Trichotillomania: Where do we start?

Trichotillomania: Where do we start?

Trichotillomania (trich for short), is an impulse control disorder, or ICD. This is the $3.oo word for our household this week.

So what is trichotillomania and why am I blogging about it?

Trichotillomania is a mental disorder that involves the irresistable urge to pull out hair. I am blogging about it, because my oldest has it.

Because of her urge to pull out her hair, usually without any conscious thought behind it, she no longer has eyebrows, or eyelashes.

The first time we noticed this was just before she started 2nd grade. The first time we had a name for it was when the eye doctor gave it a name during a routine vision/eye exam later that same year.

Now, however, she has run out of eyelashes and eyebrows to pull and has moved on to pulling out clumps of hair from her head. Finally, at age 11 1/2 years old, she has decided she wants to get help to stop, or at least curb this behavior before she has really significant hair loss.

Here’s the hiccup – where do we start? How do we get help? Where do we go?

I started at the Trichotillomania Learning Center (TLC). They have a bunch of great information. I downloaded and printed some of it.

I perused their listing of professional counselors that specialize in the treatment of trichotillomania. I found ONE in the vacinity, and she’s over 20 miles away (AND doesn’t take our insurance. Crap). The next closest ones are in downtown Chicago, over 60 miles away. Oh goody.

I emailed her homeroom teacher asking if there was someone in the school district that could help. The teacher was great and forwarded the email to the school social worker. The social worker basically said there is a peer group that she can join (not necessarily a group of kids with the same disorder), but that they don’t do counseling. Awesome.

My hubby even talked to the social worker at his police department. That person said get a referral from the pediatrician for a counselor. Excellent.

So, from what I can see, there is no one to guide us – we are on our own.

Love it.

I haven’t been blogging lately, because I’ve been doing research trying to figure out how to move forward.

This is what I’ve learned:

  • There is no definitive cause of trichotillomania
  • There is no definitive way to diagnose trichotillomania until there is significant hairloss
  • There are hugely varying theories on how to treat trichotillomania
  • Trichotillomania is not an obsessive compulsive disorder (OCD), but rather, an impulse control disorder (ICD)
  • Children have a better success rate of stopping this behavior than adults
  • There are a very limited number of counselors that have experience dealing with trichotillomania patients
  • Medication is rarely a helpful solution
  • Behavioral therapy seems to work the best

After talking to my oldest about this today, she agreed to let me blog about our journey through this problem. She’s a wonderful, beautiful brave girl that is ready to make a change in her life.

Stayed tuned. I know there is more to come.

James 1:2-3 (NIV)

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance.

Romans 8:28 (NIV)

28 And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

Do you or does someone you know suffer from trichotillomania? Join the conversation here, or join us on Facebook at my official fanpage by clicking here.

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Filed under: Trichotillomania

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