Some Hair?

Since I've started this blog, Cole grew some hair.  I'd say about 3 dime-sized light brown patches over his head have popped up.  Otherwise, little stray blondes are on the rest of his head.  His eyelashes are fully in and have been since about April.  He has one eyebrow that likes to stay in, and the other has half that likes to come in and out as it pleases. 

We took Cole to his yearly dermatologist appointment with Dr. Gellis at Children's Hospital in Boston.  That was probably in the beginning of July.  The doctors were very pleased with his hair growth and said that his eyebrows and lashes being in were the hardest part usually.  And that the fact that he had hair growth at all following the eyelashes and brows was a great sign. 

Since then, we've shaved the little patches off of his head.  People ask why, when he has some hair, why not leave it?  While it may be for other parents, it wasn't for us.  The patches were very long and straggly looking, so we decided to just clean shave them off.  Since doing this, his hair has started falling out again.  The patches have stayed, I think.  But the blonde stragglers have been fewer and fewer. 

Through talking with other parents and the doctors, I've learned that hair growth will come and go.  Especially in the springtime.  There is no known reason why, but apparently springtime is a common time where hair comes in and then it falls out.  I have a feeling this is Cole's case, considering the stray hairs are falling out again.  The doctors said that exposure to the sun sans sunscreen on his head could contribute.  We've been doing that a bit, but he once started getting burned, so we vetoed it. 

It's not a big deal, but it is what is currently happening with Cole.  Otherwise, he loves swimming in the pool and is very excited to start gymnastics back up in the fall!

Not Cancer.

Cole is a huge flirt.  He always has been!  He loves going to the store so he can say hello to people and giggle and get little compliments from everyone.  (An elderly woman asked him on a date last week, to which he replied, "Okaaaaaaaay!")  Being a cute, flirtatious baby, he tends to draw a lot of attention to himself. 

On quite a few occasions (I can't count how many now...) complete strangers have asked either indirectly or not, if he has cancer.  I have a few feelings on this. 

First of all, it is insane how some people can just come out and ask these things.  Not only do I think it silly to assume someone has a specific condition, but the amount of people that have just come up to me and asked this makes me speechless.  I can't imagine ever walking up to a stranger and asking them if they/their child has cancer. 

I don't necessarily think that these people are ignorant, but I definitely think, "wow that guy was ballsy."  Or at least something along those lines.  Realistically, most children that are bald probably have gone through some sort of cancer treatment.  But even before I knew what alopecia was I never assumed someone had cancer when bald. 

As of late, Cole has grown some hair in.  It is patchy, weird looking, and not even at all.  He has his eye lashes back almost completely, and some eyebrows, though I've noticed those are falling out and coming in rapidly and repeatedly.  With this patchy hair, I've had more comments than ever.  Sometimes people ask what stage he is at, what kind of cancer he has, or how his treatment is going. 

Sometimes the comments catch me off guard and I am confused.  "Oh, how is his treatment going?"  "What?"  I just don't even think about it, so it doesn't come to mind until they ask.  Then I take a moment to educate them on alopecia and they are usually very relieved that he is not ill.

Then there are the people who just ask me why he is bald.

What I've learned from all of this is that most people would probably rather you ask than assume what is going on with them, what they have, etc.

CAP - Children's Alopecia Project

Throughout all of this annoyance and torment, we were looking for something...anything that could just make us feel like others knew what we were going through.  Don't get me wrong, the support of family and friends was and has been completely amazing and appreciated!  But to know that someone else understands what you are going through is an entirely different thing.

We stumbled upon the Children's Alopecia Project.

A group dedicated to supporting children with alopecia by building up their self esteem and providing them the opportunity to speak with and meet with other children with alopecia.  Great!  Though Cole was/is young, we really needed to talk to other parents who understood this.  It has been so helpful.  If you or anyone you know has a child going through this, it is an amazing group!  They have chapters around the country.  Even if it is somewhat far from you, you can at least join their Facebook group and talk to others.  It was a while after diagnosis that we found CAP, but it really is just a completely supportive environment. 

There are a lot of routes you can take when it comes to treatments with alopecia.  From doing absolutely nothing [which is what we are doing] to doing acid treatments, and even steroid injections.  Because alopecia is a disease that is not widely researched and in reality, they do not know why it happens, it is super helpful to speak to other parents/patients that have gone through this.  If you have read back in my blog, you will know that we went to Children's Floating Hospital at Tufts in Boston and got literally no answer.  Not even a diagnosis.  Fortunately for us, we live in an area where we have a lot of choices on hospitals.  But some people aren't as fortunate and get one answer and are stuck with that answer.  That is another reason why CAP is so helpful.  There are so many answers to one problem and not everyone has access to those answers.

Once Cole is older, I know he will find himself happy in the presence of other children with his condition and not so alone in his thoughts and burdens!

Though, at 2, how many burdens can you have, really?  :]

Another Visit To Children's

My mum and I took Cole to his 6 month follow-up appointment with Dr. Gellis at Children's Hospital in Boston again to see if there was any change or improvements. 
Nope.
He basically told us that there is just nothing to be done right now.  He said he sees over a hundred children a year with alopecia-related problems and that within a year, usually all but one of those children either have improvements, or the condition resolves itself.  If the condition did not improve within a year, then the chances of him having the condition as severe as it currently is will probably be a life-long thing.
Okay.  I can deal with that.

Otherwise, we learned nothing new. 

So then what?

This is the part where my wife and I get all emotional about our baby having an incurable, unpredictable condition.  We came to terms with the situation and let me tell you, it wasn't easy.  Our son was none-the-wiser; a happy and sweet little guy, and here we are all teary-eyed thinking of his future.  It was not easy to deal with the realization of things and it took us a good amount of time to "get over it."  Or at least get over it as much as we could.
Over the next few weeks, the rest of his hair came out.  His eyelashes and eyebrows had slowly been leaving this entire time, too.  So he was completely bald and shiny.  I always wondered how some bald guys have shiny heads....it's apparently natural.  Who knew? 

Everyone started suggesting everything left and right to us.

Suggestion:  Take him to this doctor in Florida for a billion or so dollars to use a hyperbaric oxygen chamber.
Reaction:  What?  No!

Suggestion:  Try a gluten-free diet like they do with autistic kids.
Reaction:  What?  No!  His pedi said he had no actual signs of gluten intolerance.  Why would we bother doing that?

Suggestion:  Get him a hairpiece.
Reaction: What?  No!  (abrupt laughter)

Suggestion: Why not try steroid injections?
Reaction:  Because I will kill you.

It's not that these people had bad intentions, they just obviously did not understand what all of this meant.  He isn't sick.  My son isn't sick.  He has an incurable disease that makes him have no hair.  That is all.  How come no one understood or accepted it? 

For a long while, it was just a lot of ups and downs.  We were sad about it.  We were upset about it.  We shed a tear or two over it.  We didn't like how people constantly talked about it, as if there was nothing more to our child.
I know he is healthy.  I know everyone thinks and says to us, "at least he is a boy."  [This totally pisses me off, by the way.]  I know it could be worse.
But if you were in my shoes, you would feel similar.  I think this bothered me, too.  Unsolicited advice as to how we should feel.  Until you are in the same position, you have no right to speak about how we should feel. 
A lot of people who knew Cole would say something about his hair being gone and we would tell them he had alopecia, explain what it was, and then they would just be sympathetic, but normal about it.  Which, I think, was the best thing to do.

It has been over a year now. 
Things are so much better now!  While Cole is still bald, we have just dealt with it and moved on.  It is a part of him now and I really can't imagine him with hair!
Time heals a lot of things!

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.