Diagnosis!

Even though the pedi has notes that he started losing his hair in October of 2011, we really didn't get a diagnosis until his 1st year checkup because he was so young.  The pedi said that it looked like alopecia of some kind and that she wanted him to see a specialist.  She wanted us to go to Children's Hospital in Boston since this looked pretty bad, so I called to make an appointment.  They couldn't see him for 3 months.  I asked the pedi if that was okay and she said no, so she told us to try Children's Floating in Boston.  I don't discriminate against hospitals in this area.  Honestly, all hospitals in Boston are good and I feel lucky that we live in a place where we can just drive right into town and go to some of the greatest hospitals! 

Floating Hospital For Children at Tufts New England Medical Center - March 1, 2012
I had been to Tufts before, so we went in to get Little Man checked out.  My wife was working, so my mum, my sister, and I took him in.  We saw Dr Loo.  They made him get into a little gown and it was so cute! 

 

So we went to see Dr. Loo and decided that no, we did not like that he literally had nothing to say about the subject.  He did not diagnose Cole with anything.  He said it could be temporary and that it probably would resolve itself before we even saw him again.  That there were no tests he could run or anything to see what was going on.  Okay, useless.  He did ask to see pictures of him when he had hair and seemed unphased by that.  I was kind of irritated because, HELLO!  My baby is going bald and you think it is completely normal. 
The results of this went to the pedis office and I sort of forgot about it, thinking that was that for now and we would address it if it seemed to worsen.  Cole happened to get a really bad patch of eczema, or sick or something, so I took him in to see his pedi and she ended up addressing the notes from Dr. Loo.  She was unhappy with the results as well.  She ended up getting us an emergency appointment with Dr. Gellis at Childrens Hospital Boston like 3 days later.


Children's Hospital - Diagnosis & Explanation 
My mum and I took Cole to Children's Hospital to see Dr. Gellis [again, wife was working.]  He checked Cole over, took a look at his skin in general, his head and what was left of his hair, his eyelashes and eyebrows, and then his fingernails.  He said that it was definitely alopecia.  Alopecia areata, to be exact.  He gave us a lot of information verbally and some literature, too.  Then he grabbed a sheet of paper and drew a diagram of what exactly happens to someone with alopecia.  It was a good explanation, too, and I use it to this day when people inquire about it.  There are these lymphocytes, which are like a blood cell, and they see the hair follicles as what would be similar to a disease.  So they attack the hair follicles to the point where they shut down and the hair falls out.  So, similar to white blood cells gathering to an area to fight infection, the persons body essentially fights off their own hair.  He looked at the fingernails because people with alopecia tend to have these ridges in their fingernails, which Cole has.  So after explaining what was going on to us, he told me there is pretty much nothing that we can do right now.  He is only a year old and if we want to try essential oils, that is pretty much as far as we can go.

The Problem With Alopecia
There are a lot of problems with alopecia, but!  Besides your body thinking that hair is a foreign, evil object embedding itself into your skin....
1.  The unpredictability of alopecia is awful.  It is completely unpredictable.  You could start off with a full head of hair, lose it all within 2 weeks, and never ever see it again.  Or it could grow back.  Or it could grow back partially.  OR, it could grow back and fall out again right away.  Or you could stay bald forever.  Same with eyelashes and eyebrows. 
2.  They don't know exactly what causes it.  Sometimes it's genetic, sometimes it's not.  Why does my child have it?  Who friggen knows.
3.  Treatment-wise, what works for one person, might not work for another.  Some [older] alopecia patients try acid treatments on their heads and it doesn't work.  And supposedly, it's painful, too.  Some try steroid injections and it doesn't work.  So it's not like one of those things where you can get a vaccine and it goes away or take some medication. 

....and about a billion other lame things!

Why I've decided to make this and a timeline

Since we've been dealing with a long and no-end-in-sight battle with alopecia, I have decided that I need to put my thoughts somewhere.  I don't know if anyone will ever find this and be helped by it or not, and I don't know if I care.  It is a tough thing to go through and deal with and I just needed to put my anxiety and frustration somewhere besides my head.
Alopecia is defined as an absense of hair.  But there's a bit more to it.  It is an autoimmune disease where these lymphocites attack the hair follicles as if they were a disease.  They attack them so much that they fall out.  It can be anything from small round patch as small as a dime to the whole head, or even the whole body.

A Timeline:

April 28, 2010: My wife and I are expecting our first baby after some fertility treatments [Lesbians like us need those, you know. :]  Yay!  Ironically this is the same date of my dad's death only 3 years prior.  This is why I can even recall the date.  We later find out that it's a boy and I am as excited as anyone could be.  We knew we wanted more than one child, but I really wanted a boy first.

January 8, 2011:  Our little man decides to make his way into the world.  He is the cutest thing ever and his cheeks are bigger than the rest of his body.  Right from the start, he is the easiest and sweetest little baby.  [He still is!]  He is born with a little bit of hair.




September 2011: We are able to use shampoo on his "full head" of hair! It was thickening into these really cute blonde locks that would curl when they were wet.

November 2011:  His hair starts to thin a bit.



December 2011: Hair starts to rapidly fall out and most of his curls are gone

 

 

January 2012: First birthday photos.

 

March 2012: Most of his hair is gone now. What is left is wirey and poofy.  He probably became a full-on q-ball in April.



October 2012:  Not everyone can get their head painted! :]

January 2013:  A current photo with mister and sister!  Still a nice little q-ball and the sweetest little guy!  :]
 

 

 

 

So that brings us to current day.  Since that last photo was taken, he has some eyebrows and full eyelashes.  He is a normal 27 month old, just bald.  He has tantrums, goes to gymnastics, has best friends, laughs at everything, chases our dogs, hugs and kisses his mommy's and sister constantly, uses the potty, pretends his dinosaurs are babies, etc.  He does the same stuff - just bald. 
I will elaborate later on what our journey has been like so far.  Emotions, fears, and general alopecia life.