Trich Misconceptions

I’m still wondering at the wisdom of posting my last post about Annabelle’s trich.  The last thing I want is for anyone to pity her or see this as freakish behavior (though, I admit that seeing a bald spot on my own child’s head, caused by her own hand, is horrifying).

I’ve researched trich quite a bit over the last few years, and while I don’t hold myself out to be an expert, I have learned some things:

First and foremost – and this responds to probably the most prevalent misconception about trich – it is NOT an OCD behavior.  OCD is characterized by repetitive, ritualistic behavior (for example, washing one’s hands over and over, or feeling compelled to turn a light switch on and off a certain number of times), the driving force being a belief that if such behavior isn’t followed, something bad will happen, or the general order of things will be upset.  Trichotillomania is classified, rather, as an impulse (as opposed to compulsive) control disorder – in other words, an inability to control one’s impulse to do certain things, in this case, twirl or pull one’s hair.  It is considered to be the same type of “habit” as nail-biting and skin picking (know anyone who habitually picks at their cuticles?  I bet you do.).  The sad and frustrating thing about trich, and what makes it stand apart from nail-biting, is that it impacts a person’s physical appearance so much more drastically, and therefore it has a much stronger social stigma attached to it.  If you see someone biting their nails, even down to the bloody quick, you hardly give it a second thought, because so many people do it.  If you see someone pulling their hair out, on the other hand, well, that just sort of screams “crazy,” doesn’t it?  But in reality, the two behaviors are extremely similar.

As for Annabelle – and I suspect for many people with trich who began the behavior very, very young – I believe it started out as a sensory thing.  I think as a baby, she just liked the feel of hair between her fingers (much like some babies like rubbing tags or the silk edge of a blanket between their fingers).  I think over time, it became a self-soothing behavior – very much linked, in her case, to her finger-sucking, which she also continues to do to this day – and gradually the rubbing/twirling just grew more vigorous until she was breaking the hair off, and over more time, yes, it became a response to boredom and stress.  To this day, she only does it when she’s idle – sitting in the car, for instance, or watching TV, and in bed as she falls asleep at night.  It tends to go in cycles with her – she’ll go for months when it will seem very much under control, and her hair will grow out beautifully, and then for whatever reason, she’ll go on a pulling cycle that might last weeks or months.  Right now it’s the worst it’s ever been – I say that because never before now has she ever actually pulled hair out at the root, creating bald patches – and I’m sure it’s tied to the upheaval of having a new baby and the boredom and lack of structure that comes with summer break.

As far as behavioral therapy, yes, it’s something to consider.  But the truth is that our insurance won’t pay for it, it’s very difficult to find a therapist with specific knowledge about trich, and I’m not sure it would help anyway.  I have a friend whose daughter also has trich, and they took her to THE expert/renowned trich therapist (in a different state), and the tools she offered, from my understanding, weren’t all that different from what we already offer at home which I’ve learned about just through my own research.

It is very difficult, without a doubt.

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9 Comments on “Trich Misconceptions”

  1. Alyson
    July 13, 2012 at 8:44 pm #

    That makes sense Lisa that it’s a impulsive rather than compulsive disorder. Does she have other sensory issues? My older son J had major sensory issues when he was younger and thankfully we ended up having the OT who was a sensory guru who helped not only J but us learn how to help him. He can cope very well now but guess what,he bites his nails right down for several years now so what you just explained makes total sense to me. My Aunt works for MacLean hospital as a program director and she is a big proponet for behavioral therapy for kids(she views meds as a last resort for children)so that’s always my first suggestion

    • Alyson
      July 13, 2012 at 8:50 pm #

      Posted too soon…
      So anyway, thanks for explaining it better. I just feel terrible, not in a pity way, but in a Mom way. I hope that somehow Annabelle will be able to overcome it.
      Oh and insurance can really suck ass when it comes to things like this. It’s not fair. I wish the health care insurance business would realize it’s a lot cheaper in the long run to provide different therapies for children while they are young

  2. Keeping Up With The Holsbys
    July 13, 2012 at 8:57 pm #

    I likened it to nail biting myself. Before you know it you’ve chewed your whole hand to the quick and you didn’t even realize your hand was in your mouth!
    Habits can be broken…. I have lovely nails these days!

  3. Megan
    July 13, 2012 at 9:25 pm #

    Hi! I think it is me you’re talking about. 🙂

    I’d say that Ruth talked us through some things (completely ignoring the unwanted behavior, excessively rewarding the desired behavior – the keeping in place of the bandaids and gloves, and the sensory replacements) in a way that was very helpful for us and aided our success. I feel we gained a lot more tools by having one on one interaction with her. I also think it was extremely valuable to eliminate the thimbsucking at the same time.

    Audrey still wears her gloves at night. We recently had to go back to tying them as we saw a resurgence of the thumb and pulling. I think we felt confident in addressing the resurgence quickly because of our work with Ruth.

    Our insurance did not cover meeting with her. We met with her three times and the oop expenses was maybe $300. Plus she was available to us by phone and email and we did utilize that (and still would) if something popped up. Much less than our homebirth and counseling. 🙂

  4. Amy
    July 15, 2012 at 2:56 pm #

    I wonder if this would be in the same category as thumb sucking? Thanks for sharing, while I do not know of anyone who pulls hair, it’s obviously very common. By sharing your story you are shedding light on the subject and others in the same situation will not feel alone. Plus you may get some good tips. Quite frankly, most of us have some sort of soothing technique, my kids do too, myself included.. My 7 yr old cracks her knuckles constantly and my 4 yr old used to suck on his blanket until it got lost. Some of this we grow out of naturally on our own, some stop due to social pressure, but either way it takes time. I don’t think she is a “freak”, she’s just a little girl who will one day work through it when she is ready. Be strong Lisa, I know it’s hard but you can do it, you have to. 🙂

  5. Stacey
    July 17, 2012 at 3:02 am #

    I wonder if some kind of barrier might help her “break the habit,” lIke if she just couldn’t do it, would she stop? My little girl for a while was twisting her hair during the night into little rat nests, which of course she would scream when I tried to comb them out. We, or rather, Santa gave her a night cap. We put it on her at night before bed as part of her bedtime routine, and it really helped. We were just very matter of fact about it, here’s your night cap, and if we happened to see it off her head at night, we’d just put it back on. After a couple of months, she asked to sleep without it, and she no longer twisted her hair like that and it’s been close to a year now. I’m not sure if this would help Annabelle, as Tiven only did her twisting at night, but it’s an idea for you!

    • Lisa
      July 17, 2012 at 3:50 am #

      Stacey, we’ve tried that. Not a cap, per se, but tape on her fingers, gloves, socks on her hands – in other words, barriers. But she’s wiley – and going on 8 years old. If she doesn’t want something on her hands (or her head), she takes it off. We are putting tape on her pulling fingers now, but only because she’s currently willing to go along with it. That could change on a moment’s notice.

  6. Rebekka K. Steg
    July 28, 2012 at 7:10 pm #

    I struggle with compulsive behaviour myself, in my case picking my skin: I’ve had eczema since I was one, and for as long as I can remember, as soon as I’m bored or distracted I’ll start picking – especially during stressful periods.

  7. jen
    November 4, 2012 at 9:22 pm #

    For what it’s worth, trich is getting reclassified in the DSM-5 (to be released within a year) as an obsessive-compulsive spectrum disorder. They’ve found it has more in common with anxiety and OCD type issues than it does with gambling and such (impulse control issues).

    The good news is that the reclassification is apt to stir up some interest in it, so there will be more research and hopefully more answers to come.

    I’m sorry your little one is dealing with this.

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