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."