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Resources

For people with Down syndrome, family members, caregivers and professionals.

Trichotillomania

January 2013 | Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Trichotillomania is “hair loss from repeated urges to pull or twist the hair until it breaks off. Patients are unable to stop this behavior, even as their hair becomes thinner” (see this link).

The cause of trichotillomania is not known. It is categorized as a form of impulse control disorder. Previously it was thought to be related to obsessive compulsive disorder but is no longer put in that category. It is not thought to be caused by anxiety or depression but can be associated with anxiety or depression in some individuals.

We have only seen a few patients with Down syndrome with trichotillomania. We have seen more patients with an associated condition – chronic skin-picking.

We were able to find only limited information about trichotillomania in people with Down syndrome and it was primarily anecdotal reports. The bulk of the information available is about trichotillomania in people without DS.

Assess for underlying physical condition

Are there other reasons people might pull at their hair or pick at their skin? One thing to consider first is if there is an underlying physical condition that is contributing to a need to touch, scratch, or pull on the skin or hair. The following conditions may be associated with skin irritation that can contribute to a need to touch, scratch, or pull on the skin or hair:

  • Atopic dermatitis (eczema)

  • Scabies

  • Psoriasis

  • Hyperthyroidism (overactive thyroid)

  • Cholestasis (bile backs up due to obstruction of the biliary system)

People obviously lose hair for reasons that are not related to pulling on the hair. Consider other possible causes of hair loss:

  • Alopecia areata (an autoimmune disorder resulting in patches of or total hair loss – this is more common in people with DS)

  • Tinea capitis (a fungal infection of the scalp resulting in hair loss)

How is it treated? 

Treatment may include forms of behavioral therapy and medications.

  1. Cognitive Behavioral Therapy may include: Habit Reversal Training, Comprehensive Behavioral Treatment, acceptance and commitment therapy, and dialectic behavioral therapy.

    1. A good resource about these approaches is the Expert Consensus Treatment Guidelines on Body-Focused Repetitive Behaviors: Hair Pulling, Skin Picking, and Related Disorders (https://www.bfrb.org/storage/documents/Expert_Consensus_Treatment_Guidelines_2016w.pdf).

    2. Some of the specifics of therapy may be more involved than some people with Down syndrome are capable of participating in. Our book Mental Wellness in Adults with Down Syndrome describes use of cognitive therapy for people with DS (https://www.woodbinehouse.com/product/mental-wellness-in-adults-with-down-syndrome-a-guide-to-emotional-and-behavioral-strengths-and-challenges/).

    3. A few simple techniques can include:

      1. Helping the person be aware of the behavior. Some families use a “secret sign” to help the person realize he is doing the behavior. This makes him aware but avoids embarrassing him in front of others with an overt reminder.

      2. Redirecting to a different behavior.

      3. Using a “worry stone” to hold and keep his hands busy to avoid pulling or picking.

  2. Medications

    1. No medication is approved by the FDA for trichotillomania or skin-picking. However, some have benefitted by using selective serotonin reuptake inhibitors (e.g. sertraline/Zoloft, fluoxetine/Prozac, paroxetine/Paxil, etc.).

    2. Another medication used with some success is naltrexone/Revia. It is a medication used for alcohol and drug dependence. It reduces the urge to participate in pleasurable behaviors and may reduce the pleasure some individuals experience in hair-pulling or skin-picking.

    3. Additional information on medications can be found at: https://www.bfrb.org/component/content/article/3-treatment/186-medications-for-body-focused-repetitive-behaviors.

An additional potential treatment is the amino acid, N-acetylcysteine, a glutamate modulator: https://www.ncbi.nlm.nih.gov/pubmed/19581567.

 

Here are some additional sources of information:

We recommend consulting your healthcare provider regarding diagnosis and treatment.

Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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