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 icandida on May 29, 2014 at 4:11pm
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Darling Darling lady I was in your space 3 years ago when my gorgeous little girl started to get massive bald patches on the back of her head aged 5 3/4. I could write an essay of the ups and downs but instead just this I know...Never shy? then teach her to help you be honest and confrontational. We do live in a cruel world but sunshiny little misses can teach a little if they have great mummys at home like you. Bella taught me to say 'hair can be faked you can't fake a bad heart..".if you're staring are you interested let me show you its called alopecia areata, can you say that?" "it really cool its not painful not catching only catches idiots who are mean its like a mean girl catcher heheheh are you a mean girl? nah I didnt think so..." her hair is not obviously bald but its very thin compared to when she was little and you can see shiny bald patches under her bunches and pony tails.I do believe in God but this really really really rocked my confidence in him. she with her wonderful spirit has taught me its not all about looks (think I was a little shallow) and that kids pick on weakness this doesn't have to be a weakness; Bella uses it as a character test maybe your little one could too. think I was meant to speak to you on here. I have never ever ever been on any of the chats etc and I have been on alopcia world for 3 years and I was keen to watch tv but wanted to send you love and support and big hugs and honest understanding...is this some of the roller coaster: angry wishing it on you not her guilty its not that bad really pissed it is that bad grrrr booo hoooo aarrrggh why why??? dunno babe but lots of love from Liverpool England
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Check this out ... http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food... It is just a healthier way of eating ... no harsh treatments. .this will surely help.. Now that it has just started for your girl .. some dietary changes will keep her from even getting it in her scalp. .
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Sybil I wish I had heard from you I drove myself mad my little girl had to de stress me which is so shaming. But all your advice is spot on and the guy with bald patches smiling in pictures as a kid you rock!! any ways bye bye and lots of hugs you guys are so supportive.
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Look, diet change is good and all of that but you're not an MD so please stop trying to say anecdotal evidence will cure or prevent this disease. If it worked for you cool, but don't push off non-approved treatments on anyone else.
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I am not pushing anything to anybody ... I just had to tell what worked for me. . Yes. I am not an M.D. . and neither did my dermatologist suggest diertary changes to me. . He only prescribed steroids and suggested rogaine. . I got the idea of the anti-inflammatory diet from 'Alopecia & Wellness: How I Got My Hair Back Treatment by Molly Vazquez '.. I was trying anything and everything that people suggested to me. .. and this is what worked for me .. and I am not the only person who has been benefitted by the dietery changes. . So I had to tell.
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Comment by morgan's mom on May 29, 2014 at 4:54pm
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HI, Kerry
Please be possitive for your girl :). we go through same sitation as you are facing now. I speak from my own experience ( my 6 years son has AA): Your girl 's scalp will be effected soon or late. you may check " children have Alopecia" at " discussion forums", one of the post by stacey " indian herbal works for my daughter" may helpful. My son is using the oil. Best wishe
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Comment by H's Mum on May 29, 2014 at 5:09pm
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Kerry, my heart goes out to you. My daughter developed AA 2 years ago, aged 12. Prescribed treatments didn't work, which prompted me to do my own research. Has your daughter been tested for celiac disease? My daughter doesn't have it, but since Sept 2013 has been on the GAPS diet and has gone from 80% hair loss on her head, arms and legs (oddly enough she kept both eyebrows and eyelashes) to 99% coverage! The aim of the diet is to heal the gut, which some believe to be a possible cause of AA. Before the diet she had lots of unexplained stomach aches and since going on GAPS these have stopped. It may not work for everyone, but it seems to have helped us. Good luck.
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Hi Kerry, I am so sorry you are going through this. My daughter, age 13, was diagnosed in March as well. I went through the same thing you are writing about. I felt like there was a hole in my stomach, I cried on my way to work, and on my way home. (And I am a child and family therapist, specializing in parents going through grief.) I had to stop myself from going on the internet. It seems that most information was the worst case. It seems I was endlessly searching for some answer to help us. The dermatologist gave us support as did my daughters doctor. Also, a ton of prayer. My daughters hair did stop falling out, and it is growing back. I have said a prayer for you as I do know what you are going through. Remember, she is the same, lovely girl. She always will be. Not all situations turn out with total hair/eyebrow loss and it can come back and never happen again. As long as she has a caring, loving mom, she will have SO MUCH going for her!
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Hi Kerry,
I had a similar situation with my 5 year old daughter, although she presented by losing her hair from the base of her scalp and dramatic thining on the top. She too had had repeated respiratory infections and steroids which predated the hair loss. Your pain is what resonates most with me, the feral fear for them,the praying and almost manic checking of photos for any sign of change. It passes. I found this site a huge comfort - check out the section specifically for children. It will give you a strength you didn't know you had and enough courage for you to face it head on for her. Ironically they handle it so much better than we as mothers do who see the world for the scary place it can be! Children are wonderfully accepting and if they see that you can see a positive they will follow suit. Find a good girlfriend who you can cry / confide in, read other families stories to realise you are not alone and pour a large glass of wine when everybody has gone to bed and decide to not let it beat you!!! Good luck...
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Comment by Jordan on May 29, 2014 at 5:30pm
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Hi Kerry,
I'm very sorry to hear about this. A child losing hair is a traumatic experience. For I've been dealing with my Alopecia since 11 years old. I'm 23 now. To relate to your daughter I too have asthma and exczema. I've grown out of the severity of those conditions, which I feel plays a major part in the immune system itself. If you can help her to avoid stressing by being as loving and encouraging as possible , it's not the answer or cure but it can help during the process and in years to come in. However for anyone reading I would say definitely to change your diet. (Blueberries, nuts, eggs) foods that promote nutrients for hair growth. You will be amazed how chemicals in food can affect the body. With that being said, I've changed my diet slightly and have experienced a change in growth. Usually with alopecia the hair falls on and off. I'd even shave to test ir and for sure it'd grown back. Strangely I lost ALL my hair on my "body" but as I grew older and my immune system got stronger (being active) it began to grow a little and brightside, stay. So I tried oils (coconut oil, jamaican castor oil, avocado oil, any natural oil) and slowly but sure they've been working. Now I'm no doctor im just a girl but these things have showed me difference. And since it's early, I pray it can have the same effect for your baby girl & better since it's early. Despite what happens, be strong for her and do what YOU feel is best, most of all accept what is and help her embrace her beautiful soul. Because in time (i say because of such a harsh society that takes time to grow up in order to recognize true beauty) that's what will only matter. ♥
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