Friday, October 24, 2014

Alopecia...what that?

The Wikipedia definition is: Alopecia areata (AA) is a condition in which hair is lost from some or all areas of the body, usually from the scalp.

I took a picture of it at the competition
Last April, when putting Melina's hair up in a high ponytail for her Nationals dance competition award ceremony, I gasped....what was that? There was a huge bald spot at the bottom of her scalp. Did she cut it? Nope there were no hair follicles (you can tell when a kid cuts their hair- I speak from experience). When we got home I searched her bed and her hairbrush and honestly just about everywhere for a huge clump of hair....nothing. We could not see a specialist in Ohio since our insurance was in Alabama. At least, without paying full price, so we waited a bit. It wasn't like she was loosing clumps at a time. 

But I will admit my mind was all over the place...what was wrong? Does she have cancer? Some sort of crazy rare disease?

It did continue to grow

When we got to Birmingham I made an appointment with a dermatologist. She was diagnosed with Alopecia. I had heard of it before, but didn't really know what caused it. How did she "get it?" And what can we do to stop it...and reverse it? It is an auto immune disease that can lay dormant in your body and then just "pop up" at any time. Stress can bring it on, but there is no real answer and we will never know what triggered it for sure. We have done bloodwork and ruled out ringworm and thyroid disease and other things that can cause it. Its hard not have an answer. This type A mom like to know the details!

The first thing we need to do is to stop the follicles from falling out. The hair follicles, when you look at them should be growing larger under the scalp (think triangle) but hers are opposite and getting skinnier. That is how the dermatologist can tell if the hair loss is still "growing". 

The first thing we tried was a very high dose of oral steroids. She was an emotional wreck for weeks. Nothing to do with the actual loss of hair but the steroids just made her super sensitive. I had to take deep breaths at times and realize that this is not her- don't get angry. When we went back month later, there was no fact, it was still growing. I was bummed...really bummed!! We went through all of that for nothing. 

Okay...on to the next step...steroid injections straight into her scalp. She was so brave!!! It might have hurt me more to watch than it did her. She got 7-10 injection in her head each month for 3 months (going up in strength each time)...still NOTHING!! 

The hair loss is still growing.

She is a girly girl, who dances, just moved to a new city and a new school, and trying to make new friends... AND She is THE MOST BRAVE girl ever!!! 

She is POSITIVE and HAPPY!!! On the first day of school she stood up in front of her class and told everyone about her hair loss and the injections and what she is going through. AMAZING!!!! I am SO PROUD of my girl!!! And I have told her how strong and brave she is and how I am so very proud that she would have the courage to do that!!!

This has only made her stronger!! As she looses more hair in noticeable spots, like the top of her head, she gets a lot of questions. She just tells everyone what is, how its caused, and then goes on...

Only once has she broken down to me and said, "I feel like I am going to loose all my hair!" What a hard moment for me. I want to be strong for her, but in that moment it was so hard!! 

Since the first two things did not work we are onto the last step. In laymen's terms they made her body allergic to an acid which we are applying to her scalp in order to trick her body into fighting that instead of losing hair.

The first step is to make her allergic to it. They did this by putting the acid on a spot on her behind. When it looked like the picture, it was working. It was time to apply to her scalp. Since it was a mix that had to be made up in a lab we had to find a special pharmacy to make it. The first could not do it, so they passed the script onto another one. I picked it up and applied it that night...

The next day she was red and itchy and it kept getting worse and worse. The school nurse called and I went in with some cream. I called the dermatologist and they were not concerned. The school nurse called again..she was miserable. I called the doctor back. Luckily I have a good repport with the nurse, because the doctor thought I might be overreacting. She and I had talked so much she knew I was not the crazy type and decided to look into it. She figured out that the pharmacy made 1% acid, which I applied to her head, when the actual dosage should have been 0.01%....Opppps!!!! So basically we burnt her head. It was awful!!! But again...she is THE BRAVEST!!!

We let her heal and are now applying the CORRECT amount of acid. We got back in a couple weeks to see if this is working. It has been an emotional roller coaster. But she is happy, is not sick, and its only hair. Do I want to fix it for her, YES!!!! But I know I am doing all I can, so I can't let any mommy guilt get to me. That won't help. 

The headband below was sent by a good friend; it covers the front of her hair...and LOOK how cute she looks in it! She LOVES it!!

Several people have even offered to cut their hair if she ever needs it. JUST AMAZING!!!

Hopefully we will go back and see some results....
Keep your fingers crossed for her!!!

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