for those children.

One topic in particular is worth reading: http://www.pokibid.org/forums/viewtopic.php?t=27

I'm sure child psychiatrists have a tendency to overmedicate, just as they do for adults. They may be hasty and use the bipolar diagnosis way too often. I know most of these parents dislike the idea of using psychiatric meds on their children.

Now that I'm on a successful recovery path, I can look to my own childhood, and see patterns of depressive behavior, a couple of hypomanic periods, and social anxiety. My environment was more controlled and my symptoms were not severe enough to make life for the rest of the family a living hell. ( My sister eventually got a bipolar diagnosis, and my eldest brother committed suicide at the age of 18).

Imagine the shock that parents hear their 6 or 7yr old child talk about suicide.

Many of us who get the diagnosis in the late teens or twenties of later, definitely have trouble accepting this paradigm. ADHD was easier to accept. Why?

When I first heard about this, I was concerned that way too many children will be on these meds, and the long-term effects are unknown, and probably more disastrous than it is for us.

It's easy to pass judgment on parents and children, whose lives are in shambles until the children go on some meds. Watching the child being able to participate in school, show symptoms of reasonable development, has to be a big relief. Notice that many of these parents are still in the quest for med-free alternatives, even as they work with meds.

We take isolated incidents and try to use it as a yardstick for everyone. Lamictal comes with the warning of a deadly rash; I think it may have happened in 5% of those in the clinical trials. Most times, the rashes are benign. I got mouth sores the first time I tried Lamictal (mouth sores are even more dangerous than the SJS rash) and discontinued it. Three years later, I went back on Lamictal, with very gradual increase of doses, and now I'm on 400mg of it with no problems.

Many people use the argument that children never had these problems decades ago. They said the same thing about adults with specific DSM diagnoses too. Even I question many disorders - are they really valid diagnoses? OCD for example. A lot of people not diagnosed with it say "I am just OCD about it". But OCD does impact the lives of many people - enough to interfere with 'normal' functioning.

I just hope both sides acknowledged the wide grey area.

Sekhar,
I appreciate your post here, and talking about the parent-child forum. I spent years in a forum like that; searching for answers, just like you describe. As my daughter got older, and she fired her psychiatrist; is when we could clearly see that she 'got through' her school years, but nothing was ever 'better'. I completely understand the parental struggle as you speak about; and my quest now, in sharing my daughter's personal story, is hope that one may learn, that the meds [in her case]really didn't help as much as I believe her spirit of never giving up helped her get through.
Now that she is a grown woman--the after effects of using those medications have left permanent damage. Being used in a growing child's body, I feel she is one child who can now be an example of a really good reason to leave these psych meds as a last resort. My daughter's moods worsened and the rages became lifestyle when more and more meds were added/removed/changed.I often observed things got better on less medications; and life became a strange 'all about how this med created 'that mood' etc. Once on meds, it's hard to know 'what is the kid' or the med. In the teen years especially moodiness prevails. On medications, no one will ever know how it 'could have been' off of meds. Yes, all medications have possible horrific side effects. Even more reason to try CBT or DBT therapy first with kids. Just my opinion. [and still waiting for alternative methods to become mainstream psychiatric starting points for treatment, if in fact treatment is deemed necessary.] It's a matter of choice. Then one wonders if the child ever got to choose. Once my daughter reached age 17 she really questioned the meds and the doc, and like I said, didn't like his "live with it" answer and fired him herself.

i've written at length about the gray area:

http://www.furiousseasons.com/archives/2007/03/on_quieting_the_inbetweeners.html

Stephany,

Thank you for your insight into the issue.

Philip,

Thanks for that link. I shouldn't be hasty to sound judgmental on individual posts in your blog without following the entire sequence.

Stephany,

What bugs me most is parents who may have no qualms about putting their kids on multiple meds without paying attention to details. There is a cultural tendency to think that if the parent's life gets easier, then something is working. Again, probably a minority of the cases.

Therapy before meds, I'm all for that. My daughter went through a withdrawal period in school when she was 14-15, to the point where the school said she may be expelled if she doesn't see a therapist and get a note that she's under treatment (my daughter refused to see the school pdoc/tdoc). Her grades tanked that year, but she got out of that slump.

I'm working on minimizing my med regimen, focussing more on lifestyle changes. The difficulty is that children don't have this recovery mentality and education at that age. Add to it the peer pressure.

I mourn the years I lost to a pdoc who had me on high doses of Depakote, Lithium, Tegretol, Klonopin and Navane at the same time. I don't know how I survived those. To think that children may face this is definitely a scary thought.

You're right, I'll probably never know what it's like to be off meds, though I keep telling myself that I will try. I've come a long way, and am on low doses. A pdoc I saw for a year in NYC listened to my desire and thoughtfully told me that she doesn't see how I can manage without Klonopin; I think she's right. I may be able to manage with K.

I regret that I'll never know where my "normal" is and the spurts of hypomania and depression, which are frequent, leave me more confused.

I think of CBT as a necessary evil. Life was easier before CBT, people liked me for who I was despite the quirks. Now I'm caught in a web of self-analysis.

If my children show stronger symptoms, I'm open to consider short-term med treatment for them and teach them the lifestyle changes that helped me more. I wouldn't want them on some of the more potent meds on a long term basis.

Sekhar,
I understand what you're saying about that gray area. That's the part that bothers me so much. I'm sure that an antipsychotic would have calmed the child I was speaking of, but then what? Do we just keep loading up with more and more antipsychotics? Where does it end?

Hello,
I have a bipolar child and haqve found that the "mental Illness" categorization of his challenges is completely wrong.
I say when they have a cure, then they really understand what is wrong.
We have been working with the help of many people, alternative and traditional and my son has gone from raving lunatic to normal kid with some outbursts. No more violent outbursts and holes in the wall.
I don't remember my URL yet, just started to blog a couple of days ago. But I am on blogspot and my name there is freedoi.
We have researched this like no doctor Iknow has because we live together 24/7. Bipolar is many things but it is not necessariliy a mental illness.
I like the way medical wisdom today brushes away the incredible pain and intensity of this affliction that has exploded, no mushroomed in children (according to NY timers 6 fold incrase in the 90's) . THis should be a national issue becuase at the same time, autism, diabetes and allergy are growing.