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How do you cope with your child's hair loss and pain?
My daughter, Lauren is 8 years old and has had alopecia since she was 5 years old. She has worn a wig since she was in second grade. Lauren copes fairly well and has some good friends. She has always wanted me to go into her classes at the beginning of the year and explain about her alopecia. She has always chosen to stay with me and be part of the discussion. We focused on AA and how the class could help and be part of the solution to Lauren's well being. She is a strong girl and cries rarely. My problem is me. She just started loosing her eyelashes(both her eyebrows and scalp hair are all gone). I have been crying for two days and can't stop. I do this in private. Lauren does not see me, though she knows I am sad right now about her eyelash loss. I thought I was handling things so well for the last couple of years and now I am not. How do you guys deal with this. I know it is not life threatening but I just feel so sad for Lauren.
Replies to This Discussion
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Permalink Reply by Maygensmom on
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Talk to her. Also know that there are options. You can actually order real hair eybrows. My daughter had AU when she was 3. Through a lot of prayer, her hair grew back. She has delt with AA since. She has always been limited on how she could wear her hair because of the spots. Now she is going through a battle with more hair loss than usual. The most empowering moment for me was when my daughter told me that she felt like her AA kept her humble. I realized that God knows what He is doing with each child. He is making them emotionally and mentally stronger. Pray, talk, and look for options. I remind myself that if Maygen looses her eyebrows we can tatoo some on or buy some, if her eyelashes fall out we tatoo eyeliner on or buy fake eyelashes. But I will only do those things if she suggest it. I am also working with her on stress mangagement. I know it is hard, but Alopecia World is so great because we all have each other to talk to and learn from.
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Permalink Reply by Nancy Schmelzer on
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You are right. We have options and it depends on what our children want. Thanks for your support. I really need it and so much appreciate it. Take care,
Nancy -
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Permalink Reply by Diane Hernandez on
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My daughter is 9. Last year she had two spots, which showed up in November and were growing back in by March. This October two spots showed up again, and things were proceeding much like last time (two spots, growing slowly). This week she got another spot and has a ring around the center of her head (from ear to ear) where she has diffused hair loss. She hasn't lost enough yet to notice, but it is coming. I've cried and cried for the past two days. What I'm mostly worried about is that she is a low self esteem kid anyway. She was diagnosed with generalized anxiety disorder when she was five. She has made remarkable progress, and I don't think would get the diagnosis if tested again. She has a few good friends, but none in her class. She is bright, but she doesn't have anything she really excells in and is still uncomfortable joining in. The hair loss is hard, but combining it with a kid who struggles (most of the time very successfully) to cope with day to day things . . . well it is hard.
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Diane, I am so sorry you and your family are going through all this. Lauren and I have our ups and downs. We have taken a very proactive approach-talking to the school every year and letting her class know what stage she is in, letting her tell the class what she wants and how much(Lauren is very open about it), and letting the kids know how they can help her has given everyone the support and education needed. We are also doing a education poster for the library through Brownies. We, both of us, still cry on and off. Lauren's eyelashes are slowly going- I am sad, but I am still trying so hard to see the positive that can be made from this(it is different for everyone) so I do know how hard it can be when different stages pop up. As a parent, we want life to be good for our children. And who are we to say it won't be. We need to give them support and help them stand up and be strong- through whatever means are out there. Hang in there and let me know how you two are doing.
Nancy -
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Permalink Reply by Kimberly on
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Hi Nancy,
I was searching for a AA network in Westerville & saw Lauren's picture. My daughter is 4, turns 5 at the end of March. We were recently diagnosed w/ AA, but turned to AT very quickly & hoping that some of the regrowth she's received keeps going, but is VERY slow. I would love to chat w/ you anytime about our stories and would love to have Kendall meet someone else going through a similar experience. She hasn't mentioned it, but know it must be tough for a kid to not look like the rest of her classmates. She's still a little young to make much more out of it...mostly it's the looks of empathy from adults or the questions about Chemo. We've noticed stares from other kids or some ask her questions, but she doesn't read much more into it. Lauren seems like a very stable, strong girl & that's what we're trying to instill w/ our daughter. We hope as she grows, she will continue to take charge of her life regardless of how much hair she has and not allow that to "make-up" who she is and will become.
Please let me know if you would welcome the opportunity to have our girls meet or us, Moms chat. -
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I would love to meet. I am very excited to hear you live in Westerville too! Lauren is very strong, funny and confident. She has taught me a lot about how to hold your head up and be strong. How do we go about meeting or talking on the phone?
Nancy -
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Permalink Reply by Kelly on
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I just came across this post. I am currently asking myself the same questions. How to cope with my sons hairloss. Im a little tired of hearing "its no big deal" from all my friends and family. The mean well, but I still feel sooooo sad for my son. The past 2 months we have been living in denial pretty much. I keep hoping I will look down and all of a sudden a new big batch of hair will be there. My son really doesnt seem to mind even with kids teasin about it at school. He has very very long hair...my lil hippy. He is missing it in the crown, and since he cant see the crown I dont think he really knows how bad it is. He can feel it just not see it. I do hope there are some meds we can try to help get the hair growing back....so for now denial is kinda working. Im sure this will be a rollarcoaster of feelings but today it's denial. I am so happy to have found this site.
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Kelly, Hang in there. I know it can be difficult. Lauren has no hair now and doesn't always want to wear her wig. So there she is running around with her little bald head. The thing is, she really doesn't care. So I learn to react and protect based on her feelings or emotions at the time. Basically, I let her call the shots on how to act and how to be there for her. I hope this helps. As far as the comments from family and friends- you are right they mean well. but I will tell you when I hear people respond that way, I just think -how do you know are you going through this? I guess it is not the best coping thought but I just wanted to share with you that it bugs me too. I just keep going and doing my best.....
Nancy -
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