Wednesday, April 1, 2009

Not Alopecia - Trichotillomania!

[UPDATE: Barbara set me straight on the terminology. It's not alopecia -- it's trichotillomania. Two bonus syllables, even!]

Joy's cute new haircut did not stop the hair-pulling.

She's yanking it in clumps now. It's her new favorite stimmy.

Here's how it looks from the top:

Alopecia

Any blogospheric wisdom would be appreciated. Stocking cap? Buzz cut? Bald is beautiful?

17 comments:

Fielding j hurst said...

Wow, that's a tough one. Have you tried rewarding her when she isn't pulling? I'd say buzz cut if that's where it's going anyway. This makes me appreciate the fingernail chewing that goes on here as atom d'jour.

I remember putting baby oil in my hair as a kid. I bet you could pull oiled up hair out.

Fjh said...

Stim d'jour that is

kia (good enough mama) said...

Aw. :( I have no advice. I can just try to sympathize. I hope someone out here in the blogosphere can offer some good suggestions...

Bethany said...

I am not a parent, but a special education teacher (I have the easy job). One of my kids would seek out a classmate who was magnetically drawn to pulling her long hair, most likely because she enjoyed the sensory input (she is non-verbal so I can not say for certain). I provided her with multiple methods of accessing and requesting hair brushes for a deep-pressure brushing of her hair (there are also vibrating brushes for individuals who like that sensory input) and eventually she stopped seeking to have her classmate pull her hair and instead would request more appropriate sensory input by picking up one of her hair brushes (she was not yet proficient with picture symbols). I also provided this input throughout the day as one of her activities she could choose to engage in, and that helped reduce her sensory-seeking as well (rather than waiting for her to initiate and request, I presented the option to her - i.e. brush or playdough). I hope this helps!

therextras said...

This is a tough one, and understandably disconcerting.

I think the term you should explore is at this site:
http://kidshealth.org/teen/your_mind/mental_health/trichotillomania.html.

I've only read a bit on this in the past and that was in regard to a teen.

Do whatever makes you and JD feel most comfortable in terms of looks. (She will be beautiful whatever.)

I'm skeptical of an effective behavioral approach. And encourage you to seek medical advice, on the neuro order.

BRatK/Barbara

Quirky Mom said...

I have no wisdom.

But I thought you might enjoy knowing that Apple currently has two bald spots as a result of the "fairy dust" she put on her head in February. The "fairy dust" was actually a crapload of corn starch that, when it got wet and redried a few times (in repeated attempts to get it out) formed something akin to wax. It pulled the hair right out at the root.

Can you redirect her hair-pulling to something that isn't her own head? Give her something hairy to pull at?

Bethany's idea sounds promising as well.

JoyMama said...

Trichotillomania! *That's* the word I was looking for. Barbara, you've out-worded the librarian. Congratulations!!

FJH - welcome and thanks for the comment. I was a nail-chewer myself as a lass. We'll probably hit that sooner or later with Joy too... meanwhile, the baby oil thing did occur to me, believe it or not. Though I rapidly dismissed it, with visions of mineral-oil fingerprints on every surface of the house. Still. Maybe hairspray would do something?

Bethany - welcome and thanks as well! Hairbrushing is a good thought, even without the specialized tools. You zeroed in nicely on the sensory-seeking angle -- Joy is about as sensory-seeking as they come, and the hairpulling is a double-delight, between the feel of the pull and the stimmy delightfulness of the hair in the fingers.

QuirkyMom - at least we're not along in our balditude! She does have other favorite hairy stimmies: My Little Pony manes, an American Girl knotted doll-comforter with little tufts of yarn. Unfortunately, she could spend ALL DAY totally wrapped up in such stimming, so we've been trying to use them judiciously. Also, she's been up since 3 in the tented-crib, probably pulling herself balder by the minute.... yikes.

Lynda said...

I was thinking we could try a hat with an elastic band for day time. Like a cute sun hat. That wouldn't help when she's in her crib, but maybe it would help her redirect her hair pulling energies to something else sooner than she would if she could pull at it all day.

From my experience with the other kiddo I had that pulled hair, she eventually had to stop because after a while there was nothing left to pull. She only pulled at one particular spot on top of her head.
At least hair is something that will grow back, so Joy isn't doing any permanent damage.
I know, I know, real comforting...

JoyMama said...

Lynda -- I've got her in a cute pink hoodie right now. If that doesn't work, we'll try last year's Easter hat.

Blogging is such an awesome way to gather ideas!!!

rainbowmummy said...

I am a hair twister/puller too but NOTHING like this, man this is a toughy.

Ok how about something that is exactly like what she is doing, only not to her own head, like a cheap "barbie doll"? Either that or get her some dreads, lol, ohh or a wig!!

Mama Mara said...

There are tons of books -- yes, entire books -- devoted to this issue. I haven't read any (touch wood, my boys haven't dealt with this *yet*), but you might want to check out two from the library -- Hope for Hair Pullers by Nancy Keuthen, and The Hair-Pulling Problem by Fred Penzel -- that you can read in all your spare time.

pixiemama said...

I have no advice, but I just wanted to tell you that I love the grace you offer. No wailing and gnashing of teeth (which is probably what I would be doing!) just calming asking for help and contemplating the buzz cut.

Beautiful Joy.

I shaved my head in college. I loved it. If you're on facebook, friend me and you'll see a photo an old acquaintance posted.

jess said...

leave it to mara to find the books .. i have nothing that hasn't already been suggested. kendall went through a phase of picking at the skin on her lips until it would bleed. we basically went an aba route with it, setting up a program where she was rewarded when she wasn't doing it. the self stims are so difficult to handle, but i know you'll get through it!!

Trying To Deal said...

Wow, that is a tough one! My little guy went through a phase of pulling his hair out when he was 2, but I believe it was self injurious and not sensory. However, he does have an affection for hair, specifically my hair. He wraps his hands in my hair and will often gnaw on a big mouthful when receiving a big squeeze from mommy. His psychologist suggested that I buy a hair piece for him play with during appropriate times. I wasn't too keen on the idea, but there it is...

Good luck!

rhemashope said...

ditto to what pixie said...

the 1st part, not the 2nd part (i've never shaved my head).

Elizabeth Channel said...

A dear friend of mine's daughter had this but it was confined to her eyelashes. She did pull them all out but she wasn't on the spectrum so about a year of therapy later, she's finally considerably better. Still, it's a battle.

I am sorry you are dealing with this...

Anonymous said...

For some people there are other ways of "stimming" that can produce the same satisfied feeling without the destructiveness of the hair pulling. For me, chewing is a huge help to control my pulling. You could try getting her a chewable necklace (like the ones at stimtastic.co) and remind her to chew instead of pull. It is possible that by buzzing her hair she will redirect her impulse to pull, and that could possible result in another destructive behaviour.