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VOLUME 4 | ISSUE 53 Spring 2009A T L C P U B L I C A T I O N
touchina publication of the trichotillomania learning center
volume 6 | issue 64 winter 2012
Editor's note: Recently the internet and parent message boards were abuzz about a possible link between Strep infections and the develop-ment of OCD, Tourette's Syndrome and, by default, trichotillomania. We asked TLC Sci-entific Advisory Board member Dr. Jon Grant and his colleague Brian Odlaug to help us understand how this research applies to BFRB onset.
Published evidence indicates a possible etiological association between group A beta-hemolytic Streptococcus (GABHS) infection and a subset of individuals with obsessive compulsive disorder (OCD), To-urette’s syndrome and autism. The research suggests that antibodies that develop against a subgroup of Streptococcus pyogenes may cross-react with human brain tissue in ge-netically susceptible children. It has been hypothesized that some individuals develop OCD, Tourette’s Syndrome, or autistic spectrum disorders as a result of this post-infection autoimmune response. Some ani-mal research also supports the hypothesis that some neuropsychiatric syndromes may be triggered by direct action of GABHS-associated antibodies on the brain.
Many individuals with trichotillomania, therefore, have questioned the possible as-sociation of hair pulling with infectious causes. This question has arisen due to the research concerning OCD and the phe-nomenon known as PANDAS. To address the question of trichotillomania’s relation-ship to PANDAS, a brief review of the PANDAS literature, and its limitations, is required.
What is PANDAS?PANDAS is an acronym for ‘Pediatric Autoimmune Neuropsychiatric Disor-ders Associated with Streptococcal Infec-tions’ and is a highly publicized and con-troversial issue amongst clinicians and researchers. PANDAS describes the state of onset of neuropsychiatric illness, most commonly OCD or tic disorders, in chil-dren following recurrent GABHS phar-yngitis (what we commonly refer to as ‘strep throat’). Coined by Susan Swedo and colleagues in 1998, PANDAS defines a subgroup of individuals with OCD or tics who have five core characteristics: 1) the presence of OCD and/or a tic disorder; 2) onset of symptoms before puberty; 3) abrupt onset of symptoms or a pattern of dramatic recurrent symptom exacerba-tions and remissions; 4) association with neurological abnormalities (e.g., motoric hyperactivity, choreiform movements, jerks of the extremities, slurred speech, clumsiness, handwriting deterioration); and 5) a temporal association between GABHS infection and OCD/tic onset
Inside this issue:- Upcoming Events - Advice for Parents
- National Conference
- Directors' Reports
and more...
PANDAS: Association with Trichotillomania?Jon E. Grant, JD, MD, MPH, TLC Scientific Advisory Board MemberBrian L. Odlaug, MPHUniversity of Minnesota, Minneapolis
Treating the Whole Person: A Personal User’s Guide, Part TwoRenae M. Reinardy, PsyD, LPLakeside Center for Behavioral Change, PCFargo, ND
As we bring in the New Year many people have the goal of making a significant change in their life. If you struggle with a body focused repeti-tive behavior (BFRB), that goal might be in-creased control over picking or pulling. In Part One of the Personal User’s Guide, we discussed how building a healthy foundation through nutrition, exercise and sleep are important to good health and decreased urges. We also looked at the balance of how we live our life in comparison to how we would like to spend our time and energy. Spirituality was also briefly discussed as a tool to improve our experience. Any one of these areas could be the focus for changes in 2012. Do not overwhelm yourself, narrow your goals to what makes sense to you. The purpose of the Personal User’s Guide is to serve as a self-guiding compass. It is not a final destination, but a process of change.
Here are some other things to consider in plan-ning your route in your personal change process.
My MindWe are all actors in our internal soap operas. Our thoughts are incredibly powerful, yet we tend to just accept our internal script without much editing. Cognitive behavioral therapists encourage the process of cognitive restructuring. This involves identifying, challenging and re-placing thoughts that are not true or helpful to us. It is good to look inside of your mind to make any helpful editorial changes to your internal script about BFRBs. Thoughts can in-volve perceptions of self control, permission-giving thoughts, perfectionism, and/or social judgments to name a few. Just like a soap opera, there tends to be many areas of dialog that can use some editing to more accurately reflect reality.
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InTouch is the quarterly publication of the Trichotillomania Learning Center, Inc.To submit articles or send letters write to:Trichotillomania Learning Center207 McPherson Street, Suite HSanta Cruz, California 95060(831) [email protected] Editor: Leslie Lee
Copyright © January 2012. All Rights Reserved.Text deadline next issue: March 7, 2012.The information in this newsletter is not intended to provide treatment for Trichotillomania or Skin Picking. Appropriate treatment and advice should be obtained directly from a qualified and experienced doctor and/or mental health pro-fessional. The opinions expressed are those of the individual authors.
TLC Board of DirectorsJoanna Heitz, PresidentJacki Abrams, SecretaryDeborah M. Kleinman, TreasurerNancy J. Keuthen, PhD, Scientific Advisory Board ChairAmy BuckmanDana Marie FloresDavid PerlmanNancy PerlmanErin Sheepo
StaffJennifer Raikes, Executive DirectorChristina S. Pearson, Founding DirectorAlice M. Kelly, Membership Services/Accounting ManagerLeslie Lee, Program Coordinator/EditorDana Hickerson, Administrative Support
TLC is a 501(c)(3) tax-exempt organization and all contributions are tax-deductible. Our Tax ID number is: 77-0266587.
Early last December, 11-year-old Chloe from Minneapolis posted a youtube video soundtracked to one of her favorite songs. Within a few days days, the video had over 100,000 views! The virality of this video was sparked in large part by the songwrit-ers re-posting the video to their own websites and Facebook pages.
Also last month, 15-year-old TLC member Claire Cameron was featured in a national teen magazine. The focus of the article? Trichotillomania. Again, the web was buzzing about Claire's recovery story—from Facebook to blog posts to message boards.
These are just the two most RECENT stories I have about young people standing up, standing proud, and demanding a difference for themselves.
The explosion of Chloe's video inspired a slew of video responses. Claire's bravery inspired many other teen girls to speak up about trich in their own communities. These girls aren't going to be shamed by this disorder. Instead, they are doing their part to make sure future boys and girls aren't shamed either.
I say we honor the bravery of these young women by making 2012 The Year of Making Noise. It doesn't take much to create some BFRB buzz in your local community....drop off some brochures at the local college health center. Or donate a copy of Bad Hair Life or Hair Pulling Habit and You to your local library. Maybe you are ready to be a bit more public: post a link to trich.org on your Facebook page, host a local meet-up for trichsters and picksters, pitch your story to your local paper or weekly arts rag, or even make your own youtube video. I want to know how YOU are inspired to make some noise this year....If you need some ideas, give me a call!
On another note, registration is now open for the Annual Conference, May 4-6, in Chicago. One of my favorite cities, Chicago is always welcoming to TLC, and I am certain this conference will be our larg-est ever. Be sure to turn to pages 8-9 for the registration info, and visit our website for a full preview of all the available workshops. With nearly 500 attendees in 2011, and Chicago's's propensity for record-breaking, 2012 is not a year to skip!
If Chicago is not in your cards for the year, we have a host of other events coming up, all across the country. I hope to see you at one of them.
Cheers to a healthy and happy 2012!~Leslie
From the EditorLeslie Lee
The Trichotillomania Learning Center’s mission is to end the suffering caused by hair pulling disorder, skin pick-ing disorder, and related body-focused repetitive behav-iors. We envision a world where:
• Body-focused Repetitive Behaviors (BFRBs) are diagnosed quickly.• BFRBs are not a source of shame.• Knowledgeable treatment is available to all people with these disorders.• Treatments are more effective and eventually cures are found.• Information and emotional support are available to people of all ages and their families.
Upcoming Events & AnnouncementsSilver Spring, MD One-Day WorkshopFebruary 11, 2012, Silver Spring, MDLearn real tools for recovery with the authors of The Hair Pulling Habit and You, and BFRB treatment experts Ruth Goldfinger Golomb, MEd, and Sherrie Mansfield Vavrichek, LCSW-C, when they join TLC Founder and recovered puller/picker Christina Pearson to help you end the cycle of shame and isolation.
Presentations for adults, teens and parents will cover impor-tant new research findings to experiential hands-on exercises that can help shift perspectives. This one-day session offers a powerful educational experience for sufferers, family mem-bers, and interested professionals. Develop new insight into WHY it can be so difficult to alter these behaviors, and also learn about emerging understanding of more effective ways to both live with, and heal from, these problems.
When: Saturday, Feb. 11, 2012, 10:00am - 5:00pmWhere: Crowne Plaza Hotel, Silver Spring, MD 20910For more information, visit http://tlcmd2012.eventbrite.com or call 831-457-1004.
TLC's Annual ConferenceMay 4-6, 2012 | Chicago, ILRegistration is now open for THE largest event focused entirely on hair pulling and skin picking disorders. Turn to pages 8-9 for more information on this year's program.
Non- TLC Events:
Winter Park, FL Workshop with Cheryn Salazarhosted by Mary Travis, PhD February 18, 2012Join author, trichster (and parent of 2 trichsters), and founding TLC member Cheryn Salazar for a day-long workshop on learning to cope with the emotional and physical aspects of hair pulling disorder. Open to those with hair pulling or skin picking disorder, parents, spouses and/or support persons.
When: Saturday, Feb. 18, 2012, 9:00am to 5:00pm Where: St. John Lutheran Church1600 S. Orlando Ave. (US HWY 17-92), Winter Park, FL
Cost: $85.00/personFor More Information: Contact Dr. Mary Travis, Travis Psycho-Educational [email protected]
Volunteer OpportunitiesOnline Support Group Moderators
Under the direction of Christina Pearson, Online Support Group Moderators will assist staff with the moderation of TLC's various online support groups. Volunteers should be a current mem-ber of at least one of TLC's online support groups, be fluent in internet-group protocols, and available for approximately five hours a week. Duties include daily approval of new mem-bers, monitoring posts each day, reporting questions, issues, or problems to TLC staff when they arise.
Salesforce Database Developer
Hone your Salesforce Database skills and build your developer portfolio! TLC is seeking an experienced Salesforce developer who can assist staff in the development of customizations and extensions of Salesforce. This volunteer would work directly with TLC Membership Services and the Executive Director to help TLC improve its use of Salesforce and relevant applica-tions.
Office Volunteer Intern
TLC needs a volunteer to assist with day-to-day operations at TLC Headquarters in Santa Cruz, CA. Volunteer duties will vary from administrative work to event support, plus special projects as assigned. The ideal candidate lives in or near Santa Cruz, CA, and is available approximately 5 hours per week. Duties include: • Data entry, filing, copying and related office tasks• Internet research• Administrative support
For students in the South Bay Area, TLC offers internship and senior project opportunities in the areas of PR & marketing, event planning and nonprofit management.
For more details on these positions, or to apply, visit:http://www.trich.org/involved/volunteer.html or call Leslie at 831-457-1004.
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Young TLC Member Featured in National MagazineTLC Staff
Three months ago, 15-year-old Claire Cameron went out in public with her own full head of hair.
No more scarves or extensions, and no more Hair Club wigs.
Over the past year, Claire managed to grow back her own hair. There were several events that led up to this transformation, starting with a trip to Hair Club for Men and Women and the TLC Conference in Dallas (2010).
Hair Club gave Claire the confidence she needed to start-ing enjoying her life again. At the TLC Conference, Claire and her family realized they are NOT alone, and they had the opportunity to meet Ruth Golomb, MEd, LCPC. Ruth is co-author of The Hair Pulling Habit and you, and Stay Out of My Hair: Parenting Your Child with Trichotillomania as well as a faculty member of TLC's Professional Training Institute. It was about a year ago that Claire had her first appointment
with Ruth Golomb, LCPC, and that changed everything. We think that her story of recovery is amazing and a reflection of her strength and courage.
Last month, Claire was featured in the popular teen maga-zine, J-14. She has shared her story with all of America, and has become an inspiration for young people, both with and without trich. Claire, along with her mom Brenda, recently held a fundraising event at their home, where they raised near-ly $1500 for TLC's scholarship program. Inspired by the im-pact of the TLC Conference on their lives, Claire and Brenda wanted to help others experience the power of community and education that is available at TLC events.
"... never forget that you don’t have to be the smartest in your class; you don’t need to be the fastest runner in your grade; you don’t need to have perfect hair. It is not what is on the outside that counts; it is what is on the inside that really matters. One day everyone in this
room will understand what that means. Carry your head high and be proud in who you are." --Claire Cameron, a very-wise-beyond-her years-teen.
Claire's feature article in the January issue of the pop-culture magazine, J-14. J-14 stands for Just For Teen, featuring articles, celebrity interviews,photos, movie reviews and fashion for teen girls.
Advice for Parents Leslie Lee
TLC Program Coordinator
There are times when it seems like BFRBs may take a bigger toll on parents than the young trichsters. Hair pulling and skin pick-ing challenge core parental instincts; these behaviors force par-ents to let go of expectations about how our children will be. It’s easy to make mistakes when reacting to a child’s behaviors, and then later beat ourselves up over these reactions.
We already know that pressure, guilt, and punishment are inap-propriate responses to a child’s BFRB behavior. But there is the other part of us that “knows better” and wants to make therapy a requirement, or seek reassurance that our child didn’t pick that day, or no, that’s not a new bald spot.
TLC recently polled its online email support groups and Face-book fans, with the question, “What things did your parents do that helped or hindered your trich recovery as a child?"
Here’s what our online community had to say:
1. Don't tie huge rewards to whether or not your child can "stop pulling for a whole month." Imagine the disappointment they will carry with them for the rest of their lives, that they weren't able to get that puppy, or go to Disneyland because they couldn't stop pulling for more than a week. Keep the rewards (and the behaviors you reward) do-able so you don't set them up for failure. For example, "If you use your strategies 3 times this week we'll go get ice cream." Most kids can use 3 strategies, and ice cream (or no ice cream) isn't the end of the world.
2. Don't ask "Did you pull out your hair today?" the moment they get home from school. I have had dozens of children tell me that this makes them feel terrible, and makes them want to pull out their hair more.
3. Don't invest huge amounts of money in therapy and then say little things that imply your child is wasting your money. The better solution may be to hold off on therapy until they are a little older and self-motivated for therapy.
4. Love me for who I am inside, not how I look outside. Make sure I know this, too.
5. When I say, "I don't know when/why/how I pulled," I really don't.
6. When I say, "I can't stop," I really don't know how to stop.
7. As a child, and even today as a 28-year-old, when I'm pulling, my parents tell me to stop and I just want to tell them to shut up because I am aware of it. I know I'm doing it. I just can't stop. But they just can't seem to understand that. Or they try to give me alternatives and I get sick of hearing it. Why don't you wear a hat? What if you had a bracelet on that you could play with instead? Nothing is the same and they just don't realize it.
8. If you act like it's not a big deal, that is, you talk about it like it's just "another one of those darn things" turns out, it doesn't feel like such a big deal. Kids trust parents. If mom doesn't make me feel creepy or broken, then I mustn't be. Less anxiety about it lends to less pulling. Under no circumstances ignore it--that's my tip for parents, as someone who was raised by someone who did the exact opposite.
9. Stop pointing out the gosh darn pimples! Half the time they're only visible BECAUSE of the picking! And don't stand outside the bathroom door like a guard. It only causes embar-rassment and shame. Knock quietly and then walk away.
10. Stop saying "You used to have such pretty hair, I don't know why you pull it out" or "Why don't you just stop?" My step-mom used to introduce me to her friends as "the problem child."
11. What helped was talking about it at a time when I wasn't caught red-handed! Helping me try to figure out way to avoid doing it (wearing hats and gloves while watching tv).
12. My acne problems only exacerbated my picking. As a teen, my counselor suggested my parents take me to a dermatolo-gist for acne treatment rather than skin picking help. It never occurred to any of us that a dermatologist could make a differ-ence. Turns out, when you have fewer pimples, you don't pick your skin as much!
13. My mum encouraged me to wear cotton gloves when I went to bed. It definitely helped.
Bottom line: Your children want your approval, and they don't want to disappoint you. They love you and want to know that your love is unconditional - not tied to the number of hairs they pulled that day.
Thanks to everyone who contributed their thoughts!
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For the last twenty years, Christina Pearson has devoted herself to improving the lives of people suffering with trichotillomania, skin picking, and related disorders. In this age of the internet, it may be hard to fathom just how little help or information was available only two decades ago. Before Christina founded the Trichotillomania Learning Center (TLC) in 1991, there was no place for people to get reliable information about these disorders, no way for sufferers to meet each other, and no one bringing together clinicians and researchers to im-prove understanding and treatment.
With few exceptions, Christina and TLC have played a vital role in all the advances that have taken place in this field since that time. The tenacity and creativity she has shown in her own successful struggle with hair pulling and skin picking only make her more of an inspiration. There is much work left to be done: the ignorance and suffering that surround these disor-ders is still profound. But the progress we have made is great. Christina has personally been responsible for transforming the lives of many thousands of people around the world, and she has laid the groundwork for the change still to come. She is truly my hero. And in that, I am not alone. - Jennifer Raikes, Executive Director, TLC
FOUR Great Ways to get your recommended daily dose of Christina!
Read Christina’s story in her own words: www.trich.org/tlc/founder.html
Receive Weekly Texts from ChristinaPersonal messages of support, motivation, and inspiration straight to your phone or inbox every Monday. Sign up online: www.trich.org
"Please let Christina know that her weekly texts are a really wonderful way to stay connected to the TLC com-munity and the self-awareness needed to stay pull-free."
"...have been getting the weekly text messages and they have REALLY helped me stop pulling my hair (up until about a week ago I was pull-free for over 7 MONTHS! Which is awesome for me). The text messages are great reminders-- not only the message they send but that I am not alone in my struggle."
Purchase Christina’s book PEARLS: Meditations on Recovery from Hair Pulling and Skin Picking Available online: www.trich.org or by phone: 831-457-1004
"I can't recommend this small book highly enough to anyone with the conditions it addresses (chronic hair-pull-ing and skin picking). Christina's poetic take on self-care, healing, and awareness will apply to anyone doing their best to evolve, and seeking patience with the process. There is no one who would not benefit from reading this book. Lyrically written. A style reminiscent of no one else. Truly unique voice. Give it to anyone in recovery."
"This is not a pragmatic discourse on the treatment of Trich, this is a small book, that if read slowly, provides nurturance, succor, and a portal to self discovery. As a psychologist who treats Trich I am delighted to include this book in my professional library and to recommend it to my clients."
Meet Christina at the TLC Conference, Retreat, or a One-Day WorkshopSilver Spring, MD: Feb. 11 | Chicago, IL: May 4-6 | near Santa Cruz, CA: Sept. 20-23
"What an absolute treat to have a full day of Christina pearson speaking! I have been to two conferences and a retreat, this workshop was one of my favorites!"
"I was so thrilled to meet Christina Pearson! She is my hero! I aspire to be like her."
" Excellent presenter! Christina (is) funny, intelligent, and very well-spoken. I truly enjoyed her presentation."
Get to know…Christina Pearson, TLC Founding Director & Recovered Puller & Picker
ON THE NATURE OF UNDERSTANDING
Say you hoped totame somethingwild and stayed
calm and inched upday by day. Or even
not tame it butmeet it halfway.
Things went along.You made progress,
understandingit would be a
lengthy process,sensing changesin your hair and
nails. So itsstrange when it
attacks: you thoughtyou had a deal.
-Kay Ryan
“On the Nature of Understanding,” Copyright © 2011 by Kay Ryan.
Used by permission of Grove/Atlantic, Inc on behalf of Kay Ryan.
Kay Ryan won the Pulitzer Prize for Poetry this past year, and served as the U.S. Poet Laureate from 2008-2010. This poem was re-cently published in The New Yorker magazine. It grabbed my heart when I read it there and is now pinned to the wall above my desk. I am delighted that we were given permission to republish it here.
–Jennifer Raikes
Peer-based support groups moderated by TLC Staff:
ParentsStay in touch, ask questions, meet other parents, and receive support for those times that are difficult. When a question comes up that we cannot answer, we will refer the question to the appropriate professional and encourage them to respond.then we will share this with the group. http://health.groups.yahoo.com/group/ParentsTrichSupport
TeenTrichSupportA safe, non-judgmental email group for teens to share feel-ings, strategies, and support on the road to recovery from trich. Come meet others who know EXACTLY how you feel! This teen group is moderated by TLC to ensure safety.http://health.groups.yahoo.com/group/TeenTrichSupport
Trichsters: Kids with TrichThis is a list for KIDS WITH TRICH, and if you want to talk to oth-er kids about it, then you have come to the right place! Share with others, learn new strategies for stopping behaviors that you don't like, and make new friends! This list is moderated by some Moms from the Trichotillomania Learning Center's (TLC) ParentsTrichSupport email list and Christina Pearson, Founding Director of TLC. If you are a young person and would like to join this list, we recommend your parent be a member of ParentsTrichSupport.http://health.groups.yahoo.com/group/trichsters/
Two Groups for AdultsAdult Hair Pullers
http://health.groups.yahoo.com/group/TLCTrichSupport/
Adult Skin Pickershttp://health.groups.yahoo.com/group/TLCDermSupport/
These adult sufferer groups each offer a safe and non-judg-mental place to share ideas, strategies, difficulties and suc-cesses. We encourage you to ask questions and share insights. Hair pulling and skin picking are, for most, disorders of isola-tion. Recovery is strongly supported by building bridges of communication, both to ourselves and to others. Members of these lists are at all levels of experience: some just starting in picking behavior, others suffering for years, some with years of recovery, and some just beginning the process. Remember the goal is Support, so be gentle with yourself and others.
TLC_Moderated Email Groups
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Full Conference Attendance: Friday, May 4 - Sunday May 6, 2011Includes:Choice of 50+ workshops and activities | Friday evening receptionRefreshments on Sat. & Sun. | Saturday Plated Dinner
Member Early -Bird RegistrationBefore March 30
Member Late RegistrationAfter March 30
Non-Member RegistrationBecome a member and save:
Visit www.trich.org or call 831-457-1004
Adult: $295 x _________ $395 x _________ $495 x ________
Child (under 18) $235x _________ $335 x _________ $395x ________
Contribution to Event Scholarship Fund (to assist with registration fees for the disadvantaged)
_________ _________ _________
Full Attendance Total:Supporting, Patron and Lifetime members: deduct 10% from your total
OR Partial Attendance: select each session you plan to attend.
Friday Evening, 6:00pm - 9:45pm $75 x _________ $75 x _________ $95 x _________
Saturday AM, 8:15am - 1:00pm $105 x ________ $105 x ________ $125 x ________
Saturday PM, 1:00pm - 9:30pm (includes dinner & evening activities) $125 x ________ $125 x ________ $145 x _______
Sunday AM, 9:00am-Noon $75 x ________ $75 x ________ $95 x _________
Individual Workshop(s) $45 x ________ $45 x ________ $55 x _________
Partial Attendance Total:
Registration InformationAttendee Names
(please specify if each attendee is an adult or child with TTM or skin picking, a parent, health professional, sibling, or other relationship)
Credentials(if applicable)
Age
Is this your first TLC Conference? ____ Yes ____ No Do you request vegetarian meals? ____ Yes ____ No
Mail-in Registration Form
Please select a payment option:
Check or money order enclosed (US funds only) Charge my credit card: (we accept all credit cards) Amount to be charged: $____________________________
Card number:__________________________________________________________________________Exp. Date:__________________3-Digit Security code _____________ (from the back of the card. American Express users, please provide the 4-digit number from the front of the card)
Cardholder’s Name: _________________________________________________________Authorization Signature:_________________________________________________
Address: _______________________________________________________________________City ___________________________________________________________
State ______________________Zip______________ Email ___________________________________________________ Phone: __________________________________
Mail completed form to:TLC • 207 McPherson Street, Suite H • Santa Cruz • CA • 95060 or fax to 831-426-4383 Phone: 831-457-1004 • www.trich.org • [email protected]
Plan now to join over 400 adults & children, parents & treatment providers atTLC’s 2012 Annual Conference on Hair Pulling & Skin Picking Disorders
Build your own program of education and recovery from a comprehensive schedule of expert-led seminars covering topics from treatment and research to self-help and parenting. Join some of the world’s leading experts and most experienced clinicians, researchers, and other members of our community as they share ground-breaking news on the latest research, outline state-of-the-art treatment strategies, provide take-home resource materials, and cultivate support and recovery. Make support and networking contacts and learn real tools for recovery. Early registration discounts are offered until March 30: Don't delay!
Who Should Attend?People of all ages who live with pulling, picking and related behaviors, their families and loved ones, as well as clinicians looking to improve their strategies for treating these disorders. Special programs offered for younger children, teens, parents and adults with trichotillomania or com-pulsive skin picking.
Why Should You attend?• Over 50 workshops, symposiums and presentations covering topics from the latest treat-ment approaches to self-help strategies • Networking and support-building opportunities with others who suffer from these disorders• Accessibility to clinicians and researchers who KNOW trich and skin picking• Inspiration from stories of triumph and recovery and the knowledge that you are not alone!• Continuing Education offered for psychologists (see www.trich.org for details)
Stay at the Conference Hotel for only $124/night (plus taxes and fees)The Chicago Marriott O'Hare offers the affordable luxury that Marriott is known for, with the convenience of a near-airport hotel. With round-the-clock complimentary shuttle service to and from O'Hare International Airport, and El-train access on-site, the Marriott O'Hare is your homebase for seeing all the sites of Chicago. Take advantage of this incredibly low rate by reserving your room today: http://www.trich.org/involved/cal-conference.html for group code and reservation information.
Save $100/person on registration through March 30!Visit www.trich.org for registration, sponsorship and exhibitor opportunities
Limited partial
scholarships are available!
To apply, send an email to
[email protected] that includes:
* Why you'd like to attend
* Why you request financial assistance
* City and State from which you'll travel
Flexible payment plans
are also offered.
May 4-5, 2012 . Chicago Marriott O’Hare
Discover REAL tools for recovery from clinicians, researchers and other community members who KNOW these behaviors.
. Learn State-of-the-Art Treatment Strategies
. Share the Latest Research
. Develop Self-Help Tools
. Cultivate Support & Networking Contacts Offering programs for adults, kids, parents & treatment providers.
Register before March 30 and SAVE up to $100/person!
2012 National Conference on hair pulling & skin picking disorders
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PANDAS: Association with Trichotillomania?Continued from page 1
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and/or exacerbation. There is also evidence of a fluctuating course and a range of other symptoms (e.g., urinary urgency, impulsivity, separation anxiety).
PANDAS, however, has not been universally accepted as an official diagnosis nor is it clear which features will likely de-lineate this subtype. Although mounting evidence suggests an etiological role for immune dysfunction in a subset of indi-viduals with OCD and tics, widely accepted consensus-based criteria for the definition are currently lacking. There are several other deficits in the current knowledge regarding PAN-DAS. Although the initial definition of PANDAS requires a temporal associa-tion between the infection and the on-set of OCD or exacerbation of OCD, there has been little evidence support-ing such an association between GAB-HS infections and immune markers and clinical exacerbations of OCD or tic symptoms. In addition, the timing and the type of GABHS association to make a definitive argument for PAN-DAS has not been well defined. For ex-ample, symptom onset that occurs 1-6 months after GABHS infection could be chance association. Also, does a person need clinical GABHS or could subclinical or exposure from close con-tacts be enough to elicit the symptoms?
Further evidence suggests that psycho-social stress may act in concert with immune dysregulation to mediate the progression of these disorders.
Can we test for PANDAS?Another aspect of PANDAS that requires further research is how to test for an infectious etiology. To date, several antibod-ies have been examined: antistreptolysin O, anti-deoxyribonu-clease B, anti-A carbohydrate and anti-basal ganglia antibod-ies. Early studies found that an antibody rise can be detected approximately 2 weeks after an acute streptococcal infection and that the antibody response typically peaks 3-4 weeks af-ter infection. Elevations in these antibodies, however, are not diagnostic of PANDAS. They only provide evidence for an antecedent streptococcal infection. Other research suggested that PANDAS was associated with increased expression of the B-lymphocyte antigen D8/17, a possible genetically inherited trait marker for susceptibility. Results from D8/17 antigen research, however, have been mixed in subjects with OCD.
How is PANDAS treated?PANDAS research has also produced data supporting treat-ment approaches, and these treatments further complicate our understanding of the phenomenon. Some research has
demonstrated partial or complete remission of OCD symp-toms while taking antibiotics, or undergoing plasmapheresis or intravenous immunoglobulin. Successful plasma exchange or antibiotic therapy in childhood OCD cases provides sup-porting evidence of an antibody-mediated etiology of disease. Penicillin, at doses of 500mg twice per day, is considered to be the first-line treatment for PANDAS patients, although other antibiotics, including the use of a cephalosporin, have been reported as effective in quelling the obsessive and compulsive symptoms noted in PANDAS patients. The long-term effec-tiveness of these treatments, especially as the child ages, how-
ever, is unknown at this time. Although treatment for PANDAS appears prom-ising, a definitive conclusion on the efficacy of antibiotics for PANDAS cannot be made. The safety, efficacy, dosing and duration of antibiotic use for possible cases of PANDAS needs further study. Some researchers have raised concerns about treatment based on little evidence. They warn that PANDAS is frequently diagnosed by community physicians in patients who do not meet proposed criteria, there is an unwarranted use of antibiotics for prolonged periods of time and without any laboratory evidence of GABHS in-fection, plasmapheresis and immuno-globulin have potentially serious side effects, and many OCD patients are not receiving recommended conven-tional therapies.
PANDAS and the Family: What do we know?Recent literature has expanded our understanding of PAN-DAS. For example, there are some data to suggest that family members of PANDAS children have elevated rates of autoim-mune disease compared to the general population. In particu-lar, recent research suggests that there may be a link between maternal autoimmune disease and OCD/tics and PANDAS. The autoimmune hypothesis is based on the find that individ-uals with lupus are 10-15 times more likely to have OCD. In addition, OCD is more common in the relatives of those with rheumatic fever, another autoimmune illness. In particular, autoimmunity in the mother may be one additional risk fac-tor for the development of OCD/tics in young children. The influence of prenatal exposure to maternal immune activation upon brain development and behavior has yet to be explored.
PANDAS and Trichotillomania/Skin Picking?The bulk of the PANDAS research has focused on OCD, and there are only a few reports associating PANDAS with trichotillomania and no cases describing skin picking. In fact, the studies that examined PANDAS in OCD and tic disorders largely failed to account for any related symptoms of hair pull-
ing or skin picking. What we currently have are small pieces of a possibly larger picture. A report from France illustrates the case of a 13-year old girl who experienced sudden onset of hair pulling and OCD symptoms immediately following strep-tococcal infection. The OCD symptoms began approximately 7 days after the start of the pharyngeal infection (symptoms included compulsive counting and ordering and obsessions with symmetry). Concurrent with these symptoms, the patient began to pull out her hair resulting in noticeable hair loss. She was treated with amoxicillin/ clavulanic acid (1000mg) over a course of 15 days, at which time a course of cognitive-behav-ioral therapy and sertraline (50mg) were also initiated. Her trichotillomania and OCD symptoms remitted within weeks of beginning this course of treatment. Another report of two cases of early-onset hair pulling described individuals who re-peatedly developed symptoms after streptococcal infections, with the symptoms remitting after the infection was treated. A fourth case found that hair pulling onset was associated with the onset of Sydenham’s chorea, an autoimmune disorder. In that case, penicillin treatment resulted in a remission of both chorea symptoms and hair pulling.
Although suggestive of a PANDAS association with tricho-tillomania, no testing for antibodies was performed in these cases, and given the questions regarding testing, it is still un-clear what sort of testing and when is most appropriate. One study that attempted to find a biomarker for the association of GABHS and trichotillomania analyzed B-lymphocyte antigen D8/17 expression (a biomarker that suggests autoimmune eti-ology but has been called into question) in 17 individuals with trichotillomania. The study, however, found no differences in levels of the antigen compared to controls.
For ParentsGiven the difficulty in obtaining an accurate diagnosis of PAN-DAS, and because of the development of antibiotic resistance in the community at large, the use of antibiotics for children with possible PANDAS-related disorders is still controversial and needs to be considered cautiously. As such, a family physician should be consulted if parents have concerns about possible strep infection in their children. The sudden onset of motor tics, repetitive motions or behavior, or dramatic mood fluctua-tions which co-occur with or immediately follow such infec-tion should be reported to your doctor for further evaluation.
SummaryIn summary, PANDAS provides an exciting and complicated avenue by which we may better understand the etiology of a range of compulsive behaviors that begin in childhood. To date, however, the concept of PANDAS for OCD is far from settled and the association of PANDAS with trichotilloma-nia or skin picking has received too little research attention to make any conclusions. The limited, but intriguing, data in trichotillomania suggest that hair pulling and skin picking should be assessed in studies examining the PANDAS phe-nomenon, and that the inclusion of trichotillomania and skin picking disorder may help further refine our understanding of
PANDAS.
Further reading:Kim SW, Grant JE, Kim SI, Swanson TA, Bernstein GA, Jaszcz WB, Williams KA, Schlievert PM. A possible associa-tion of recurrent streptococcal infections and acute onset of obsessive-compulsive disorder. J Neuropsychiatry Clin Neu-rosci 2004;16(3):252-60.
Kochman F, Hantouche EG, Karila L, Bayart D, Bailly D. Obsessive-compulsive disorder in children induced by strep-tococcal infection. Presse Med. 2001 Nov 24;30(35):1747-51.
Leonard HL, Swedo SE. Paediatric autoimmune neuropsy-chiatric disorders associated with streptococcal infection (PANDAS). Int J Neuropsychopharmacol 2001;4(2):191-8.
Mell LK, Davis RL, Owens D. Association between strepto-coccal infection and obsessive-compulsive disorder, Tourette's syndrome, and tic disorder. Pediatrics 2005;116(1):56-60.
Murphy ML, Pichichero ME. Prospective identification and treatment of children with pediatric autoimmune neuropsy-chiatric disorder associated with group A streptococcal infec-tion (PANDAS). Arch Pediatr Adolesc Med 2002;156(4):356-61.
Murphy TK, Goodman WK, Ayoub EM, Voeller KK. On defining Sydenham's chorea: Where do we draw the line? Murphy TK, Goodman WK, Ayoub EM, Voeller KK. Biol Psychiatry 2000;47(10):851-7.
Murphy TK, Snider LA, Mutch PJ, Harden E, Zaytoun A, Edge PJ, Storch EA, Yang MC, Mann G, Goodman WK, Swedo SE. Relationship of movements and behaviors to Group A Streptococcus infections in elementary school chil-dren. Biol Psychiatry 2007;61(3):279-84.
Snider LA, Swedo SE. PANDAS: Current status and direc-tions for research. Mol Psychiatry 2004;9(10):900-7. Swedo SE, Leonard HL, Garvey M, Mittleman B, Allen AJ, Perlmutter S, Lougee L, Dow S, Zamkoff J, Dubbert BK. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first 50 cases. Am J Psychiatry 1998;155(2):264-71.
Swedo SE, Garvey M, Snider L, Hamilton C, Leonard HL. The PANDAS subgroup: recognition and treatment. CNS Spectr 2001;6(5):419-22, 425-6. §
PANDAS: Association with Trichotillomania?Continued from page 10
Although treatment for
PANDAS appears
promising, a definitive
conclusion on the
efficacy of antibiotics for
PANDAS cannot
be made.
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Personal User’s GuideContinued from page 12
Personal User’s GuideContinued from page 1
Identify: What is a thought that often comes up about your picking or pulling? How much do you believe it?
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Is this thought true? ___________________________________
Is it helpful? _________________________________________
Is there another way of thinking about it that would be more
helpful?_____________________________________________
Edited thought: What is my new self-care script about picking or pulling that is more positive, realistic, or takes a problem-solving approach?
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The script that we rehearse is the life that we choose to live. In addition to identifying, challenging and replacing toxic thoughts, it is also good to practice mindfulness. Mindfulness involves awareness of ourselves and how our mind functions. It is turning off autopilot. There is quite a bit of information out there on the benefits of mindfulness training. I would encour-age you to practice a mindfulness activity daily. One thing at a time, being aware of ourselves and our activity in that mo-ment. This also helps to improve awareness of BFRBs and can be a good substitute if your picking or pulling puts you into a “trance-like” state.
My Emotional TriggersEmotional triggers are very common in picking and pulling behavior. It is good to understand what emotions your BFRBs are trying to regulate. Do you pull when you are bored? Tired? Frustrated? Unsure? Angry? Excited? Intolerant of less than per-fect skin or hair?
Most common emotional triggers: _______________________
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What sparks my emotions? _____________________________
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What do I do to cope with emotions? ___________________
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What can I do to cope with emotions? ___________________
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Once you are aware of your emotional triggers, you can start to learn and practice some adaptive emotional coping skills. For example, if you notice strong picking or pulling urges when you are frustrated, it may be helpful to learn a relaxation ex-ercise such as controlled breathing or progressive muscle re-laxation. Most cognitive behavioral therapists can help you identify which skills would be best for you to regulate trigger emotions.
Other TriggersThis article has already discussed some of the cognitive (thought-related) and emotional triggers of BFRBs, but it is im-portant to look at other factors that may also influence your behavior. It is common for people to have certain locations that become conditioned as situational triggers (i.e., pulling in the car, picking when washing your face before bed, etc.). Sensory triggers are the fascinating experiences that people have when they pick or pull. It can be a tingly scalp, the coarse feeling of a hair, a bump on the skin, or the pop of a blemish. There can be much satisfaction in these sensory cues, so it is important to understand if they are a factor for you, and what substitutes can be used to satisfy these sensory experiences.
Situational triggers: ___________________________________
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Sensory triggers: _____________________________________
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Other triggers: _______________________________________
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My StrategiesIn this section, take a few minutes to focus on one or two strat-egies/goals in each area. If it is overwhelming, break it down and focus on one area at a time. Once that becomes more of a habit add another to your daily routine. Remember to be flex-ible; there are often twists and turns in any journey.
There are a number of strategies that can be used; it may be helpful to review some of the resources on the “Articles, Treat-ment Guides, and Brochures” tab on the TLC website for some additional inspiration.
My Body: Diet, Exercise, SleepMeeting physical needs to promote overall well-beingExample: Decrease soda consumption to 2 cans per week
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My Life: Trying to have a better match between the “ideal” and the “real”Example: Check work email no more than 2x per week at home
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My Spirit: Take steps to connect to something outside of ourselvesExample: Practice walking meditation twice per week
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My Mind: Edit your internal scriptExample: Challenge permission-giving thoughts like, “I will start tomorrow” with “Trich is getting restless, now is the time to use a strategy before I even start pulling”
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My Emotions: Finding a different way to cope with emotionsExample: Practice breathing exercise when mind is racing before bed
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My Other Triggers: Sensory, Situational, HabitsExample: Meet sensory needs by using fiddle toy while on
computer __________________________________________
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Example: Modify situational trigger by practicing quick in and out of bathroom without lingering
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Example: Make picking or pulling more difficult by wearing a
rubber fingertip _____________________________________
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As you practice these new patterns you will find that they will become stronger and the BFRBs will decrease in the frequency and intensity of urges. It is important to remember that it is still a part of you, but it can go into “hibernation." Monitor how you are doing and evaluate which strategies work best for you in getting and keeping your picking or pulling under control by giving your body and mind what it needs in other ways.
My StoryThis is the direction I have decided to take in my journey:
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Many good wishes on your path.
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touchin touchin
Dear Friends,
Happy New Year! And… Happy Valentine’s Day! It is amazing how quickly the transition occurs from hectic (and hopefully joyful) holi-days to the new year with its new beginnings, resolutions, and new “to dos." By the time you read this, 2012 will be well underway.
How is it going?
I appreciate the little burst of energy that a new year brings –the feeling of a clean slate and starting anew. But it can quickly bring despair if we set goals or resolutions and soon fail. I joined a gym two months ago and have only managed to get there once. I resolved to leave the house early enough to walk my older daughter to preschool instead of driving. First day back to school found me strapping Audrey into her carseat again.
And one of my most vivid memories of being a child with trichotillomania is staring at my digital clock a few minutes af-ter midnight, feeling the stub of my last eyelash in my fingers, and realizing I had already failed in my resolution to stop pull-ing my eyelashes.
These failures are normal and speak to the problem of setting a destination without a detailed map of how to get there. Drive and perseverance are important to success, but it is not enough to just want something badly. I think it is a mixture of the “how” – the tools that work for you – and resolve - the booster shots of motivation and social support for your goals.
More and more, research is showing that it is possible to change behaviors – but also that it is hard work. Recent research into dieting is a good example – losing weight is hard, but keeping weight off is harder. Apparently, our body conspires against us by making us feel hungrier, and slowing our metabolism after we lose significant weight. Those who succeed in keeping the pounds off have found a way to be vigilant about using the tools that help them – regular weigh-ins, strict calorie limits, daily exercise with a friend… whatever works, every day. To be honest, I got a bit tired and depressed just reading about it. And I have often felt that way about the work it takes to control pulling.
One of the truest moments in Bad Hair Life (my documentary about trich) is when Christina says, “I don’t know where we get the idea that life is going to be easy. Life is difficult, a lot of the time.”
But I have recovered from hair pulling. Though I pull occa-sionally, it hasn’t caused me great distress or visible damage for many years now. The tools were important – the weekly check-ins and self-monitoring, the bandaids and fiddle toys, the self-awareness or “mindfulness” I developed about my be-havior. But equally so were the motivation and social support that have enabled me to keep using those tools: the support group members cheering me on each week, the TLC work-shops, Conferences and Retreats peppered throughout the year, the pleasure I took in seeing results – eyelashes, eyebrows –in the mirror.
If the energy of the New Year is already lagging for you, I high-ly recommend attending the TLC Conference this May. The many lectures and workshops are designed to arm you with the Tools, but just as importantly, the overall experience is an amazing dose of inspiration, support, and motivation. For me, the social support I get at the Conference puts the pleasure into the hard work needed to remain in recovery. And that is what makes it do-able.
If the Conference isn’t feasible this year, I do suggest finding other ways to achieve a motivation boost – if you are like me, we simply need them throughout the year. A new basket of fiddle toys. A visit to your local support group. Buddying up with a friend from an online group to check-in weekly or daily…
Meanwhile, if I am going to walk my daughter to preschool, I need a plan of action. Is it worth it to set the alarm clock 20 minutes earlier? Should we forego some of the playtime in her room after waking? Could I make her lunch the night before? (I can’t even tackle the gym plan right now. What was I thinking?).
Much love to you,Jennifer
Executive Director's Report...Jennifer RaikesLos Angeles, [email protected]
Dear ones,
Welcome to 2012! This year is a “focus” year for me, on both a personal and professional lev-el. Let me explain. At the grand and marvelous age of 55, I have come to understand fairly well what works for me, and what doesn’t (took long enough!)
For example…
Personally, what DOES work: Eating healthy food. Regular ex-ercise. Enough sleep. Committed prayer/meditation time. Reg-ular self-review of my internal state. Being honest. Having a loving home environment. Having deep authentic connections with other beings.
What DOES NOT work: Thinking I can “pay less attention now” that I have a pretty solid period of hair pulling and skin picking recovery (14 years or so). Going for days without real physical exercise. Eating/drinking anything in excess. Not sleeping. Hav-ing unresolved interpersonal conflict. Being dishonest. Saying yes when I should say no.
Professionally, what DOES work: Engaging in work that I feel is of value. Better management of task completion. Working fairly autonomously within a goal-oriented team. Working with people I respect and love to reduce suffering. Pushing the en-velope as opposed to daily maintenance (that’s the trailblazer in me…). Better understanding of the needs I am serving with my work.
What DOES NOT work: Spending too much time record-keep-ing (bane of my existence!). Being micro-managed (don’t worry, I am not!). Feeling hurt that folks are afraid - unwilling - to step up to the plate and change our world for the better (sometimes I DO feel bereft, knowing how many of us there are, yet how few actually get involved in supporting the goal of a cure.) And this actually brings me back to my theme of membership in the last issue! What else needs to be done, and how can we do it bet-ter? How do we access the resources to meet THIS/OUR com-munity’s needs?
In the last issue, I talked about TLC membership, and the orga-nization’s need to deeply understand what motivates you (our beloved TLC membership) to participate, and stay involved. I
asked 4 questions, posting my email. I have to say that I received incredibly thoughtful emails from people about their member-ship motivations, and I am so very grateful for the responses.
Now I have a final question for you to answer:
Please list three things that you would like to see TLC offer that you feel would support real recovery in your life or your loved one’s life.
I am not saying we can do it, but we really need to know your thoughts, so we can try.
My email is [email protected], and it would really mean the world to me If you would take a few minutes to email me your thoughts on this.
Love All Ways, Christina
Founding Director's Report...(Musings from Christina)Christina PearsonSanta Cruz, CA
Now I have a final question
for you to answer:
What three things you would
like to see TLC offer that
would support real
recovery in your life or
your loved one’s life.
Email your response to
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I would like to make my donation on the _____ day of each month, beginning in February 2012.
I would like to make a one-time gift of $ ___________ to support TLC’s mission and work.
Please initial:
___ I understand that I can change or cancel my pledge at any time by contacting TLC.
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Card number:_____________________________________________________________________________________________
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Mail completed form to:TLC • 207 McPherson Street, Suite H • Santa Cruz, CA 95060 or fax to 831-426-4383
831-457-1004 • www.trich.org • [email protected]
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Please select all that apply:
adult TTM adult skin picking child TTM child skin picking educator health professional other
Name (and title if applicable):___________________________________________________________________________
If parent, child’s name and age: __________________________________________________________________________
Phone: ___________________________________________Email: ____________________________________________
Street:_____________________________________________________________________________________________
City:___________________________________________________________________State:___________Zip:___________
