Tag Archives: www.trich.org

Seriously…STOP with the Hair!

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As adorable as Josephine may look in the first picture (God, I LOVE that smile), I hate looking at it.  Her hair was finally back and beautiful and we CHOSE to get her haircuts, both around Easter and in early July.  But, once again, I was forced to make a decision I didn’t want to make – same as last year at this SAME time – to cut off most of Josephine’s hair because of TRICH.

I wanted to cry while explaining the the hairdresser what I wanted (or didn’t want is maybe the better way to say it), but I held it back and pressed on.  Inside, though, I wanted to shout at anyone to help us with this disorder and get my girl to stop pulling.

So, as we head into her 3rd birthday, part of me is saddened to know that her birthday pictures, while filled with joy, love, friends and presents, will also hold the horrible mark of Trichotillomania, a balding head with bits of peach fuzz sprouting all around.

Trich, Trich GO AWAY! Don’t Come Back ANY DAY!

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Contrary to the title of this post, Josephine’s Trichotillomania has reared its ugly head.  Ironically, it is exactly ONE year ago since her first major pull.  Why now?  Josephine is a happy and funny little girl with a love for fish, paper and her brother.  So what is it about August?

My guess is as good as any, but think it’s certainly a path to consider…

Late July of 2010, Josephine started crawling on her own.  New words started emerging.  Progress was everywhere.  Early August of 2010, Josephine started pulling her hair.  She was overwhelmed by what was happening and found comfort in her own hair (and later, mine).

The hair pulling never completely went away, but certainly subsided enough so we could start brushing, styling and cutting Josephine’s hair.

Now we are in August of 2011 and again, we are seeing major progress with her skills – standing independently, cruising and walking independently (when the mood strikes her), improvement on a cognitive level – a lot for a 3 year old to process in a relatively short amount of time (I say relative because everything happens on “Josephine time”, not “the rest of the world time”).

However, while we are seeing great strides, Josephine again is having difficulty processing all these strides and takes it out the best way she knows … hair pulling (Trichotillomania)  and hair eating (Trichophagia).

I am very bothered, both in my heart and in my head, that the Trich as come back.  I have been told it may never go away, but I have also been told that Josephine is so young, so there is little data available to accurately give a prognosis.

I know another child with Tet 8p that also pulled hair, but that symptom seems to have disappeared for her.

So, is this a new symptom for Tet 8p that needs to be explored?  Would she have had this disorder regardless of her chromosome triplication?  Who knows and I suppose it’s best not to go there because I have to deal with the here and now and not the what ifs.  What ifs will cause ME to pull out MY hair and Lord knows, we don’t need another girl in this house that’s going bald!

My heart hurts because there is nothing worse than watching your baby hurt herself to soothe herself.  We try all we can to control her emotions and keep her calm, but when you are in the car on Route 80 in Pennsylvania or on the Garden State Parkway and a major meltdown occurs, little can be done to calm her down.  We stop the car, relax Josephine a bit, start driving again and the whole thing happens over and over again.

Do I wish Josephine could control herself and her Trich?  Absolutely.  Do I wish I could let Josephine’s hair grow long enough to make adorable pony tails?  Absolutely.

Do I think hair is what defines her?  Absolutely not.  Josephine is who she is, hair or no hair.  Just trying to ride out this next wave and keep hope that we can find a cure or treatment to help our little girl and this thing called Trich.

THE HAIRCUT!

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Yes, the word any parent, whose child suffers from Trichotillomania, loves to hear…HAIRCUT. Not because Josephine’s hair needs to be trimmed up after pulling episode. Because Josephine hasn’t pulled any hair OUT in some time. Granted, we are keeping her hair short, so she can’t pull any out (she is still grabbing her hair when frustrated, but can’t get ahold of any). However, the idea that I CHOSE to take her to get a haircut makes all the difference in my heart.

Tricho…WHAT???

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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.