Alopecia World
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A mom needs encouragement
Hi. My name is Kerry, and I think I decided to write this blog mainly to get out my feelings of frustration, helplessness, and fear for my 5 year old daughter.
At the end of March 2014, my daughter brought home some adorable school pictures. When I looked at them, I noticed her eyebrows were SO full, and looking at her then, they had drastically thinned. Immediately, I began trying to think back and looking through cell phone pictures of her and I discovered that this had begun approximately the end of March or beginning of April.
This year, she begged me for one of those silly Flippy hats, and I obliged even though it was a little snug on her head. I thought maybe the hat had rubbed off her eyebrows, or she had been doing it herself (allergy season is exceptionally bad here in WNY this year - but I'll get to that, too.) However, when my 93 year old grandmother asked, "Kerry, what happened to her eyebrows?!", I began to grow a little concerned.
It doesn't help that I am a nurse, and the plethora of things that ran through my mind was stressful enough. I started to google (which is ALWAYS a mistake, right?!), and found alopecia, which I had heard of before. I kept saying to myself, "Man, this sounds SO much like her."
For the first 3 years of her life, she suffered from asthma or "reactive airway", which she sometimes needed a nebulizer for; in the last 2 years, she has grown out of this. This year, she developed atopic dermatitis (eczema) on her little cheeks and nose, which I diligently applied baby Aveeno eczema to until it subsided (but it still comes and goes with the weather), I believe this is secondary to her seasonal allergies. Also, she got sick for the first time with strep throat this past March, before all of this occurred. They treated it with a course of antibiotics that were too strong for the poor little thing, and once they lessened the dose, she was able to tolerate it and the strep went away... 3 WEEKS LATER. My father also believes at one point in his late 40s, he had alopecia in his beard, which eventually resolved itself. All of these things together, lead me to believe that she was a dead ringer for alopecia.
LONG story short, I ended up taking her to a local dermatologist who her diagnosed her with alopecia areata. That night, and for probably a steady week afterwards, I sat on her bedroom floor next to her bed and cried. I am not religious, I am slightly spiritual, but I was begging any higher power out there to please just take this away from my baby girl. My beautiful baby girl. My bright, cheerful, friendly, NEVER SHY 5 year old girl.
Don't get me wrong, I am forever grateful that this is an illness which bears no physical illness, but the world we live in today can be so cruel about appearances. I know I have to be strong for her, and show her that she is more than just the hair on her body.
I took her to another dermatologist, 1.5 hours away at a pediatric hospital, to get a second opinion; the diagnosis was the same and they offered me some Protopic which isn't covered by my insurance. I am still not even sure whether or not we will try any treatment, as I am waiting to see how this all unfolds.
So far, her scalp has not become involved. I do her hair for school every day and have been keeping a close eye on it (I don't notice any hair in the drain or on her pillow). Currently, her eyebrows have not lost anymore hair (or they are falling out at such a slow rate that I cannot tell). I drive myself crazy taking pictures of her eyebrows while she sleeps.
I am attempting to seek out other parents who have had to endure this, and perhaps some advice. Just in case, I have to prepare myself for the worst progression possible. Right now, she knows that her eyebrows are "missing" but she really couldn't care less. In fact, after we saw the second dermatologist, and she actually heard the words ALOPECIA AREATA, she was making a song out of it. She really doesn't know there is a possibility that she could lose a lot of hair, including that on her scalp. Being 5 years old, I'm afraid this will just cause her to worry. She is the type of child who would ask consistently, "Mommy, will my hair fall out today?"... I guess for now we are taking it one day at a time, but am I doing the right thing by keeping this bit of information from her?
Has anyone else experienced AA which contained itself strictly to the eyebrows? I haven't been able to find much on eyebrows and AA. Usually, the presentation begins on the scalp and the eyebrows and eyelashes tend to fall out later, or as it progresses. I find it very unusual that only her eyebrows are involved (we have had her thyroid tested along with every other blood test you could think of). I also find it very unsettling at the same time, constantly on edge that her hair is going to begin to fall out.
If anyone has any advice that can help bring me back from the edge, it would be greatly appreciated. It has been a few weeks, and I have had some time to come to terms with it, but I am still struggling as a mother. I want her to be confident. I have found a few parents of children with AA, AT, and AU through social media, and they were all very helpful and kind.
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Comment by Jorja Porja on May 30, 2014 at 3:09am
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Hi there, My five year old also has AA and spent her first year at school in hats (up until her teacher asked me not to send her to school in her hats, as they were interfering with her learning). We got a wig for her then. But on a positive note some children can have episodes of AA that has a quick turn around. Hers was two years, such a blessing that it didn't drag on for years. I had a lot of people at our church praying for her. She lost round 60% of her hair. I know for a fact that it was mainly her father, my mother and myself who took it hard. I cried at a drop of hat, but honestly she was fine, she wasn't teased at school. I thank God that she sailed through it all. I just pray that she doesn't get a relapse as it is a life long condition with no cure. I can only hope that that was her only outbreak. Hope you keep strong as she needs you not to make a big deal out of it in front of her. Kia Kaha (Be strong) I have a facebook page that have photo of her "Alopecia - No crowning glory" Bless you Carolyn.
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Comment by Wendy on May 30, 2014 at 3:23am
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Hello...this is the first time I've commented on a post here...
About 2 weeks ago, I discovered a large bald patch behind my oldest daughter's left ear. It's well hidden for now, and I realize losing her hair isn't the end of the world, but right now I'm anxious, terrified, and overwhelmed at the thought of what her future could hold.
I imagine you're probably feeling many of the same things.
That same daughter of mine was diagnosed with Type 1 Diabetes three weeks after her second birthday and Celiac Disease when she was 5. She pokes her fingers 8-10 times a day, has worn an insulin pump 24/7/365 since she was 3, and has faithfully adhered to a strict gluten-free diet for more than half her little life.
Given her existing autoimmune history, I'm downright angry that she should have another diagnosis to contend with right now.
All of that being said, I've been here before. Here -- where anxiety, fear, and anger mix and mingle as if they're wining and dining over dinner. Based on my experience, I want you to know that your sweet daughter will amaze you no matter what ultimately happens with her eyebrows and/or hair. You will witness her overcome challenges and rejoice from the mountaintops when she comes out stronger on the other side. Your daughter is still the same little girl she was before, and her hair loss won't define her or put her inside a box of limitations. You will grow alongside her, constantly in awe of the person she will become. You will admire her beauty from the inside out. You will learn new lessons about the world and see other struggles in a more compassionate light. Your family will rally and, one day, it will feel as if life has always been this way.
Now if I could just convince myself of everything I just said...
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Greetings,
I am AA. I lost 90% of my hair, on my head only, in 2008. I called my mother, a woman that loves The Lord to let her know I had to get wig. She drove about 2 hours to see me because she couldn't believe it had happened so quickly, after all, my entire life I was described as the girl with the really long, thick, jet black hair, how could it all be gone. She came and burst into tears and this was our conversation.
Me: Why are you crying?
Mother: Why aren't you crying?
Me: Because I am not sick. It just hair loss. Jokingly I said o'ye of little faith.
Mother: Wow, where did you come from, (with a huge smile).
She had to walk away and I heard her call my dad and say "I should be consoling her but she is consoling me. I am amazed." So I told you that story for this reason, my family loved me so much throughout my life, and their faith walk by example which included their prayer life, I knew that whether my hair came back or not I would be okay simply because of what they had instilled in me. So when my mother worried, I reminded her of the many biblical scriptures she used during times like this, as well as the fact that for our belief prayer changes things and when she saw that come to life in me, she handled things better. She was never just okay with it because I am her daughter, she loved me and something was indeed wrong but she was less horrified. So if you're strong for your daughter and love her, as I can tell you do, she can conquer whatever ugliness the world throws at her. Keep the faith, today I am again described as the lady with long, thick, jet black hair oops with a little silver lol. Be blessed!
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Our daughter was a Freshman in college when she first experienced AA 3 years ago so our experience is much different. She has had execma since birth and uses Protoptic for that. We have been to more doctors than you can imagine; covering 3 states-in NJ where we live, specialists in NYC and in DC where she attended college. We also signed up and participated in a Best Doctors program offered by my wife's employer and at the end of it all we believe that there are things that you can do to help the situation: 1. Diet and Nutrition 2. Limit Stress 3. Cortisone shots as necessary from the dermotologist 4. Chia Seeds from a Health Food store. The latter was recommended by the doctor at Best Doctors 5 months ago and the results have been amazing. Try and stay positive and don't assume that it is hopeless because it is not. She will be fine if you are fine.
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Comment by Lori-akaMimi on May 30, 2014 at 8:45am
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Hello, Kerry - My 5 y.o. granddaughter was diagnosed with AA in February. Just so you don't think I am once-removed from the situation, I am not 'just' a grandmother to her - I am like her 2nd Mama. I am, and always have been, her "rock." I realize this is very new to you, and (naturally) your emotions are still running high, but you will reach level ground (in fact, because you are obviously a great Mom, you already are!). You know your child better than anyone, so you are the best judge of how to handle this - what to tell her, and when. In our case, shortly after her diagnosis, I told my Babygirl what she had. I explained that she's NOT sick, that it's not contagious, and let her know that she's not alone ("lots of other people have this, too"). That seemed to help a lot. Our conversations have since progressed. She has now devised her answer and explanation, should anyone ask her about her hair loss. And, do you know what the last line of her explanation is? "It's just hair," she says, with a shrug! She is one amazing little girl!! And, I'll bet your daughter is, too... Good luck, and god bless!
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You obviously love your daughter so much! My heart goes out to you. My own hair loss was difficult, but to be the mother of a child with this- that would be even harder, I think. I came upon some information that might help. This is a youtube video of tips for using caster oil treatments to encourage eyebrow regrowth. Hopefully it will help you.
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You obviously love your daughter so much! My heart goes out to you. My own hair loss was difficult, but to be the mother of a child with this- that would be even harder, I think. I came upon some information that might help. This is a youtube video of tips for using caster oil treatments to encourage eyebrow regrowth. Hopefully it will help you.
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I sent you an email. Hope you received it
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Comment by Krystle Adams on March 23, 2016 at 6:12pm
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How is everything now
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