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Permalink Reply by Amber on June 20, 2011 at 11:43am

Hi, with Alopecia you never know what route it will take. It's different for everyone. For me, I started losing it all at age three and it didn't come back until I was about 14ish and then now at 22 it's all gone again. I know a little girl who was also diagnosed at age three. She is now six and it has all come back and so far shows no sign of coming out again so there is hope. So regrowth without it falling out again is a possibility.

Some of the things my mom did to help me was to just encourage me. If ever I got upset, she would tell me that I have my family and my friends who love me just the way I am and it didn't matter what anyone else said. She always bought me cute hats to go with my outfits, and I mean had a LOT of cute hats! If your daughter is interested, there are also places that you can get free hair pieces for children. The one I know about is Locks of Love but I know there are others, too, I just don't know the names.

Take comfort in the fact that no matter what, hair or no hair, your daughter will still be able to live a full life and accomplish anything she wants to. I'm married to a wonderful man, I'm about to graduate from college, and I have a beautiful daughter and another little bean on the way. I'm telling you this because my mom has told me recently about some of the concerns she had when I was first diagnosed so I'm hoping that it may help you.

Good luck and just remember that showing your daughter that you love and care for her very much will help her through any trial in her life. :)

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Permalink Reply by Sophia on June 20, 2011 at 3:25pm

I'm sorry your daughter has to go through this. I was 2 years old when I started out with AA turned into AU shortly after that. Growing up with it was everything else but easy but honestly, it's "just" hair. That's the most important thing my parents taught me. It could be so much worse. I know this probably doesn't help much right now but just try to be supportive in every way possible. If she wants to wear a wig, get her a wig. If she wants to wear hats, get her cute hats. If she wants to go bald, then that be it. People will stare if she decides so just be prepared. Simply ignore them. You are probably worrying about her not having friends in school or a boyfriend later on but believe me... there are GREAT people out there that will love your daughter for who she is, not her hair.
Your daughter will be okay, hair or no hair. It may not always be easy for her but she will learn to live with it & have a happy, normal life. I'm married & have two beautiful boys, Alopecia is not who I am, it's just a part of my life that I have accepted over the years. So will your daughter :)
Hang in there!

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Permalink Reply by Alliegator on June 20, 2011 at 4:20pm

Welcome! You & your daughter are not alone. I agree with all that Sophia wrote. I think if you did a search for topics on AA, you will find several different stories. I think the best thing to do is be as supportive as you can be for her the rest of her life. Just like Sophia said, if she wants a wig or a hat or a scarf, let her try that out and see if she likes it. This will more than likely be an ongoing item for her but she will find a way to accept it over the years. There will be difficult times, but it will be okay. Just listen when she is upset about it. For me, it helped to have someone listen. You will just have to teach her how to ignore ignorant people because there are plenty of them out in the world. I have to remind myself to ignore them, and it is an ongoing process. Let her know that she is not alone, and she is beautiful with or without hair. My Mom always told me "it's just hair" and that I was being vain. For her, it was just hair, but for me it was more than that. Since your daughter is so young, you may be able to teach her it's just hair but she may not always agree with that. Just remember, there is light at the end of the tunnel. There will be people here to help you along the way!

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Permalink Reply by Jules1984 on June 20, 2011 at 6:31pm

Thanks for the welcome and all the replies. It meant alot to me to read them. I am really nervous on how this is going to affect her in the long run and it's constantly on my mind. Every day I search for more hair loss and it devastes me when I see it. She is 3 years old and has a 2 year old sister and I'm not pregnant and due in August with her baby brother. It's been a stressful 2 months and being pregnant doesn't help it. I'm worried that because she developed this condition that maybe her sister and her brother will aswell... I just find it so weird that it doesn't run on either side of the family... we have never even heard of it. My husband and I have a big family who love her and support her in everything... so I'm sure she will be good in that regard. I just can't help but think what would be going through her little head. I just feel like pulling the hair out my head and attaching it somehow to hers. I would do anything to give her my hair so she doesn't have to go through it. She loves her hair... she was born with so much hair... all over her body (little peachfuzz). Her hair is so long and gorgeous and she just loves to brush it and put ponytails on... she's just a little girl... ugghhhh why does this have to happen to her! Ok... now I'm venting... I really didn't want this to turn into a vent, but it did and I apologize. Thanks alot for your support ladies... :)

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Permalink Reply by Amber on June 21, 2011 at 12:32am

It's okay, vent away. Sometimes that's what you need to make you feel better. She can still do her baby doll's hair or even help out with doing her sister's hair. And I know what you mean about no one in the family having Alopecia and just one, your daughter, ends up getting it. I wouldn't be too concerned with your other children getting it. I also have a huge extended family and am the only one with Alopecia. I have five sisters, all of which have gorgeous hair so try to put your mind at ease. I know that's easier said than done, trust me. I sometimes worry about my own children having Alopecia but I figure they more than likely won't and even if they do, they'll have me to relate to and talk to. :)

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Permalink Reply by Dielle on June 20, 2011 at 11:19pm

I lost all of my hair at the age of 3 as well, and it all grew back so that is a definite possibility for your daughter. It did completely fall out again at the age of 12 and I'm now 20 and still without hair. It's really unpredictable which is a part of what makes it such a scary emotional rollercoaster. The best advice that I can give you after having gone through this in the rough teenage years is to just give her complete support in whatever decisions she wants to make. Regardless of whether she wants to wear a hat, a wig, or just go bald you don't want to make a big deal out of it or try to change her mind because that can lead to a lot second guessing and insecurity. If she still has hairloss as she gets older let her know as soon as she is old enough to really understand that she can tell you anything and that if anybody is teasing her or making her uncomfortable to tell you. I was teased unmercifully all through middleschool and my mum only learned of it two years ago because I was internalizing everything and putting on a happy face so nobody guessed what was really going on. So an open dialogue is REALLY important. honestly thats all you can do. If you just keep on loving her and supporting her and talking to her she'll find her way. It's something that I still struggle with, but one thing I can say is that going through everything I did made me the kind of person that has a great amount of empathy and sympathy for other people that are struggling with something so there are some positives to come out of the horribleness. I wish you guys the best...and one thing you need to remember is that it is totally okay to vent because kids are cruel at times and adults can be really stupid about it and you are going to want to murder them for it (or so my mum tells me). It's not healthy for you or your daughter to keep it all in...trust me on that one (had a breakdown in 9th grade), the important thing is to not let yourself wallow in it for too long. A good cry goes a looooooooong way! Just keep being the awesome mum you sound like you are.

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Permalink Reply by Jules1984 on June 21, 2011 at 7:01am

Sometimes I really need to vent :) Thanks for allowing me to do so here! I forgot to mention that her AA developed 3 days after she started with the gastro virus. This virus really hit her hard.. she was throwing up for 2 days, fevers for 6 days, and diarrhea for 3 days afterwards. And to top it off... she caught a cold a week after she finished with the virus. I'm just wondering how many people developed it after a severe case of the flu? And also... I'm wondering that because the flu is gone what does that mean for her AA? I have so many questions that probably can't ever be answered...

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Permalink Reply by cindy Babs on June 21, 2011 at 11:52am

hi jules. i am sure those well meant reassuring messages are some comfort to you. i still need it and it's been 2 yrs. there is so much sincere support on here as i am sure you are realizing. it will get better.
i am the mother of a daughter that lost all her hair the week of her 15th birthday during final exams. i cannot explain here what we went through. trauma beyond words. she is finishing her jr year and she has moved on. her mother....getting better but it's still difficult for me.
my point is that i believe acceptance is much harder on the parent. honestly, i think your daughter will be just fine. yes. there will be hard stages but that is a normal part of growing up. she will come out stronger.
hang in there. she's beautiful with and without hair. i doubt she worries about it even half as much as you (especially since she is only 3).
thinking of you as i have been there and still am.
p.s. this is the place to vent. it helps so much!!!!!! bring it on :)

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Permalink Reply by Jennifer on June 21, 2011 at 3:51pm

i've had AA since i was 5, and now have totalis. we were always very open about it. in 1st grade my teacher stood me in front of the class and told all the kids what i had and explained to them that nothing was wrong with me. i never really had any issues with kids making fun or being mean to me. I think kids might be mean because it might be different and scary to them, but in my experience being open and honest and just letting everyone know about it has been a wonderful experience. ive never been embarrased about it, and everyone that i know, knows i have it. good luck! shes very adorable with and without hair! :)

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Permalink Reply by Rose Marie' on June 22, 2011 at 2:48am

Hi

I am a mother of a daughter with alopecia areata as well. My daughter lost her hair when she was 12 years old, she is now 20.

At every age I believe different challenges come with this disease. As a mum it can be daunting but I want to reassure you that you will find your way and you will be able to support and help your daughter.

Because your daughter is so little you will be the communicator and investigator. I believe honesty and education are the best help. Secrets etc. don't work so well.

You are obviously a very proactive person, so I'm sure you are already doing a great job, but if you need any support or help just pop in and say hi.


Hugs

Rosy

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Permalink Reply by Jules1984 on June 22, 2011 at 6:13am

Thank you all for your support! It really is easier when there is someone out there to talk to about all this. Has anyone ever tried seeing a naturopathic doctor about their AA? We made an appointment for Tuesday to see one... we have seen anyone we think can help and I just hope that maybe he can shed some more light on what's happening.

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Permalink Reply by EB Dj on June 23, 2011 at 11:19am

Hi, we are seing a Naturapath and a Homeopath for my daughter. They have advised some diet changes and homeopathy that we're trying for the last 6 months. I haven't seen much change yet, she grows in hair on some spots, and looses on the other. She still has 90percent loss. Not to discourage you, though... And I'm not discouraged either. I believe that there is something that's bothering her immune system and we need to turn it off which need some time.
I totally understand how you feel as I've gone through this 8 months ago. I was in a hell worrying so much for her. Finally I come to the realization that I can do what I can do - going to the doctors, starting treatments- and then start building her confidence by enjoying the moments with her. You'll get there, you just need some time. And just keep in mind kids pick on from their parents. The mire she sees you worrying about her hair, the mire she thinks that theres something wrong with her. Hang in there and enjoy your beautiful daughter.

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