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 LindaSue on May 29, 2014 at 3:31pm
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Where do you live? There is a dermatologist in Santa Monica, CA that specializes in Alpoecia Areata. I lost all of my hair in January, maybe before but I didn't know it then. Prior to that, a friend of mine said, "you have no eyebrows!" I replied, "oh, I just forgot the make-up." Long story short, I was referred to Dr. Richard Strick who prescribed the DNCB treatment. It takes a bit of time to figure the right proportion but I do have hair growing back. Good luck.
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I forgot to add, I am using the solution on my eyebrows as well. Another question for you, was her scalp checked thoroughly by the dermatologist for any small bare patches of bare spots on her scalp?
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I'm not really sure what your question(s) are. I remember when I was a child I had alopecia areata pretty bad, but it was strictly on my scalp. Then it went away for like 20 years and then came back. When it came a second time, my eyebrows started falling out before most of my hair fell out. Only one eyebrow fell out. I don't think this is similar to a child's eyebrow loss though.
It seems you are more worried about it than your daughter is. I would recommend just doing what the doctors tell you to do. A lot of people on this board do not agree with the treatments doctors prescribe, but I had great success with a good derm. If she is happy and fine I think you should do your best to just make sure she is happy. Don't worry about what might happen as you lose a lot of the good time(s). You may be indirectly stressing her out and not know it.
The funny thing is that when I was a kid and had it bad I remember kids looking at me for like a second and then not caring one bit. My parents never made a big deal of it because I was a kid and they just wanted me to be happy. It seemed to actually affect my older brother more because we went to school together and he didn't like the way kids would look or talk about me. I could care less as (once again) I was just a kid. It's funny to look at old pictures of me smiling and laughing and my hair is really patchy. I had no idea what I had and didn't care.
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My AA started on my eybrows. I first lost 1/2 my eye brow on one eye.. the first bald spot on my scalp appeared 3 or so months later. And then I rapidly lost about a third of my hair. It was then I switched to a complete anti- inflammatory diet, when the condition started to reverse. After about 4 months of strict diet all my hair grew back. I have a lot of tacrolimus ointments left unopened. I'll be happy to send them to you if you think you need them. Just send me a message. But none of the ointments and steroids helped me. It was God's grace and the anti inflammatory diet.
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What is your email address? I will be happy to talk to you. My daughters started at age 5 with one eyebrow spot.
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Comment by Kkerrylynn on May 29, 2014 at 3:48pm
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My e-mail address is KLD623@aol.com :)
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Comment by Sybil on May 29, 2014 at 3:49pm
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Hi Kerrylynn,
I Do understand how scary and frustrating this can be and this may sound harsh but just stop and breathe.
I remember when my daughter started losing her hair when she was 2 1/2 and I completely freaked out. WHAT would people THINK? WHAT will SHE THINK? WHAT WILL HAPPEN?!?!?!
Then I said to myself...it is what it is and I can't do anything about it. She is healthy and if this is the worst thing that will ever happen to her, then we are blessed.
DO not let her see you upset or she will think something is wrong with her. Be supportive. Love her. Don't drag her from doctor to doctor trying to find a 'cure'. Unless she has an allergy or something else that is treatable, there is no 'cure'.
Yes people stare, yes some children have been rude and parents too, but we have also seen the other side. We have met some wonderful people, those who show concern and we explain, those who ask us if it's Alopecia and offer support. She has had many considerations, extra rides at Disney, meals paid for us anonymously, people have handed her little gifts, etc. We explain when we can, but usually just say thank you.
Now she has so many friends who don't see a bald child, she's just Olivia. We are very involved around town and nobody looks at her differently.
Don't let this 'ruin' your daughter's life. If her hair falls out, you can contact Hair Club for Kids when she turns six. She will receive a real hair wig for free. They will explain the program to you. My daughter wanted the wigs to play with but prefers to have her head without.
It is stressful but most important remember that she is healthy and this is just a 'thing'. Society wants hair but it is what it is. Don't make yourself crazy.
Contact me if you wish, and you can find me on facebook too
Sybil Schaffrath
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Comment by mary on May 29, 2014 at 3:49pm
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Hello Kerrylynn, I was your daughter at one time in my life, 50yrs ago. I do not mean to say that my course of this flippin illness will be hers, but if it is, the way you describe this happy-go-lucky confident little munchkin will make her journey much smoother. I wish my mom was still around to help you at this difficult time. I remember being taken to every physician, psychiatrist, and hairdresser in a tri-state area for potions and advice. I, being the little snot I was,(am) would joke about it, tell my parents to drag me up the stairs so it would look like I was being abused. (They REALLY appreciated that one...) What I am saying is this, take your lead from her. If she likes the sound of the words in her song, sing it with her! She most likely has an inclination that you love her and will do anything she needs. If she does not fear this illness, it will not be life shattering. I wish I could tell you this society is not cruel, it is. However, a strong and confident child/adult, can overcome most of what comes their way.Hopefully, her contact with this will end with her eyebrows. (I use Anastasia of Beverly Hills Brow Wiz, Sephora has it.) I will keep you both in my thoughts. And for the record, trust yourself as well. As mothers, we want to repair what is broken, sometimes it isn't broken, just different. I hope this helps and doesn't sound preachy to you. Mary
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Comment by Dena on May 29, 2014 at 3:52pm
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I have never heard of it being just the eyebrows, but it seems like it affects everyone differently. We noticed the first spot on my daughter head when she was 5. We seemed to be chasing spots all over her head for the next year as we tried different treatments. As soon as it would start growing another spot would show up somewhere else. At 6 she lost all hair. Eyelashes, eyebrows, body hair, etc... I was a total mess for about 2 years worrying about her. Luckily I have stressed more about it than has been necessary. She will be 8 next month and is doing great. She is still just as active and social as she has ever been. I think it was a bigger adjustment to me because I really noticed the stares and constant questions. Fortunately for my daughter it is normal for her. She is at such a young age she has grown up with people interested in her baldness. She enjoys telling people she has Alopecia Areata and explaining her condition. She loves it when an adult doesn't know what it is and she as a kids knows something they don't. I have made it a point to educate her so she can answer all the question she gets on a regular basis. As a parent it drives me crazy, but she seems to be fine with it. Maybe if my daughter was shy to begin with this would have been harder for her to adjust, but she just considers herself unique. She has never been one to hide behind wigs or hats, but prefers temporary tattoos on her head. Everyone is different, but I just wanted to let you know that there are kids out there living happy lives with Alopecia. Kids are sometimes a lot stronger than we are as parents. I wish you guys the best of luck.
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Thank you everyone for your thoughtful replies. I do not plan to go on an endless search for a cure, as i know there isn't one yet, and doing so would only make her feel that is what HAS to be done in order for her to be happy. I want her to be confident and accepting of who she is, and love who she is. With or without her hair. I am slowly coming to terms with this, our 2nd dermatologist appointment was only yesterday. The first dermatologist prescribed a steroid, the 2nd prescribed Protopic, neither of which are covered by my insurance. I have decided we probably will not seek treatment, and will just allow AA to take whatever course it may take. I just need to build my strength, and try to "just breathe" like many people have recommended...she has not seen me cry. The fear of the unknown is just very hard to push aside...
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