NEWSLETTERIssue # 3: June 2010

CADDAC, The Centre for ADD/ADHD Advocacy, Canada is a not-for-profit organization that provides leadership in education and advocacy for ADHD organizations and individuals with ADHD across Canada. We thank you for becoming a member of our growing support. To recommend a friend, loved one, or colleague to become a member, have them visit: www.caddac.ca/cms/page?60

CADDAC 2nd Annual Conference - ReviewCADDAC held it's 2nd ADHD/ADD Conference on the weekend of April 24-25, 2010 in Scarborough again this year. The wonderfully positive feedback we received confirmed the conference as a great success! We continue to receive emails and phone calls from attendees, giving their many thanks for CADDAC's work and the amazing presentations.

Each of our guest speakers shared their expertise and amazing insights with all attendees, and we truly thank them for giving so freely of themselves and making this conference the amazing experience that it was.

Saturday morning began with Dr. Brown's presentation on the New Understanding of ADHD and Executive Functioning Disorder, which was followed by Dr. Laurie Dietzel, covering material from her jointly co-authored book, Late, Lost and Unprepared, A Parents’ Guide to Helping Children with Executive Functioning. Parents found these presentations enormously helpful in understanding why their children have such difficulty with working memory, organization and time management. They also greatly appreciated the follow-up workshop, offering them lengthy discussion time with Dr. Dietzel on useful strategies. Participants also had the option of attending two other workshops: Children and Adults with High IQ and ADHD presented by Dr. Brown, and

Building Your Skills as an Advocate and Transferring Them to your Child, presented by Laura MacNiven.

During lunch, our National Director, Heidi Bernhardt, presented on CADDAC's current advocacy initiatives and introduced our two new policy papers that will be sent to appropriate Ministerial and Government representatives across Canada. CADDAC's New Advocacy Tools, which will be on the web site shortly, were also highlighted.

The afternoon was just as amazing, with Dr. Kenny Handelman doing a great job of explaining how and why medication treatment works for ADHD. His presentation also included information on the new medications now available in Canada. Dr. Brown followed this presentation with a comprehensive look at ADHD when it is complicated by learning disorders and other disorders.

Sunday began with Dr. Brown presenting on the Dilemmas of Adolescent and Adult ADHD, which he followed with a new topic, now being closely reviewed by experts around the world; the Impact of ADHD on Emotions and Relationships.

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Dr. Thomas E. Brown

Heidi Bernhardt

Dr. Kenny Handelman

The morning continued with three workshops: Linda Walker's presentation on ADHD Coaching, Laura MacNiven's presentation on Educational Transitions, and Dianne Azzarello's interactive presentation on Medication as a Treatment Option.

Our attendees found our lunch presentation both entertaining and enlightening as Rick Green spoke about his experiences creating the “ADD & Loving It” Documentary and then played the documentary for the audience.

After lunch Linda Walker shared her useful strategies for a productivity makeover for adults with ADHD. The conference was closed with a bang when Rick and Ava Green shared their insight on how to make a marriage work, by not trying to change your spouse with ADHD. Of course, many tips were shared by both partners in the relationship.

CADDAC would like to express our thanks to all of our presenters, but especially those who graciously donated their time and expertise, Rick and Ava Green, Linda Walker, Laura MacNiven and our own Dianne Azzarello and Heidi Bernhardt.

Finally, the new interactive Dinner Forum and well-known Comedy Night Fundraiser was another great success; good friend Rick Green had the audience roaring, and newcomer Dave Hemstad's hilarious experience with ADD and golf had us in stitches. What a great way to wrap up of full first day of our conference and laugh with others who have ADD in their own lives.

Again this year we brought in production company, Passport New Media, to film our speakers. They are currently hard at work editing many hours of material and we hope to have the final version DVD's available for purchase in June. We hope to have this material available on our website again, but unfortunately our budget may restrict it. Our DVD's of Dr. Barkley are still available for purchase; please see the article on how to buy them, further in this newsletter.

Affordable Computers for those in Need

Guest Speakers Needed: Recent Adult ADHD Students

Computer Rescue is an organization that refurbishes donated computer systems and peripherals and donates them to families, who otherwise cannot afford it.

They supply a “package” consisting of a CPU, monitor, keyboard and mouse, and where donated, working printers, scanners and speakers all for $14. For more information, please have families contact: Patrick Chezzie paddy1@rogers.com

We have been presented an opportunity for an Adult willing to be a guest speaker to present on their experiences, as a student with ADHD, to educator candidates at a teacher education program at OISE called Special-Education and Adaptive Instruction.

If you are interested in this opportunity, please contact Shelly Murphy directly: shelley.murphy@utoronto.ca as she is instructing this course.

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Dave Hemstad

Rick & Eva Green

Laura MacNiven

New Medication Treatments in CanadaIn Canada, medication treatment options for ADHD include two different families of products: non stimulant medication (atomoxetine, Strattera™) and stimulant medications. Stimulant medications are divided into two groups: amphetamine-based and methylphenidate-based medications. Some are immediately released and others are time-released through different mechanisms.

Two new treatments for ADHD are now available in Canada: an amphetamine-based pro-drug, lisdexamfetamine (Vyvanse™) and Novo-Methylphenidate ER-C, a methylphenidate-based long acting product, just approved by Health Canada as a generic for Concerta™. A pro-drug is a drug that is administered in an inactive (or significantly less active) form and once administered, the pro-drug is metabolized in the system into an active medication.

Vyvanse

Vyvanse™ (Lisdexamfetamine) is a pro-drug and an amphetamine-based product. It contains a clinically inactive complex of dextro-amphetamine coupled to lysine. For dextro-amphetamine to be released, this product has to be biologically activated by an enzyme present mostly in blood and some in the gut. This delivery mechanism results in symptom control for 12 hours or more (12h: monograph information, 13h in a clinical trial in children and 14h in adults). This medication is highly soluble and can be diluted in water for titration if needed. This kind of delivery system is not influenced by gastric PH or transit time. Clinical effects have been described as being more stable over time for each individual and more constant from one person to the other. Because of its pro-drug design, its delivery curve is not changed by mode of administration (oral, inhalation or injection), reducing its abuse potential.

If you have experience with this product, either positively or negatively, and would like to share it with us please e-mail michelle.beer@caddac.ca with your comments. Also, please let us know if you are comfortable with us contacting you about your comments. CADDAC would like to gauge the

interest level of our members in having us do some advocacy work around including this medication on all provincial formularies. We have always advocated for all new and old medications alike being available to all those affected by ADHD equally. To do this we may need to show examples of how this medication may differ from other medications already covered on provincial formularies.

Novo-Methylphenidate ER-C (New Generic Medication)

Health Canada has recently approved Novo-Methylphenidate ER-C, a methylphenidate-based product with a time-released delivery system, as a generic substitute for Concerta ™. The actual delivery mechanism is not the same as Concerta™ and - despite attempts to find out more – we have been unable to obtain additional details on the delivery system of this medication . The visual appearance of the medication is very similar to Concerta. However, unlike Concerta ™, Novo-Methylphenidate ER-C can easily be divided, crushed and powdered, which could potentially increase its abuse potential.

Please Note!

Novo-Methylphenidate ER-C may work very well for you or your child. We are not suggesting that there will be an problem for all, or even for most people, but we believe patients have a right to know about this situation.

Also:

CADDAC is certainly not opposed to generic medication - many of the patients and families we advocate for would benefit from a cost reduction and some could afford a long-acting medication for the first time.

How Does Health Canada Approve Medications for Substitution?

As with all other generic products, Novo-Methylphenidate ER-C was made available in Canada after demonstrating bioequivalence to

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Concerta ™ according to Health Canada criteria. Simply put, the criteria requirement is that - at any given time - the amount of medication (methylphenidate) in the bloodstream must be 80% to 125% of the amount of the same medication that would be in the blood stream if Concerta ™ was taken. Health Canada made their decision in this case based on blood levels recorded in 25 healthy adults.

CADDAC's Concerns About This Process

Bioequivalence does not always mean equal therapeutic effect. What we do know is that the time necessary to obtain the maximal concentration (Tmax) is less for Novo-Methylphenidate ER-C than Concerta™ . Concerta™ peaks at 7.6 hours and Novo-Methylphenidate ER-C peaks at 4.6 hours.

CADDAC's concern is that the process used to approve substitution is not rigorous enough. We are aware of more than one instance where the generic medication failed to provide equal symptom control with serious impact to the child and their family.

At this time, pharmacists have the right to substitute an innovative or original product for a generic product and in many provinces this can be done without notifying the patient or caregiver. Some private health insurance companies may already have requested that this new generic medication be substituted for the brand name medication. Some provincial health plans have done the same. Physicians need not be notified that a medication substitution has occurred.

It is logical that close follow-up should occur when a medication is being substituted. However, in some cases, the patient may not even be aware that a substitution has occurred and could therefore not alert their physician to this.

A patient has the option to reject the proposed substitution. However, if the patient is covered by a public medication insurance program, or in certain cases, a private insurance program, he or she may be required to pay more for the original product. Physicians may decide to write "do not substitute" on the prescription.

CADDAC is therefore alerting our membership and the ADHD community about the issue.

What is CADDAC Requesting?

CADDAC is requesting that more research be required before substitution approval for a generic is given. Studies looking at therapeutic effectiveness, symptom control and possible side effects should be required in a variety of age groups. Abuse potential of a new medication should also be looked at.

CADDRA, the Canadian ADHD Resource Alliance, is suggesting that only clinical experience will help answer the questions of clinical efficacy and abuse potential. They believe that, in the mean time, Novo-Methylphenidate ER-C should be considered an additional ADHD treatment option instead of a product that can automatically replace Concerta™. Each case is unique and it is crucial to personalize treatment, taking into account the needs of the individual patient.

CADDAC agrees with this position.

We are Requesting Your Feedback on Experience with This Medication

Knowledge is the best tool that we have at this time so we are asking that if you have experience with this medication, either positive or negative, to access our comment page and send your comments to CADDAC.

TO ACCESS CADDAC's COMMENT PAGE CLICK HERE

We will be monitoring comments that are sent in and encouraging those that have had any issues to also request that their doctors contact CADDRA at www.caddra.ca

Your comments will be kept strictly confidential.

If a time arises that CADDAC deems it necessary to alert Health Canada about comments that we have received, you will be contacted first by e-mail if you have given us permission to do so. At that time we will ask if you are comfortable with any or all of your information being shared.

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ADHD Does Not Qualify a Student in Ontario to be Recognized as an Exceptional Student

For well over a year now, CADDAC had been working with a family involved in a Ontario Human Rights case that is trying to address the inequity in the special education identification system, and the discrimination against students with ADHD.

As many of you may already know, (access information under “ADHD in Schools”, on the left side bar, of the home page of www.caddac.ca for more info) at this time a student in the Ontario school system who is struggling academically due to their ADHD, and does not have an added disorder, would not qualify them to be identified as an exceptional student, giving them rights to accommodations.

This case was filed over five years ago and is now moving forward to a hearing. This family has worked tirelessly, not only to access the accommodations required by their son, but to change the system systemically for all students with ADHD.

We need your assistance immediately! Help us change the system. If you have experience with these issues;

• If you have been told that you would be wasting your time with an IPRC meeting because a diagnosis of ADHD would not qualify your child to be identified.

• If your child has been denied formal identification as an exceptional student through the IPRC process because they only have a diagnosis of ADHD and no other disorder.

• If your child is NOT receiving accommodations because the school has told you that they do not qualify as an exceptional student.

• If your child only received identification because of another disorder.

• If you were forced to pay out of pocket for a private assessment to have a learning disability diagnosed in order to receive an official designation.

• If your child has an IEP in place without an official identification.

• If you have been told that medication alone will solve your child's academic difficulties.

Please access our comment page (or paste in your browser: http://www.caddac.ca/cms/CADDAC_forms/SchoolCommentForm.php ) and send us your comments regarding your personal situation.

We will be asking you to indicate if you are comfortable in having us contact you if the need arises to move this advocacy initiative along.

Your comments will be kept strictly confidential unless you give us permission to do otherwise.

If you would like to assist with this case professionally, as another parent adding their voice, or to contact the parents involved in this case directly, please indicate this in your comment to us.

** CADDAC Needs Your Support to Continue Advocating ADD/ADHD **In our day-to-day activities, CADDAC organizes, builds and presents current, scientifically-based educational programs; actively advocates to government and institutional decision-makers for changes that will benefit ADHD patients, their families, provides one on one support and information to parents and adults with ADHD; provides networking between ADHD groups across Canada and strives to increase the awareness and understanding of ADHD on all levels. To continue providing this service to you and others, we depend on donations like yours.Please think on how we have helped you in the past, when you felt lost and frustrated, and consider donating now – please send a cheque to our address or contact us to arrange credit card payment if you prefer.Since much of our work is in the area of advocacy and lobbying, CADDAC has chosen not to become a charity. This means we cannot provide you with a charitable receipt, but please rest assured that all funds are used explicitly to further our work.

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Building a Bridge to a Better LifeBy Linda Walker

For most adults, your ADHD diagnosis is a relief (it explains a lot), and then turns into a fact-finding mission. It is essential to empower yourself with the right information. But, for too many people, the mission ends with an extensive library of ADHD books, CDs, DVDs and other information. You’re an ADHD expert, but your life hasn’t improved!

Yes, Information is Essential

We all love learning. It’s a form of instant gratification, and everyone, especially ADHDers, love that. Recently, I presented Clone Yourself: Six Essential Strategies to a Whole-Life Approach to Productivity at the CADDAC conference. Attendees learned, among other things, how to create systems that will actually eliminate boredom when doing things you hate but can’t delegate, and who doesn’t have a few of those?

But Don’t You Want a Better Life?

You deserve a pat on the back for investing in yourself and attending the conference. But if you haven’t implemented any of what you learned at the conference, your ROI, your Return-On-Investment, is less than zero. Until you dig out your notes (you planned to re-read them anyway) and act on what you learned, there’s no return; nothing has changed.

Bridge the Implementation Gap

To improve your life, you must make a change. You need to bridge the gap between knowing something and taking action. Bridging that “implementation gap” is the only thing that makes your life better. After all, you can’t keep doing what you’ve been doing and expect different results! (A wise man once said that’s crazy!)

Pick one idea. It doesn’t matter which one, but I’d suggest you work on something you find annoying, it’s very motivating! Implement the smallest possible change that makes a significant difference. Make a change that’s big enough so you’ll notice and appreciate it, but no bigger. Allow each small step to become part of your new, better lifestyle. When stretching out of your comfort zone, you don’t want to pull a change muscle. If you decide to get in shape,

forget the crash diet and three-hour workouts. Start by taking the stairs instead of the elevator. Substitute one “unhealthy food” for a healthy alternative you enjoy. When you’ve mastered those, add a small but significant step to stretch a bit more. Adjust and repeat.

Pitfalls to Avoid

Most New Year’s resolutions only last 17 days; for most ADHDers it’s even less. The biggest obstacles to bridging that implementation gap are:

• Changing too many things too quickly (You can’t lose weight AND quit smoking AND get organized all at once!)

• Radical changes that aren’t sustainable (Determined to stop being a couch potato, you sign up for the Boston Marathon!)

And when you set such ambitious objectives, you often fail and revert back to your old ways. Then you beat yourself up about it. Only change can make your life better. But only change made with small, significant steps that can become a permanent part of your life will truly improve your life.

Coaching Helps You Bridge the Implementation Gap

Training is essential, but working with a coach, either individually or as part of a group, focuses on helping you apply the knowledge you’ve been accumulating but haven’t acted on. By helping you bridge the implementation gap, coaching can dramatically change your life for the better and allow you to actually reach your goals. Whether you want to be better organized, be someone people (loved ones, friends, colleagues, customers and your boss) can count on, feel competent and in control at work or just to better manage your time, your money, or your career, reaching your goals will make you happier and more fulfilled.

ADHD Coach Linda Walker empowers Creative Geniuses (Entrepreneurs, Artists and Other Adults with ADHD) worldwide with both group and individual coaching programs. Learn more about how she can help you now at www.coachlindawalker.com.

Linda Walker also presented as a guest speaker at the CADDAC Annual Conference this April.

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Linda Walker

Tips for Parenting a Disorganized ChildBy Joyce Cooper-Kahn PhD and Laurie Dietzel PhD

Kids with weaknesses in planning and organization have trouble independently imposing structure and order on tasks and on ideas. So, they have difficulty organizing information in their heads, as well as organizing their stuff or planning out a long-term project. When faced with a task, the disorganized child may have trouble thinking through the steps required, and she may tend to underestimate the complexity and the time needed.

Does this sound like your child?• He neglects to turn in completed assignments.• She arrives at an event completely

unprepared.• He underestimates the effort involved in a

project. • She is overwhelmed at juggling multiple

classes and projects.• He has trouble identifying the most important

information.• She has trouble organizing space.

If so, there are tried-and true behavioral interventions you can try--and continue to practice--with your child to help him or her with this challenge. Here are six:

Break down tasks into component parts.For example, for a school project, divide the tasks into daily chunks, and enter these on the calendar or in an agenda book as homework. Build an extra day or two for the unexpected so your child gets in the habit of planning a cushion of extra time.

Offer organizational frameworks in advance.Discuss the most important points to be learned before the child starts an independent reading task. Provide an outline of the major topics and subtopics from the text with space for the student to fill in specific information. Offer study questions in advance so the student understands the learning objectives before starting to read.

Teach the use of tricks and technology aids.Buy a watch that can be set to vibrate and show a reminder phrase at the programmed time. When a student prints out an assignment, prompt her to also email it to her teacher. Teach a student to write a

one-sentence summary on a sticky note after reading each paragraph that he can use later for his report.

Develop templates for repetitive procedures.Make a checklist of everything that needs to be in his soccer bag. Laminate it and keep it in the soccer bag for last-minute checking. For young children, create photo charts with pictures from magazines for completing chores, preparing to catch the bus, and gathering necessary gear for sports practice.

Walk through the planning process with the child.For a child who chronically loses or doesn't turn in homework, talk through the process. Is the homework getting lost at home? Is it in the bottom of the backpack? In his locker? Is it in the right notebook but forgotten once class starts? Once you identify the sticking point, add a step to his routine to get past it.

Provide accommodations at home and at school.Simplify your child's schedule; consider reducing the number of extracurricular activities. For a high school or college student, it makes more sense to reduce the course load. Ask for advance notice of upcoming assignments from the teacher so you and your child can identify the most demanding times of the week or semester so appropriate adjustments can be made in her homework/study schedule.

Laurie Dietzel PhD also presented as a guest speaker at

the CADDAC Annual Conference this April.

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Dr. Laurie Dietzel

Tips to Help a Child with Impulse ControlBy Joyce Cooper-Kahn PhD and Laurie Dietzel PhD

Impulse control is the ability to stop and think before acting. It’s one of the executive functions children need in order to control their thoughts and actions in family, social, and school settings.

It’s important for parents to remember that young children are not expected to consistently control their impulses or their thoughts and actions. They rely heavily on adults to help them control themselves. As kids mature, we expect them to internalize rules and to develop better and better self-control so that they are not at the mercy of their impulses. However, not all children develop at the same pace as their peers in this critical area.

If you have a child who exhibits any of the behaviors below, she or he could benefit from some behavioral interventions:

• Has trouble controlling verbal impulsiveness (talking excessively, interrupting)

• Has trouble controlling physical impulsiveness (grabbing, pushing, hitting)

• Runs off in stores or other settings• Has problems doing homework

Here are a few interventions that may help.

When she talks too much or interrupts, try this:

• Teach rules she can apply in a variety of settings. For example, "When you walk into a room or join a group, first listen to see what they’re talking about. Then you can add a brief comment on the same topic."

• Offer a visual cue, such a holding up a hand traffic cop style, to indicate no talking. In a classroom, post and point to a picture of an ear, indicating "no interrupting."

• Use rewards to reinforce successful behavior. For example, if she has played quietly while you were on the phone, respond immediately by offering to play a game with her.

When he can’t stop from grabbing, pushing, or hitting, try this:

• Stop the action and do a retake: "Whoa, it’s not okay to hurt people. No hitting. I can see that you’re angry. You can say, ‘I’m mad,’ and

stomp your foot. Let me hear you say that." • Clearly lay out expectations. For example,

"Jack and Susan, you will each have a turn with the new pool toy. Ten minutes each. I’ll use my watch to keep track of your turn."

• Create a diversion. To keep a child from grabbing toy pieces, for example, as you lay them out for a game, tell him to hold on to the edge of the table while you lay out the game, and then reward him when you’re done.

When she can’t control a negative or irritating behavior, try this:

• Provide a kinesthetic "fidget" toy. Find objects that have texture, are bendy, or have other interesting qualities. "Here’s a pipe cleaner to keep your hands busy while we’re in line. You may not poke your brother."

• Plan in advance. If her restaurant behavior involves kicking under the table, seat her at the end, away from others, and tell her why you are doing so.

• Teach alternatives to the negative behavior. For example, if your child has a habit of running ahead of you in the supermarket, give her a job. Ask her to be your helper and mark off each grocery item on the list as you fill the cart.

COMIC BOOK for ADHD CHILDREN

ADDitudeMag.com has come across a great comic book for ADHD kids. Comic book, “Out of This World” has become very popular in teaching kids tips on anger management, bullying, and also motivation and inattention.

Visit their website for the full review:www.additudemag.com/adhdblogs/4/7181.html

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“BRAIN TRAINING”

For those of you who have an interest in Brain Training, you may be want to review this on-line experiment on the subject in the UK. The below is an excerpt from their near-final paper.

“ ‘Brain training’, or the goal of improved cognitive function through the regular use of computerized tests, is a multimillion-pound industry1, yet in our view scientific evidence to support its efficacy is lacking. Modest effects have been reported in some studies of older individuals2, 3 and preschool children4, and video-game players outperform non-players on some tests of visual attention5. However, the widely held belief that commercially available computerized brain-training programs improve general cognitive function in the wider population in our opinion lacks empirical support. The central question is not whether performance on cognitive tests can be improved by training, but rather, whether those benefits transfer to other untrained tasks or lead to any general improvement in the level of cognitive functioning. Here we report the results of a six-week online study in which 11,430 participants trained several times each week on cognitive tasks designed to improve reasoning, memory, planning, visuospatial skills and attention. Although improvements were observed in every one of the cognitive tasks that were trained, no evidence was found for transfer effects to untrained tasks, even when those tasks were cognitively closely related.”

To read more (& view the video), please visit:http://web.me.com/adrian.owen/site/Home.html

To view the near-final paper, please visit: http://www.nature.com/nature/journal/vnfv/ncurrent/p

df/nature09042.pdf

CADDAC Conference DVD's for Sale!

We had many attendees at this year's conference, interested in purchasing copies of the CADDAC 2009 DVD's of Dr. Barkley.The 2009 Conference DVD subjects we have available are:

Adult ADHD - Executive Functioning Impairment and Treatment, featuring Dr. Russell Barkley

The 30 Essential Ideas Every Parent Needs to Know, featuring Dr. Russell Barkley

ADHD for Educators - The Neurology of ADHD, ADHD and Education & Research to Practice, featuring Dr. Umesh Jain & Dr. Rosemary Tannock

You can buy them too! DVD's are $20 each, plus shipping costs.Just visit: http://www.caddac.ca/cms/CADDAC_pdf/DVD%20Order%20Form.pdf for our order form to place your order today.

Our production crew is hard at work editing this year's conference presentations to provide you with hours of informative material on ADHD. Keep an eye on our website to find out when these DVD's are available for purchase. We anticipate having them ready by late June.

ADHD & Pesticides

You may have heard of a recent study claiming there is a link between ADHD & pesticides.

You may be interested in reading this article: http://www.ydr.com/ci_15145609

Link to study: http://pediatrics.aappublications.org/cgi/content/abstract/peds.2009-3058v1

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