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!