Einstein in da house...

LAS hair, in my experience, is like cotton candy: light, fluffy, ethereal, weightless. The hairs themselves are so very thin, like gossamer.  It's the strangest texture too.  So every morning, I'm faced with the same  problem of unmatting Caroline's matted hair.  Because I have been a lazy bad mom, I've yet to track down and purchase satin pillowcases to alleviate her hair loss and the matting at night while she sleeps.

When Caroline wakes up, it's like Einstein has entered the building. Her hair is so weightless that it stands up on its own. Gravity has no effect. It's a crazy look. I figure at least some of you LAS moms and dads know what I mean.  I'm used to this wacky look, but at a slumber party a few weeks ago, one or two of Caroline's friends made comments on her hair in the morning which, of course, hurt her feelings.  It's moments like those that have me searching the internet for wigs.

Careful detangling with lots of spray with short, soft pulls of the hairbrush to un-mat the hair is how I deal with crazy Einstein-hair mornings.  Caroline has taken charge of her own hairstyling but I have to remind her almost every day to pleeeease be oh-so-very careful when she brushes.  Even so, she loses lots of hair in our daily styling routine.

Look familiar to anyone?

I get so anxious about brushing her hair sometimes when it's like this.

LAS means scalp sunburns!

Here's another picture, this one from late summer, 2005.  Poor little Caroline's scalp is always exposed to the brutal sun so I must either slather her head in sunscreen or make her wear a hat. As I recall, getting a toddler to wear a hat for more than 36.9 seconds was akin to impossible.  Normal-haired older sister is next to her for comparison purposes.

Unfortunately, not much has changed in the way of prepping to spend time in the sun.  I always need to make sure Caroline has some sunscreen on her part, at least.  If she's going to be at the pool for hours, I usually just end up spraying her head with greasy sunscreen, which doesn't help the texture or ease of combing her hair apres swim- it's such a catch-22!

First and last haircut, 2005

This photo (not good quality, apologies) were taken after the one and only hair trim that Caroline ever had.  You can see her scalp, as usual.  My mother talked me into trimming Caroline's unruly hair.  I guess I agreed thinking maybe it would spark more growth. Looking back, it looks terrible and took years to grow any length at all.

You can also see her older sister next to her.  My oldest has light brown hair with large loose ringlets reminiscent of Shirley Temple. Poor Caroline is now sandwiched between two sisters, one whom has long curly hair, and one who has long straight hair.  Ironically, when the three of them are out with me in public, it's Caroline who gets noticed and complemented because her coloring is so striking.  That's certainly helped Caroline's self esteem.

A family history of loose anagen syndrome?

My husband's aunt (in her sixties now) claims that when she was a child, her hair was very thin, fairly short and very blond. She thinks she remembers having the same issues that Caroline did.  In the aunt's case, her hair grew in thick and fast as a teenager -- and also changed color as it grew in (to brown).  I'm hoping that Caroline's great aunt can someday find some pictures for us because that would give me a "why" behind this situation.  It would make me feel better to know there's a reason, that heredity might be behind the LAS.  Caroline may be very small because I'm very petite and had petite grandmothers - but I have no idea why Caroline would be hit with LAS.  If I can find any more information or photos of this family member who might have had thin hair as a child, I'll post it.

What about your family history?  Are there any family members or relatives who had hair issues as a child?  Did they grow out of it?  As there's no treatment for loose anagen (other than perhaps Biotin which may produce marginal improvement in some children), my greatest hope is that a little girl can simply grow out of this syndrome.  Seeing as Caroline is almost 8 and a half with no real improvement, I try not to pin my hopes on that either.  We just work on doing the best we can do with the hair that she has, and to continue to be feel blessed and grateful that this is a cosmetic issue, not a health issue.

By 2005 I realized her hair wasn't normal

Here is Caroline at 2.5 years old.  There were a few bald patches where her hair had come out in handfuls several weeks prior, completely freaking me out.  Her scalp is visible.  Today, her hair has become significantly curlier, but the thickness hasn't changed much.  And she's still very much a striking blond!

It's my theory that Caroline's loose anagen syndrome is what makes her hair a platinum blond while her sisters have brown hair.  Her eyes are a dark brown along with her eyebrows.  It's a unique coloring. My mother always jokes that it's like Caroline took a bottle of bleach to her hair.

About the time these photos were taken, I was beginning to worry about why Caroline's hair never grew.  Never. Ever. Grew.  Our pediatricians did not seem concerned about her hair but it just seemed so odd: why would a kid's hair not grow?  For a while, I hoped it would get better on its own and so I didn't push the issue.  But when Caroline continued to be very small and not grow very quickly, I became worried that perhaps the hair issue was a symptom of a larger problem that hadn't been detected yet. She was sent for some blood tests that came back normal, except for a slightly elevated level of potassium.  Caroline's still very small for her age with a thin frame and I still think the LAS and growth are somehow related.

Welcome to the world of Loose Anagen Syndrome

If you're reading this, you're here because you probably have a child with LAS, or Loose Anagen Syndrome. Thank goodness that this syndrome is not harmful or fatal, but is only cosmetic in nature. But if you're the parent of a child (probably a little girl) with loose anagen syndrome, it can break your heart watching her struggle with it. That's the case with me. My sweet, beautiful 8 year old daughter, whom I will call Caroline in this blog, lives in a world where every girl has thick, luxurious, long hair. Caroline's two sisters have hair down their backs. LAS is always there to remind Caroline that she's different.

I knew for a long time that Caroline's hair wasn't "right." I scoured the web for information between 2005 and 2007, found the bare minimum of information on LAS but knew right away from the symptoms that Caroline had this syndrome. She was diagnosed by the simple act of a pediatric dermatologist examining Caroline's hair under a microscope. And, there was nothing to be done about it, no treatment to be had.

I created this blog because there is really no information out there. And I understand that; this is not cancer or a debilitating illness or disease. But perhaps my experience with and journey through this syndrome will serve to inform and help other parents help their kids deal with having "different" hair. In coming days and weeks, I'll post more detailed information, photos, and links to the best information I can find on the web, and continue to document Caroline's progression (or lack thereof!) and related issues (like self-esteem, etc.). I'd like to have readers (when there are some, someday) perhaps contribute some photos and/or stories of their own to share. See you soon.