Ah.  Where do I begin this?  I guess just blurting this out is the best way to get the info out.

Josephine has been diagnosed with Trichotillomania.  Yup.  Trichotillomania – a genetically linked chronic hair pulling disorder.  Want to know more?  Check out www.trich.org.  It is the best web site available and will give the most detailed information.

How do I feel about this?  What does this mean for Josephine, for us as parents, for us as a family?

I am happy to finally have an answer for WHY Josephine was pulling out her hair.  It’s nothing we could have known about and nothing we could have done to stop her.  From the studies I’ve read (call me the Trich expert of West Orange, NJ!), there is a genetic link, so she was pre-disposed to this disorder, just like her Tet 8p.  Josephine just needed some event or emotion to trigger the pulling.  Her trigger is her frustration and anger.

When I look back, I recognize she has been pulling her hair for at least 6 months.  But it wasn’t until we were in Ohio in August that it all came to a head and she pulled out 5 clumps of hair in one day.

And when I go back even further, I realize Josephine has been obsessed with hair for at least 1 year.  It was a motivator during therapy and a comfort when she was in pain or just needed something to hold.

Now it’s an every day or every other day occurrence and something I have to watch closely.  Josephine pulls when she’s tired and won’t sleep.  Josephine pulls when I leave the room for a very short period of time.  Josephine pulls when she is casually playing on the floor and in a good mood.  It just happens.

I don’t know what to feel or more importantly, I don’t know HOW to explain how I feel.

It sucks.  Flat out.  I feel helpless.  I want to cry.  I want to scream.  But I keep that inside because I want what’s best for my little girl and I redirect that pain and frustration and anger into finding how to help her.

I sit here typing this and feel the emotions stirring up inside and can’t get them out.

We are scheduled to see a therapist who specializes in children with Trich, but that’s not for a couple of weeks.  What are we supposed to do until then?

We try to re-direct her hands when she starts to pull and rub her head to give her the sensation she is seeking by pulling.  But we can’t always catch her.

The other fear that overcomes me is Josephine is EATING her hair, as well as hair of others, including the dog.  This is called trichophagia.

I am nervous about leaving Josephine alone for a split second because it could lead to her finding a piece of hair on the floor, in her crib, on the rug and putting it in her mouth.  By doing this, Josephine could develop a hair ball in her stomach, which could cause additional issues.

We are waiting for results from an X-ray to see if the hair ball is present.  If so, it needs to be removed with scoping or surgery.  But I won’t think about that yet.

I just want Josephine to be a happy and life-loving little girl.  I know she is happy.  I know we are lucky.

I just wish I didn’t feel so alone today.  I know therapy and talking with other parents of kids with Trich will help.

Just wishing it was now.