Wednesday, April 11, 2007

Leaky Brakes 101 - Part 2

It's a blustery, wet evening tonight but there was a full auditorium at Zarfas Hall as we gathered for another information session. Tonight's speaker was Rob Nicolson on the topic of medications. He gave a complete tour of antipsychotics, alpha agonists, and some other available treatments. Although his slides were full of multi-syllable words that baffle the layman, his discussion was easy to understand.

The most interesting part of the evening was the question and answer periods. There is obviously a lot of concern about giving kids medication. Parents want to be sure they are giving the right medication in the right amounts and it's an emotional topic.

What I learned from Dr. Nicolson is that, unless they are causing a definite problem, there is no reason to treat tics with medication and this has caused me to question Luke's medications. Luke is on Concerta for the ADHD, at a relatively low dose, and Risperdal for the tics, also at a low dose. Luke himself will tell you that his Tourette's isn't too bad. I've decided to ask him if he would like to skip taking the medication for the tics on the weekend to see how he responds. At twelve, he is old enough to make the decision for himself.

Once again, I am struck by how all diagnoses flow into one another. When we first started dealing with the doctors, I thought it was an either/or situation. Then different doctors put different labels on my child and each one stuck. I guess I thought they were sharing the diagnosis. As I did more research I learned that these conditions, Tourette's Syndrome, ADHD, and Obsessive- Compulsive Disorder, are all related. But these Leaky Brake sessions are really bringing it home for me. I predict that one day the doctors will invent one label to describe all these disorders.

Two other important points were made at tonight's discussion, medicate one thing at a time and "pills don't teach skills". When a child comes in for treatment, Dr. Nicolson works on the most severe symptom first. He believes in treating one thing at a time so you can see if the treatment is working and if there are any side effects. This makes a lot of sense to me and is part of the reason I want to see how Luke does off the Risperdal, since he started it at the same time as the Concerta. Finally, as Dr. Dunc told us before, the medications don't teach behavior. They just help the real intentions of the child shine through and they also give an opportunity for the child to learn better behaviour.

Dr. Dunc gave Luke a couple dozen of these business cards to help him explain himself to strangers. They demonstrate that we can choose to see this glass as half-empty, or half full.


  1. That card is great! I wish you all well as you continue to surf these waters.

  2. Seems that you're dealing with these problems very sensibly and logically -- and using your resources well. That's an amazing card, too, empowering and educating rather than stigmatizing. There are at least two ways to view all these issues when you take a good look at them. We all need to learn much more. Thanks for your help in this direction.

  3. Vicky6:36 am

    The card is a great idea. It'd be neat to take it even one step further. When you read down through the card, it ends with, YOU can choose to see this side of me, or my other side!" Wouldn't it be cool to flip the card over and find something like

    (Child's Name)
    expert skateboarder, skilled cartoonist, able to play the Star Wars theme on the saxophone, etc.

    You know, see the other side of the car and have it give people a list of ideas about this person in front of them other than the brake situation....

    Just a thought. I know it'd make seguéing into an ordinary conversation easier for me....

  4. Good for you. I absolutely agree that Luke is old enough to make his own decisions, as far as trying a med or stopping it. I like the cards to hand out. People need to have information, and given in a nonaggressive way. A card they can read quietly is an interesting approach that goes right to the brain, with nothing but their inner voices leading the way. Very interesting blog entries, thank you.

  5. How wonderful that there are more options for parents and kids these days with these kinds of challenges. Luke will no doubt blossom under such conditions. :-)

  6. Just happened to find your journal, My son has TS, ADHD and OCD. Check out if you want to check out our story.

    We just had the same conversation with the psychiatrist on Friday about who rather than medicating for the tics, he would like Chris to learn skills on how to handle the tics. He too is on Concerta. He is 11 years old. BTW love the cards as well. So we made a decision to not go with tic medication, and try and teach some strategies.

    Anyway just wanted to say Hi from New Zealand :)


    1. Web site in this post has expired. :(

  7. Thanks for posting this. Your two points that you took away from the meeting were what I needed to read tonight. I've been trying to concisely define my philosophy on medication since so many people ask me about it at my blog. I'm familiar with the "Pills don't teach skills" meme, but it was the advice to medicate one thing at a time that was what I really needed to read.
    Thanks! If I had followed that advice 15 years ago I might not be disabled today. Too often doctors succumb to the urge to send patients away with armloads of samples and prescriptions for all ailments. The problem is that side-effects and efficacy are sacrificed by this shotgun approach. I don't think the Doctors mean harm by it, but they should really know better.

    I've now put up my philosophy on the subject on my blog. I'll post it hear for your convenience. You really helped me out with that last bit:

    1) Cognitive Behavior Therapy is a fantastic alternative to medication.
    2) If you need to medicate, medicate one thing at a time.
    3) Be careful! Medication can have lasting side-effects.
    4) Always remember that pills don't teach skills

    Good luck with your boy. Be careful of the side-effects. And congratulations for having the strength to evaluate the problem on your own. I wish you well with your new regimen.

    The Splintered Mind