Comment by Cheryl, Co-founder on March 17, 2008 at 3:10pm

Hi Miranda,

I lost my hair at 26, I can not even begin to imagine what it would be like to be in your situation.

But I do feel this. I really do not think there is a mother on earth who would know exactly how to handle this and to be honest I have had alopecia for over 17 years and I don't know if I would have handled it too much differently either.

For sure it is unfair that a child that young has to handle such a thing.

I think you are right in not throwing out the wig, perhaps just "self" it for awhile and see if she changes her mind later on down the road. I have not worn wigs in year, but the last one that I bought I wore once and never again, but for some reason or another I kept it in a box.

Miranda, without a doubt I know you love your daughter and will act according to that love. I already see you asking if you handled it correctly and how could you handle it differently and you will find out the best way to care for her needs. Please continue to reach out to other parents with alopecia and the most I can tell you is that I have seen SO many girls and boys turn into strong young men and women with alopecia and I see no reason why your daughter will not be one of them.

Cheryl (hugs)

Comment by kastababy on March 17, 2008 at 7:51pm

Hi Miranda!

Perhaps you would like to talk to my mother. She would probably be able to advise you a lot better than I could, considering that of course, she is my mother and we have been living with my hair loss since I was your little girl's age. If you would be interested in talking to her, I'm sure she would be more than happy to help you. Send me a private message if you are interested, and I will call her and tell her to expect your phone call.

Comment by Orbit on March 19, 2008 at 5:55pm

Hi Miranda,
I'm sure my mom would be happy to speak with you as well. If you want to send me your email address I would be please to forward it to my mom. I know she probably went through alot of the same emotions that you've had.

As far as you daughter is concerned, she WILL get through this! I know that I am a much better person having grown up with AU, you discover wonderful things about yourself that you never knew. I know it sounds weird, but I think my AU at 8 years old was actually a blessing in disguise!

No matter how hard it is now - you will be thankful for this learning experience and someday you and your daughter will be able to pass along your wisdom to others. For me it made all the heartache and difficulty worth while.

Best wishes!!!!

Comment by Miranda on March 20, 2008 at 11:32am

Thanks everyone,

I am feeling much better and so is she.

Comment by Janna on March 21, 2008 at 1:45am

Miranda. I just wish I could give you a hug. I know what you're feeling, and I know how frustrated with the situation and with your sense of helplessness you are. And I know how it feels to have your heart break for your baby.

She'll let you know when she's ready to wear it. Lynnea is the same way with hers. She calls it her 'Cinderella hair". She loves to pet it, and look at it, but she wants nothing to do with having it on her head. I think it overwhelms her.
So we keep it for her, and when she asks for it, it will be there. I bought hair extensions, so that we could "put on our hair" together, which both my girls get a kick out of.

Please tell Della that she's the most beautiful little pixie I've ever seen.

Comment by Trina on March 23, 2008 at 12:27am

Miranda,

I know the issues you face. I have had AU since 15 and AA since 8. I will not tell you that it is not hard to deal with cause being a teenager and going though this was the best and worse thing that happened to me. She will definately be stronger for it. My daughter who will be 9 in June developed a patch about 3 months ago and it was the worst thing for me. She has always had long and thick hair and my worst fear came to life. She has been such a trooper and does not fear the spot. i have cried because as a parent we want to protect them. I brought her some natural supplements and some shampoo to help promote hair folicile growth. She has also been reacting to treatment and it is growing back in the spots. Since she does have some hair maybe extensions would have been a better idea to add to her hair. Wigs were never my thing. Wigs are uncomfortable and heavy and I need to be free. I make my own custom hair and bond it. I know that the hair is not coming back and could care less. But as a parent I understand because I dont want her to deal with this. I would give my right arm to have her just be a regular child.

Comment by Mommy on April 27, 2008 at 10:04pm

Miranda,

Don't be so hard on yourself. You are a great mom- the fact you agonize over your actions & words just proves it. Who is to say what the best thing to do is in situations like this? Luckily my daughter hasn't started asking many questions (but we have only been bald for 6 mths - areata for 1 year though). Although today she did tell me she wanted eyebrows. I already know I will not know the right thing to say when she starts with these questions. I can't give a good explanation for "why?" when I don't know myself. I also won't want to sound like there is no hope ( even though I struggle with feeling helpless about it). As for the wig, I have been thinking about the hip hats with hair. They are suppose to be cooler and more comfortable than a wig and can be synthetic or real hair. You might look at their website. http://www.hatswithhair.com/. Fellow mommy advice: Give yourself a break- beat yourself up only for a short while (if at all) and then move on. Trust me- as a parent you will have plenty more chances to feel "mommy guilt" for things you should or should not have done. P.S. Your daughter is very beautiful!

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