Dimitri Papolos, M.D., Addresses NAMI North Carolina Conference

NAMI North Carolina was pleased to feature Demitri Papolos, MD, as the keynote speaker at our annual spring conference on April 1 in Raleigh.  As most of you know, Dr Papolos and his wife, Janice, wrote the bestseller, “The Bipolar Child.” This book has been a life-altering resource to parents of children with early-onset bipolar disorder.   

Dr Papolos is the Director of Research for the Juvenile Bipolar Research Foundation (JBRF).  A study of 400 affected sibling pairs at JBRF seeks to identify the genes responsible for bipolar disorder (BPD). Dr Papolos said recently that once the study identifies the genes involved, “the specific pathways in the nervous system that are affected by the protein product of the gene(s) will come into high relief.” 

Another major project of JBRF is to develop accurate, valid diagnostic criteria for identifying early-onset bipolar disorder. The current criteria in the DSM-IV does not speak to how the disorder manifests in children. It is based on adult-onset. Children, we know, are more often rapid cyclers. According to Dr Papolos, 80% of children between the ages of 7 and 18 with bipolar disorder experience multiple cycles in one day. That means they go from feeling manic to feeling depressed several times during the day. The adult criteria for mania includes duration of one week.  

Dr Papolos has developed a new “core phenotype - a set of symptoms and behaviors” that is currently being tested and evaluated to help diagnosticians identify children with juvenile-onset bipolar disorder. The three major divisions of this core phenotype currently are: 

v     Episodic and abrupt transitions in mood plus rapidly changing levels of arousal, emotional excitability, sensory mode sensitivity, and motor activity. Mania/hypomania, anger, depression, and anxiety are the four major mood states. Mixed episodes occur when children experience an overlapping of mood states.  

v     Poor modulation of drives. This can include aggressive behavior, self-destructive behavior, intense sexual feeling or behaviors, poor self-control demonstrated by excessive buying and hoarding of items, and an excessive craving of carbohydrates and sweets. These behaviors would be present most days over a period of 12 months with impairment in one or more settings. 

v     At least four of the following, present over 12 months:

o       Excessive anger

o       Oppositional/aggressive responses

o       Poor self-esteem regulation

o       Sleep/wake cycle disturbances

o       Low threshold for anxiety

o       Low threshold for arousal

o       Executive functioning deficits 

How do these behaviors translate into everyday language that describes the behaviors parents witness at home or teachers report at school?  Parents and teachers describe children who make relentless demands (“I want it and I want it now!”). They often provoke others. Dr Papolos describes destructive rages when the child totally loses control, becoming bossy and demanding, even intimidating. These rages can last from 45 minutes to 4 hours and are a hallmark sign of childhood-onset bipolar disorder.  

Poor self-esteem regulation is seen when a child goes from feeling grandiose (“I can do anything!”) to feeling like he or she is the worst person in the universe (“Everybody hates me.”) 

How can we identify when a child is experiencing mania? This child could be giddy, silly, talk excessively, have many ideas at once, be irritable, interrupt others a lot, and be easily excitable. 

These children also experience disturbances in sleep which include night terrors with gory images, and sleepwalking and themes of violence and mutilation. Unlike most of us, when they have a nightmare, they do not wake up before being attacked. Then when it is time to wake up, these children experience what they call “sleep inertia.” They cannot wake themselves up easily and only become fully alert by around 11:00 AM.  

One other criteria has been identified in a separate analysis - fear of harm to self or others. This would include the fear that harm may come to oneself and the fear the child with BPD may harm someone else0. Parents often mention that their child experiences this feeling. 

In the next issue of Insights, we will examine executive functioning deficits in detail. This is a term we hear often describing children and adolescents with brain disorders.

Source: Demitri Papolos, M.D., “Juvenile-onset Bipolar Disorder: Under-diagnosed, Under-treated, and Under Discussion,” April 1, 2005, NAMI North Carolina Spring Conference       

Teaching What Matters 

Wouldn't the world be a better place if our kids hung on our every word?  If they worshiped our wisdom and lived to do everything we told them to do? 

Probably not, but it's easy to feel that way.  And it's so tempting to try and impart our gems of wisdom as they come to us.  Often we do exactly that, as if we were applying post-it notes to our kids' bodies, expecting them to keep each note handy and reach out and find exactly the right advice at the right time. 

Like that's going to happen. 

So do we always have the right to get frustrated when they do something we've told them not to do - or fail to do something we now expect of them?  For many kids, I think getting ad hoc advice as it pops into their parents' heads must be more like getting peppered with pebbles.  The pebbles are annoying and most of them just bounce off. 

This all came to mind as my wife and I talked with our son, who has Asperger’s Syndrome, on the last day of his winter college break.  We were bursting with advice and ideas on things Drew could do to improve his study habits, keep his room cleaner, store his clean laundry differently and on and on. 

We had our advice pebble slingshots out and had started peppering our son before we came to our senses and got realistic. We wound up talking about just a few things we'd like him to do differently and discussed practical ways he could make these changes. 

This was much more in line with the way his brain absorbs information.  Like many kids, he has a hard time changing habits he's developed over a long time.  A habit is like a template in your head.  If you want to change the behavior, you have to rewrite the template - and that takes time and effort. 

So it makes sense to pick the most important habits you want your child to learn -- or to unlearn - and work on them one at a time.  One of the things we focused on while Drew was home this college break was using email.  He routinely uses instant messaging to talk with his friends, but has had a hard time remembering to check his email on a regular basis.  This was not only frustrating to us as parents, but had the potential to cause problems at school.  His college instructors and administrators often communicate with students through email.  So not checking email meant risking not knowing about assignment changes or school announcements. 

Our solution was to send him emails while he was home and remind him to check them every day to help him get in the habit.  Also, when I drove him back to school, we set up his computer to automatically open his email program every time he turned on his computer as a reminder to check for messages. 

My wife and I were delighted when he began promptly responding to ouremails -- and ecstatic when he began generating his own.   We heaped on the praise in subsequent email messages. 

That's important too.  Sometimes it’s easy to use on our kids what we used to call "exception reporting" when I worked for the phone company.  "Exception reporting," means only getting a report when something goes wrong.  If your kids only hear from you when you're telling them what they need to change, you're probably not a lot of fun to be around.  You may also get tuned out a lot. 

We've found some of the most important things to work on with Drew involved safety skills and self-advocacy skills.  Safety skills include more than avoiding physical danger.  We've talked with him about scams and not giving out personal or financial info on the Internet.  We've also talked about how he needs to approach his instructors to make sure he understands assignments and knows what he needs to focus on to do the best possible job in a course. 

Yes, we'd like his room to be neater and cleaner, but as long as he's not breeding deadly E. coli or typhoid, we're not likely to start staging surprise inspections. 

The cliché's "pick your battles" and "don't sweat the small stuff" have their roots in sound reasoning.  Think about the skills that are most important for your son or daughter to learn to live independently.  These are probably the most important things you can work on.  And it's much easier - as we've learned - to work on these things while your kids are still living at home. 

It's never too early to identify key life skills and start practicing the most important ones.   Working consistently on these "core skills" will be much more effective than just peppering your kids with advice as it pops into your head. 

As for all those unused pebbles of wisdom, I'm thinking of using mine to build a life-size replica of the Great Wall of China.   Now if I can just figure out what to do with all the leftovers. 

About the author:  Dan Coulter is the writer/producer of a series of Asperger's Syndrome-related videos, including: "Asperger’s Syndrome Dad: Becoming An Even Better Father To Your Child With AS."  You are welcomed to join his email list at danielc2@att.net.  

Copyright 2005 Dan Coulter

All Rights Reserved    Used By Permission 

“Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Of talk about their feelings? Or manage their feelings in constructive ways? What of people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.”

From THE WORLD ACCORDING TO MR ROGERS by Fred Rogers. Copyright © 2003 Family Communications, Inc.

Reprinted by Permission of Hyperion

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