Alopecia World
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New member - 12-year-old daughter with AA
My daughter was diagnosed with AA a little bit ago. Since then she has become almost bald and now seems to be losing her eyebrows too. She doesn't want to talk about it and gets mad when I try to get her to express her feelings. I wanted to go to a local Alopecia event next weekend, but she says no way. I'm wondering if there's any kids out there who would maybe like a pen pal. Not sure if she'd be interested, but I'd like to try. She wants to be in denial but she is petrified of some things, like her wig falling off in school in PE. She says she has told her close friends and they are supportive, but she is afraid of other kids knowing.
The other thing is the few strands of hair she has left look so bizarre. I suggested she just shave it all off and it would look better, but she doesn't want to. I thought that way she can glue the wig on every day with double-sided tape and feel more secure, but she'd rather keep the bit she has. Of course it is up to her. I was thinking she could go bald as a fashion statement and say she did it on purpose.
Has anyone tried Rogaine for women? The doctor suggested it but I'm not sure it's safe for someone so young. Any success with it?
Thanks for any thoughts. I would do anything for it to be ME and not her. And my parents and sister all have different autoimmune diseases -- Crohn's, Sjogren's, and MS (my sister).
Replies to This Discussion
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Permalink Reply by Rose Marie' on
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Hello Sarah
My daughter was 12 years old when she was diagnosed with alopecia areata. I understand how you may be feeling and I want to do my best to try and help. My daughter is now 21 years old and still has alopecia areata....she does very well and even though there have been some major challenges through the years, I feel we have found ways and means to keep her fully empowered and happy.
The reactions of your daughter are all very understandable. She is frightened and out of control...she can't and you can't make this horrible condition go away and that is a lot to handle when you are 12...I'm sure it's pretty horrid for you as well. I feel the lack of control can be overwhelming when dealing with hairloss. If only we could control this we would all feel a lot happier. My advise to you is to keep talking...I know she's cross and annoyed and doesn't want to, but it is so very vital to keep those communications lines open.
There are choices to be made... at the moment she is making those choices for herself, she may feel she is totally handling this and you are being a pain. You and I know this isn't true, your life experience is telling you that you need to help her deal with this in a way that she feels empowered and strong. Her choices at the moment are around secrecy (and that's ok) as long as she fully understands the ramifications of 'the secret'. If she understands this and wants to keep doing what she is doing then all you can do is continue with the support and keep working to give her the tools to handle this condition.
Holding on to her hair is very normal...nobody wants to shave their heads for some it feels like giving up hope. For me and my daughter we did get to a place where she did and continues to shave her head. It was an empowering exercise for her and me. As she started to take control of the condition, rather than be at it's mercy.
With regards to treatments and medications. At this time there is no cure for alopecia. I would fully investigate any lotions or potions that you may like to try as some have side effects which are not helpful... some are very expensive with no results. Remember alopecia areata often goes into remission itself without medications or treatments. My daughter is a good example of this... she has grown her hair back 5 times in the last 10 years (she has also lost her hair five times). We have never used treatments of medications.
It is not unusual that other Autoimmune conditions are in your family. There does seem to be a genetic component with Alopecia Areata.
I will friend you (as I have my page set on private), so you can message me if you need any help.
I think you are a wonderful mum doing the investigations to help you and her. I also know this is very challenging but please trust me... you will both find your way.
Rosy
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Oh wow,this brings back so many feelings and emotions reading this. If you are in the states send me a private message and I will send you my contact info. My daughter lost alot of her hair her freshman year in highschool and then all of it her senior year. Steroids worked the first time for her and she kept it for 3 years. It didn't work the second. She knows now she was in denial. Your daughter needs to be able to get her wig secure. You will be her advocate and help her learn to cope. My daughter will reach out to her also. My daughter is a junior in college has alot of friends and has the typical boyfriend problems. Let me know how I can help.
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Thank you, Karen. We are in the Southern CA area. I wish I could find someone her age close by that she could meet. Right now she feels like she is the only one. I keep telling her that in a school of 2,500 kids, I doubt she is the only one with AA. I don't know if she'd be willing to talk to someone older about it. How did your daughter cope as a teen?
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It is a rare condition so there may not be anyone in her school with it. The first time my daughter had it she wore scarves tied as headbands and it sort of became her fashion statement. The second time it was just too drastic so she went into wigs the second week of the shedding before anyone noticed. I cried more than she did. She is a very strong person. She has a very sweet boyfriend at the time that was alot of support and help and her friends gathered around her.She continued to cheer and tumble with her wigs on.She is off in college sharing a bathroom with 3 other girls, has a boyfriend and plenty of friends. They all know and noone cares. I just want to encourage you that she will be able to live with this condition even though it is devastating.
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Permalink Reply by Me&myGirl_Aussie on
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Hi,
I am sure my daughter (who is a mature 9) would be happy to pen pal or email. We both have alopecia check out my page.
:)
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Permalink Reply by Deeann on
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Hi there. I am an adult with alopecia, but had my first experience with it when I was 7. I now have kids of my own (one girl who is 12, and a boy who is 8). First I will say that it is terrifying to always be worried about having your wig fall off. It's like your days are consumed by wondering who will know, who will purposefully knock it off, what the wind is doing...- With a daughter who is your daughter's age, I think it is so important for us to just remember what it was like being 12. They want to be like everyone else and not stand out, just like we did. When it's such a drastic difference, it's so...difficult. She is figuring things out as she goes, just like you are. Keep giving her options, and let her decide what she wants to do. I recommend getting involved in a support group, even if it's just for you. Maybe once you go, she'll get interested. When I was young there was nothing out there, and I'm so thankful there is something available almost everywhere. I would go on the NAAF website to see who your support group leader is in the area. Good luck. Let me know if I can help. One more thing - I would research the Rogaine recommendation. I haven't heard anything positive about it from people who have used it. Some of the ladies grew blonde facial hair, and the hair on their head disappeared as soon as they stopped doing it.
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