Replies to This Discussion

Permalink Reply by E&C Mommy on March 28, 2012 at 6:12pm

Hi Stacey--

My son was diagnosed by our pediatrician last week, and confirmed by the dermatologist this week. Both are acting like it's not a big deal at all, and have assured me that most (and I stress "most") cases of it are minor. I did some investigating with both sides of our family, and found out that my mother-in-law (who is now deceased) had a small episode with it that resolved itself. The craziest thing is that his patch showed up just days after the anniversary of her death. I'm not sure why it made me feel better, but it did. I am, of course, still concerned, but hopeful that it won't ever become a huge issue for us. We're using a topical steroid and will just have to wait and see. I'm sending happy hair vibes to your daughter. :-)

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Permalink Reply by Janice on March 29, 2012 at 12:35pm

Hi Stacey.......... My Daughter was dignosed with this at 2. She is now almost 5. She still has the majority of her hair. I use Nature's Aid creme on her spots. Right now she has about 6 or 7 spots.It will usually grow back in about half the time 1 1/2 to 2 months. We are in the wait and see stage. Our Doctor said she could grow out of it in 5 years, so we are waiting to see what happens. She goes back to her Dr. in June and I am going to be requesting allery tests then. Thyroid runs in my family. My daughter has excema(sp)
I know how you feel. We were told this is what she has and basically live with it. I was so glad to find out about Alopecia world so that there was other people to talk to. You are not alone in this. I keep telling my daughter how beautiful she is -inside and out!! She has no idea that she has this. I am the one that worries about it not her. She does have to go to school in the fall. So as long as I can hide the spots- my daughter will not know about it. Until I have to tell her- I am keeping it from her. She has enough to get used to with Kindergarten starting then to have to worry about this. I hope that it will go away- but am preparing myself that it may not. Please contact me -if you would like to talk more. I hate that there are other young children with this- but I feel more at peace with it that there is someone else out there that knows how I feel.

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Permalink Reply by Storm_Uchiha on March 30, 2012 at 7:13am

Alright...As someone who is around the kids ages who did get diagnosed with it at four/five I'd like to give some advice.

Stressing about it, is just a bad idea. It will infact bounce off your kids and any kid with AA actually is probably better off. Aggressive immune system = most likely means will likely if she does fall ill with a cold or something it will go away in a shorter amount of time because of it. I've had nearly all childhood illnesses and whilst some came fighting my Alopecia is what kept me out of the hospital when I had bronchitis and an ear infection, kept me out of the hospital when I had pnumonia and more.

Kids with Alopecia....It depends on the upbringing. I know I turned out stronger because of my parents and family standing behind me 100% and not worrying about how it will effect me. When kids bullied me my mom told me the right come backs and to not respond with violence unless they put their hands on me first.

To Janice - Please don't keep your daughter in the dark about her condition...That will only make it worse hiding her spots may make her wonder why your fussing so much over her hair.

To try to makea a long explanation from becoming another paragraph...

My hair fell out in chunks, I am 99.9 percent bald except for my eyelashes. These kids could grow out of it. I spoke to a woman once who recognized my condition who said her Alopecia disappeared after giving birth. I know this isn't the case in all cases but I'm just saying...I just wanna try to help having been there at that age and wondering if I did something wrong or if my cousins thought it was a funny joke.

I didn't understand for months why I lost my hair...Finally when the results came back my parents sat me down and told me. I sobbed I wept and I wished that it had befallen my bully of an older cousin at the time instead of me.

But I would have turned out a lot worse then I have....My parents and I have good relationships and if someone in my family is complaining about their hair it's always a running gag that I jump in and say: "Hey...At least you don't need sunscreen on your head at the beach." Or something like that.

Just stand behind them, make sure they understand and when they start school explain to the other kids that they can't catch it and that they aren't boys...

Trust me I've run into some real ignorant kids who refused to believe what I was saying but unless they put their hands on me I walked away. And rarly if ever did I get into a psychical confrontation.

Just saying my peace not trying to tell you guys how to raise your kids...Just speaking as a kid with Alopecia who's had this since I was four years old...It hit almost immedietly after my birthday.

Edit: I'm sorry if I offended anyone by accident it's just hard to get used to talking about it when I rarly bring it up...And that it may help their strength in the long run as an invidual to not be thought of as a sick kid instead as a strong and healthy person.

No one has wound up hospitalized from it. So why stress?

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Permalink Reply by Janice on March 30, 2012 at 10:06am

My daughter has 95% of her hair. She has long curly hair. To look at her(my profile pic is Jenna) you would never know she had it!! If it gets worse- I will definitely sit her down and tell her about it! My family and friends love her for HER- not her hair. I will be beside her every step of the way through this.I do not feel that I am doing any harm to her. She is a very girly girl. She loves playing hair dresser, dress clothes etc. So she would be wearing headbands, flowers etc, anyway- even if she did not have it.
I have found that after her being Diagnosed with it- we have been left to just live with it. I live on a tiny Island in Canada. Not too many people live near me that have this. I know she will not die from it. If it was not for the internet- I would not really know alot about it.I was given some information from her Doctor. I am glad she does not have any other diseases that would take her from me. I would move heaven and earth for either of my children............... A Parent can only do what they think is best.

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Permalink Reply by Storm_Uchiha on March 30, 2012 at 9:11pm

The thing is that's all you can really do...Be there for her, make her as strong as she can.

And I had long curly hair myself...I'm not sure if it will get worse but if it is Alopecia Areata....It's unpredictable.

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Permalink Reply by Storm_Uchiha on April 5, 2012 at 4:00pm

I know I've already said my peace...But when I spoke to my mom about this thread she told me this...Keeping to your daughter in the dark about her condition and trying to hide it isn't beneficial to her...It could hurt your relationship later on. I know you say you can only do what you think is best but telling her what she has would be the best thing you can do for her...It's just a bad idea to keep her in the dark about it. I was told right out when I was diagnosed and I cried, I wished it upon someone else but I grew up...I'm just speaking from my own experiences as a child...My mother and I are close I come to her about everything...If she had tried to hide my Alopecia when my hair had started to fall out I would have never trusted her again...

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Permalink Reply by E&C Mommy on April 5, 2012 at 5:59pm

I'm not sure what is going to happen with my 2 1/2 year old's AA (right now it is one small, barely noticeable spot), but I do agree that it is important to always be upfront. Obviously, my little guy isn't affected right now and could care less, but if his condition progresses, we will definitely need to explain it to him and will always be completely upfront. I found this article that, I believe, gives a lot of good advice on how to approach this as a parent:

http://minicolumn.org/alopecia/AlopeciaFAQ-3.html

The religious angle may not be for everyone, but the underlying message is a good one. I also always want my child to feel as if he is in charge of whether or not he wants to try different treatments, whether he wants to wear a hat or not wear one, etc. Yes, I'm getting ahead of myself, but I feel it is important to prepare myself to be a good/supportive parent should his condition worsen.

The great news is that our hair doesn't define who we are (well, perhaps there are a few exceptions with Farrah Fawcett, Elvis, etc.). I mean, really, have you ever heard a eulogy where the speaker only talks about how superficially attractive someone was and what great hair they had? LOL. That would sure be weird if that were the case. It truly is about how we treat people, what we do in this life, and what is in our hearts that matter.

I'm not diminishing how painful this experience is and can be...I know how cruel the world can be and my heart goes out to anyone who has to deal with this. Reading through the stories on this site just makes me realize that so many Alopecians have blossomed into the amazing people they are today BECAUSE of everything they've had to deal with. And, as parents, we can use this opportunity to learn from our little ones and provide a loving and safe place for our kids....whether they have a full head of hair, a patchy head of hair, or no hair at all. :-)

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Permalink Reply by Melly_Matrix on March 30, 2012 at 10:32am

I lost my hair at 4 and honestly you sound a lot like my mother who tried her best to prevent me from losing all my hair and did whatever she could to get it back. One thing I wish she had did, which im suggesting to you - show NO FEAR - please for your daughter sake do not let her fear at all because that is the one thing that held me back and drove me into depression not the disease itself. Sure alopecia is unpredictable and socially horrifying but it's not the worst that could happen and it won't stop her from doing anything she sets her mind too like theater or sports etc. She has to know in her heart and her mind that the disease does not stop her or slow her down so please push her to embrace who she is and to not hide from it one bit..

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Permalink Reply by stacey on March 30, 2012 at 10:51am

It has been 3 months since my daughter was diagnosed and she still only has the 2 small spots. I have stopped the steroids and i know just do the herbal tratments. I have come to accept it much better now and whatever will be will be. My daughter is very very outgoing and makes frineds very easy I am going to try and just make her the most confident person with or without hair if she ends up with a bad scenerio then she will be stronger for it and more sensitive to other kids feelings and if she ends up recovering it would have taught both of us a lesson me to appreciate the small things and live day to day and her even though she is too young to understand I will always teach her the importance that it does not matter what you lok like on the outside it is the inside that matters.

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Permalink Reply by Emily Horsley on April 5, 2012 at 9:37am

I had alopecia as a child, always a few coin sized patches, I was 21 when I lost all my head hair. The whole experience of Doctors and experimental treatments were horrible and never worked anyway. I wished my mum's time had been spent helping me accept the condition rather than try to cure it. Having it described as an illness made me embarrassed and want to hide it. Younger children are the most resilient and accepting of all humans and by explaining things to your daughter now and letting her know she's beautiful no matter what happens to her hair will help her to grow up confident in herself and ready to take on the bigger challenges life will throw her way.
All the best on your journey, stay strong xxx

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Permalink Reply by Me&myGirl_Aussie on June 19, 2012 at 10:35pm

I believe positive outcomes come from the positivity within!!

I have had alopecia since I was 12, and now in the last 3 months my daughter who is 8 has just lost all her hair (just like mum). I am so proud of her, she has taken it on board..... every show and tell at school she takes something into class about alopecia. She had diversity day this week at school (which children learn about acepting other peoples differences and disabilities) My daughter got up (unknown to me) in front of the whole year 3 and 4 classes and told them that she wears a wig every day. She has accepted this condition and talks openly about it with her school friends and my adult friends.

For yourself, hold your head high which ever way it turns, and find out as much information you can....knowlege is the key,..... and lots of love and support.... something to remember is that it is cosmetic, and she will still be the same child to adult she was meant to be.... I wish your daughter all the best.x

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Permalink Reply by Vesselsong on July 7, 2012 at 8:18pm

This week I have been praying for children suffering with Alopecia. Be encouraged! Keep looking up!

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