An individual doesn't get alopecia, a family does

This is my story.

My wife and I first noticed that my 5 year old daughter Akanei was shedding her hair back in December. We would see hair when sweeping up the floor, hair left on her bed and pillow, and hair in the drain when she took a bath. We didn't think anything of it, since she still had a full head of her on her head.

The next month in January we took a trip to Orlando, Florida(which was awesome btw). Akanei got carsick one day while riding in the car and my wife pulled her hair up and tied it back while she was vomiting. That was the when my wife and I first saw the extent of her hair loss, which was mainly on the back of her head above her neckline. This area is usually not visible so we were in shock. My wife immediately made an appointment with her pediatrician for when we got back to California.

After her appointment with the pediatrician, blood work, and derm appointment...she was diagnosed with AA. The dermatologist said that she was 95% sure of the diagnosis and said that we can do a biopsy to confirm it. My wife and I decided not to put our daughter through the pain of a biopsy so at that time we passed. Two months later Akanei started to lose part of one eyebrow along with continued loss of hair over her whole head. The dermatologist recommended doing the biopsy so we went ahead with it. Akanei did the biopsy with no problems, and even the doctor and nurses said that she did better than a majority of the adults that have it done.

Through February and March, the hair loss became very rapid and severe. she went from having a full head with light shedding to bald spots and thinning all over her little head. That was a very emotional time for my wife and I. I spent many nights praying over her while she was sleeping, asking God to please take this disease away from her. Many nights I would sit and cry to myself when thinking about my daughter, I mean what parent wouldn't. We do all we can to protect them but when it is something out of our hands to control we feel helpless.

The biopsy results came back and the dermatologist said that it came back negative AA. Her new diagnosis was Telogen Effluvian which is supposed to be a temporary thing. Doctor said that her hair should come back in 4-6 months. This was incredible news!

A month after this I noticed a bald spot on my chin. I didn't think twice about it, until my wife noticed a bald spot on the back of my head. Now it got me wondering, so I made an appointment with my primary doctor. He diagnosed me with AA and I decided to wait and see how it develops. Over the past month or so it has grown in size so I made a derm appointment(which is for next week, we'll see how that goes).

So what originally was good news for my Akanei, has now grown into skepticism. Did she get misdiagnosed with NOT having AA? Her hair loss has continued and now she is almost completely bald. I can now count the handful of hairs that she has left on her head. If this is TE and not AA then why has this continued and not grown back like the doctor has said?

My wife and I are going to get a second opinion on her diagnosis. We are picking up the biopsy samples from Kaiser and our good friend(Akanei's godfather) that works at Cedars Sinai Hospital will run his own tests. Hopefully this will give us some definite answers as to what her diagnosis is. In my heart I feel that she has Alopecia and not Telogen Eff. I hope and pray that I am wrong...

So whatever God has in plan for my daughter and I, I can only embrace it with open arms. I may not agree, and I'll tell him every day, but I thank him for all the blessings that he has given us.

Thanks for reading my story so far, I will keep you all updated.    -Mike

"You were given this life because you are strong enough to live it."

Views: 2029

Comment by Vanessa on May 29, 2014 at 9:28am

Akanei is so fortunate to have such supporting parents. May you always have the strength to keep on being the best parents that you are. I'm sure you being there for her like that will definitely make her whole journey (whether it's TE or AA) a whole lot easier. 

Comment by Debbi Fuller on May 29, 2014 at 9:28am

Just my personal opinion, but I'd steer clear of wigs unless she brings it up.  You don't want to make her feel that she isn't 'good enough' just the way she is or that she has to 'cover up'.  I think of my "hair" as a fashion statement, not something to hide behind.  5 is a bit young to bother with hair.  It would end up under the couch or in the toy box.  She's much more comfortable just as she is.

Comment by Mike Cas on May 29, 2014 at 3:25pm
We haven't gone there with the wigs yet. It has came up between my wife and I, but so far Akanei is just content on being her happy little self, hair or not. If it is something that she wants, then we will support whatever her heart desires. She is starting kindergarten later this year, and my wife isn't sure how the other kids will react to her. I guess we will wait and see how things play out...
Comment by Dena on May 29, 2014 at 4:14pm

Mike...Kids are very curious and are going to ask questions. I have always made it a point to educate my daughter so she is prepared to explain her condition. It always frustrates me when a parent tries to stop their kids from asking about my daughters baldness. When a kid has a question they are not going to be satisfied until it is answered and it always seems to make the situation awkward if a parent is hushing them. Those are the times my daughter seems to feel the most self conscious. With young kids, she simply replies she has Alopecia and it is like she is allergic to her hair. All of the kids seem to be fine with this answer. I think a lot of kids only associate baldness with cancer, so it is important to know she isn't sick. It surprises me the amount of kids that ask to feel her head. It seems like once it is o.k for them to talk about it they loosen up and everything is back to normal. I would suggest talking to her teacher and seeing if you can explain it to her class. NAAF has educational material to help. We have gotten my daughter a wig through Hair Club for Kids. It is free until she is 17. She enjoys going in to have them put on the wig and fix her hair, but she never wears it at home. But it is fun to play dress up in sometimes. In fact we went yesterday and after leaving the building she pulled the wig off in the back seat because she was hot. The wigs really don't stay on an active kid. I figure it will be there if she ever feels the need for one. The one thing she does love to do is wear temporary tattoos on her head. It draws a lot of attention and her friends love it. There are also people who do henna crowns and she is looking forward to having that done in the future. We try to have fun with it. I am not sure how kids will react when she gets older, but for now they really don't seem to care once they figure out what is going on.

Comment by Mike Cas on May 30, 2014 at 2:42am
Thanks for the info Dena! I totally agree with you on educating your daughter to the fullest. I want to be exactly where you are at, it sounds like you have done such an awesome job so far with your little one...
Comment by Lori-akaMimi on May 30, 2014 at 9:49am

Thanks for sharing, Mike! You are, indeed, a great Dad. I think that the best, and most important, thing you said was, "I want her to understand what's going on, and I want to be truthful to her. I want her to be proud of who she is, love herself regardless of how many hairs she has on her head, and I want her to be able to tell people about her condition and make people aware of alopecia." Bravo!

Comment by Bruce on May 30, 2014 at 6:50pm

We say the same thing in the amputee community--an individual doesn't have an amputation; the family does.  I've heard cancer survivors say the same.  One of the sweetest things I've seen on Alopecia World is a picture of a young guy named Jake with AU whose father shaved his head in solidarity. 

Best of luck to you and yours.

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