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 Noreen Hashmi on May 29, 2014 at 5:39pm
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Hi,
Ive had alopecia universalis, for 5 years now the worst thing for me was when I lost my eyebrows and eyelashes. I can imagine how you feel, i'm a mother of 3 and my constant fear is my children getting alopecia. Ive started using these eyedrops called Lumighan, I just apply them with a cotton bud to the eyebrow and eyelids and my eyebrows and eyelashes have grown back, then fallen again, then grown back, and now they have fallen again, but im using the eyedrops and I can see small baby hairs appearing again. The drops are actually for glycoma patients and the side effects are eyelash growth. I'm not sure if it would be an appropriate treatment for a child, but might be worth it.
I wish you all the luck for the future.
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Comment by Kkerrylynn on May 29, 2014 at 6:03pm
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I am overwhelmed by the kind responses, and with everyone sharing their experiences. Thank you so much, it all helps.
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Comment by Debbi Fuller on May 29, 2014 at 6:58pm
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Kerry, I LOVE what everyone has told you. Sybil really nailed it. I lost patches when I was a kid but it went away until I was 37! However, about 2 years before my head hair started to go, my eyelashes on the upper lid of my right eye fell out. They grew back and have stayed in for the last 25 years despite my having alopecia totalis/universalis (all I have is my eyelashes). How weird is that?? From your description of the autoimmune diseases in your family, I agree with you that this looks pretty inevitable. Your job now is to make sure that she continues to be happy, fun-loving, confident and secure in herself. Don't push a wig. If she decides when she is older that she wants one, fine. As you've read above, most little kids don't really care. You can protect her from bullies by making sure that her school is aware of everything. Contact NAAF and CAP for help in ways to cope with school etc. Don't cry and go nuts in her presence as this might communicate itself to her. Just treat her totally normally and love her as she is. Treatments will stress her out and make her feel that she is 'sick' and we know that there is currently no 'cure' for AA. It might never happen. Try to chill and just enjoy her and your life.
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Comment by Ava'sMomma on May 29, 2014 at 7:00pm
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Kerry, I can definitely relate. My daughter has AU. She is going to be 5 in July. She was diagnosed right after her 3rd birthday and lost all of the hair on her scalp in about 9 months. Then went the eyebrows and eyelashes. It's been a tough journey and still can be at times but we stay connected to a bunch of amazing support groups. Stay strong! Find me on fb if you'd like to chat! Michelle Herbst
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Comment by Jess (Jordyn's Mom) on May 29, 2014 at 7:29pm
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Kerry,
I too am a parent of a child with alopecia...Jordyn's started at age 3 and progressed to totalis then to universalis...I too am in healthcare and practically diagnosed my daughter myself after I was told by her dr when I found her spot under her hairline that it was ringworm...I know what ringworm looks like and it no way was it....she went too the dermatologist and was diagnosed with alopecia Areata that turned into other forms...she had lost everything all body hair...I too cried night after night asking myself what I had done to cause this too my baby...then we went to see a pediatric specialist at Johns Hopkins in Baltimore and it was confirmed also by him...they offered injections I refused...they offered meds I also refused...my daughter is bi-racial ( black and white) she too had asthma and eczema and has since grown out of those...she had full blown alopecia up until about a yr and half ago when she decided herself she was 12 then and she got injections...she already had some regrowth but like other times she knew it would disappear again so she wanted to try then (her decision) after 2 rounds she quit...not sure what happened but she started her menses had them 1 month and hasn't had it again...she is now 13 and im elated to say she has a full head of beautiful curls and her hairline is back...which is rare for her having lost everything....but she knows that she will always have the chance that her alopecia will return and she is prepared for that...I have always been honest with her about her alopecia and she at 6 stood in front of her school and gave a presentation about her alopecia....my case in point is never underestimate or lie to her aboutcould possibly happen...inform inform inform her of it all...also please look at her nail beds and checking for pitting...pin pricks my daughter had them when her alopecia was active...I have since noticed her nails are also smooth again...kids are cruel but we found that once they were informed of what she had it lessened a lot of stuff and teasing at school....kids are resilient she may understand more than u think...it is more devastating for a girl..not that its not for a boy...keep your head up mom she will need you to be strong for her...if u need anyone to talk to please feel free to email me at fatcat3689@yahoo.com im always here to listen and be an ear to cry on...from one mom to another
jess
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Hi Kerry,
I was diagnosed with fibrosing alopecia about 3 years ago. I have lost my eyebrows and I wanted to share with you a website, head covers.com
They sell real hair glue on replacement eyebrows. They are unbelievably real looking. I am a hair stylist and see many clients extremely close up and they are floored if I share with them my story. They Can't tell even when checking it out up close.
So, I don't have a solution for your daughters alopecia but until you find one she may feel better wearing these.
Hope I helped.
Debbie
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Comment by Dorothy on May 29, 2014 at 8:44pm
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I will only say she will take her clues from you, if you are showing her all sorts of frantic concern, she will not accept this condition or feel good about herself. What ever the outcome is, if this is a fleeting moment in her life, or a permanent situation, you goal is to make her feel beautiful, please do not be frantic and crying in front of her. Let your heart break in private, away from her, otherwise I fear she will reflect feeling bad about herself.
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I so feel for you Kerry! The only thing worse than dealing with this craziness myself I imagine to be watching my young vibrant child with it. At 50+ myself and new to all of the inconsistencies of life with alopecia some days are more difficult than others, this is not an easy journey at all! Mine started last summer with my eyebrows..... I didn't think much of the lost brows at the time, just tried & tried any and all brow cosmetics I could, but alas a little of summer's warmth and my handiwork was lost. Then this past January the patches started on my head but only mildly, so I remain hanging on!!! I too have decided to just take what comes and not to go down the rabbit hole in search of perceived cured. I did however find an aid as far as eyebrows from QVC. It Cosmetics has a brow perfect or auto 5 in 1 gel, that has been working for me. It actually stays put and needs to removed fully with a makeup remover. I tried it thru QVC because if it doesn't work for you within 30 days you can return it for a full refund. Perhaps it could be an aid, or FUN with makeup for your daughter just because, as sometimes people can be so cruel! I wish you & she the best of luck, as that IS most of what this seems to be! Surely your daughters attitude and future will only go on to be a stronger woman than yourself, the woman who will show her and guide her through this speed bump of life......All the best
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Comment by Angie, Gracie's mom on May 30, 2014 at 12:40am
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I related to a lot of your post. I have a 6 year old daughter who has AA. It goes from no loss for 18-24 mo, to a few spots, so a large amount of loss (the last time was mild, the time 2 years ago was 40% loss). She has no idea about this, and frankly with not knowing what will happen (she could have no loss for years), I am not inclined to worry her, which it will. As we've been through this, I'd love to share some of my learning. We did Protopic. It is messy, expensive, and seemingly did nothing. This last time we used Betamethasone and rogain. Probably lots will say there is "no cure," but this stopped the spots from spreading and stopped the little ones in their tracks. We used it for maybe 2 months. Another interesting thing, my daughter also has excema, but not when her aa is flaring. According to the nurse at the AA specialists office, that is common. I would strongly suggest you look at the connection of Ferritin and AA. Every time my daughters ferritin drops she loses hair, and the lower the level is correlated with more loss. I think unless you are a mom yourself of a daughter with AA it is hard to understand how incredibly difficult it is. Sure there are times where you just have to be strong, get over it, whatever, but I have found that I have a grief process over this and above all else a worry for the what and ifs of the future. Sure you don't want to freak out in front of your kids, but I'd like some folks to think of themselves in the situation of combing your Kindergarteners hair before school, which she already hates, during a hectic morning, only to discover fistfuls of hair coming out. Good luck and know there are others out there with flashlights and cameras poking around on their daughters while they sleep.
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I never heard of just the eyebrows being affected. I do have alopecia and occasionally my eyebrows get light or get a little bald spot. Generally I just pop into the dermatologist office and get some cortisone shots in the brow area and that works for me. They can be a little painful and might be kind of tough for a 5 year old to handle. Hope this was helpful. Good luck with everything. Tim
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