Alopecia World
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My daughter
Replies to This Discussion
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Permalink Reply by Sophie2000 on
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Hi, I'm 14 so I don't know how it feels from a parent point of view, but going through this myself I can try and help. When mine first started falling out I tried to ignore it. I have to admit it knocks your confidence so much. But what I done when it started getting worse and worse I decided to shave it off. The only time I would shave it is if there is no other way in hiding it, that is if she is hiding it. If you do decide to shave it, descuss with her how she would feel about getting a wig or if she wants to walk around bald. You can go to the dermatologist and they can send you some shops which sell wigs close to you. They are expensive, but you get money off through NHS. But you can get wigs from different websites online which are twice as good and half the price. I can't remeber the website I use but it's kings wigs I think. Anyway discuss with your daughter what she will feel comfortable in doing, because what I found is my mam made all the decisions for me and I didn't was to do it. So have a chat with her in what she wants to do first. Sorry if this is no help. But goodluck zz
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Permalink Reply by Felicia on
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Has anyone used Hair Club for kids or wigs for kids? I'm wanting to know how they are. And compare the two places
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Permalink Reply by Lori-akaMimi on
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Hi, Felicia! We contacted Wigs for Kids, and they were great. All they ask for is a note from your doctor, stating the diagnosis. Unfortunately, they had a long waiting list & we would also have needed a salon with a wig stylist to 1) take the measurements, and then 2) cut & style the wig after we got it. We had a hard time finding one locally. We went to the Hair Club and got a lovely, custom, human "hair system" (their term) for my 6 year old granddaughter. The whole staff was super nice. It took about 3 months to get. They will give you 2 wigs per year, through your child's 18 birthday. Plus, 4 stylings per year (I think it's 4). Just be aware that these hair pieces must be used with glue or tape. They are not full caps, per se. They only use the glue on children 10 & up (if I'm remembering correctly). The glue & the tape they use last 4-6 weeks & both require a solvent to remove. You can find tape online that is for 1 day use. As it turns out, my little one wants absolutely no part of the wig - which is just fine with us! You may also want to look into freewigsforkids.org and childrenwithhairloss.us Hope this info helps...
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Permalink Reply by David S on
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I would start with asking your daughter what she wants to do, even more so than what you want her to do. I wore a wig as a teen after going through hell in grade school. It was the 70's, but kids can just be mean no matter what decade it is.
I started wearing a wig in 6th grade, but everyone knew..and although it was better, it added a different kind of stress.
I'm a parnet now of two kids. Thankfully neither one has alopecia. If they did though, I would try my hardest to insure that they were doing what they wanted to do...and not what I necessarily wanted them to do. The best thing for her is to know that you are there for her and love her no matter what decisions she may make regarding her hair.Obviously, you're the parent and have final say about certain things in her life, but I think with this...she may feel better about things if she has an equal say in how she lives her life. Even at a young age. Things you do and say have an effect on her. Trust me, she hears everything. Things that are said may have different meanings to her at her age. Talk with her. Even if you over-ride her decisions...give her a voice.
Just one parents view...that was diagnosed with alopecia at age three.
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I totally agree with everything you've said, David. A positive attitude - plus lots of support, encouragement, confidence boosting & love - from the adults in your child's life will have a huge impact on how he/she deals with this.
After much research, her parents decided not to go with any treatment, because of her age.
As for shaving, wigs, head covers, etc: follow her lead. Here's what we did: I talked to my 6 y.o. granddaughter about what the options were (saying, "Some people with Alopecia wear wigs, some wear hats or scarves, and some choose to not cover-up at all. Most importantly, there is no right or wrong! It's a personal choice, whatever YOU'RE comfortable with"). I showed her pictures of other people with Alopecia, including children (from this website), to show her she was not alone in this.
At one point, my Babygirl started talking about maybe wanting a wig. She wavered back & forth. We went ahead with Hair Club, figuring if one morning she decides she wants or needs a wig, it'll be there for her. The instant it was put on her for the styling, she said, "Nope. I don't want it." And, hasn't worn it once (and that's perfectly ok).
When she was left with nothing but a few strands of hair, she just kept saying, "I wish it would just ALL fall out! I wish it was gone!" I told her she was allowed to shave it, if she ever wanted to - just let me know. She thought about it for a week or so. She was the one who decided to shave her head. She loved it! (and, to be honest, it did look much better than the random, straggly hair she had left)
She chooses not wear a wig - or anything else, for that matter. And, that's just fine! I made it clear that the only time she HAS to wear a hat is when it's very cold, or when she's out in the summer sun.
This is just our story. Your daughter may feel very differently. My advice is to talk with her about everything - what she's going through, how she feels, what she wants. Allow her to make her own choices - and give her your full support.
Know that you have friends here on AlopeciaWorld... :-)
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Permalink Reply by Shannon M on
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Hi Felicia,
I'm 18, and I lost my hair when I was 11, and I remember what it was like for me. When the bald spots started getting bigger and bigger, my mom took me to the dermatologist (who frankly was an idiot) and he tried to diagnose me with a depression disorder, saying that I was pulling my own hair out. After a long battle to get a correct diagnosis, my hair was down to one single strand on the back of my head, and I had already gone to synthetic wigs. I remember how stressful it was to try and pick between the different options for treatments, but I also remember turning down the injections because the doctor told me that it only worked for small spots and was very painful. If your daughter has gotten to the point where she can't take the injections any more, I would say that it's not worth it. I ended up shaving my head to get rid of the last strand, and I went to wigs full time.
Growing up and going through puberty with no hair is very difficult, but a wig helped me a lot. Once my mom and I got more accustomed to wigs and the best ones for me, the wig allowed (and still allows) me to go out in public and not have to worry about people's opinions of me. I've always been active, and I played on all the teams in middle school and on basketball and softball all throughout highschool. I found that I was very hard on wigs that just had netting for the base, and that synthetic didn't stay on right for me to play sports. I have to say that the vacuum wig was probably the best option overall, and gave me back the normality that I craved all throughout middle school, and that Freedom Hair was the best provider of said wigs. They are expensive, but they last a lot longer than any other wig out there and they function as close to normal hair as you can get with a wig. I've had the same wig for almost three years now, and they recommend sending them in once a year to get repaired, but I only had to send mine in last summer after two years with it.
I know how hard it is for the kids losing their hair, but I also saw my mom struggle through the same pain you're going through. I don't know how many times my mom said that she wish she could trade places with me. I would just suggest talking through each and every option with your kiddo and seeing what she wants to do.
I've had my fair share of stares and rumors, of guys who acted like I was a freak, or the ones who were overly nice to me because they thought I had cancer, but I've also found the best people around. I have friends who aren't embarrassed to be seen with me without my wig, and who aren't afraid to ask questions, and I've also had one guy I told stop for a minute, stare at me, and then go "You can change your hair whenever you want?! That's awesome!". There will always be jerks out there, but I've found that for every jerk, there's two that frankly don't care because it shouldn't matter, and one more that thinks it's just the coolest thing. I would say the biggest thing is to just make sure your daughter knows she's beautiful with or without hair, and that the way she perceives herself should not be reliant upon her hair. It's about what makes her feel comfortable with herself.
Sorry about this long rant, but I hoped that my experience might give a little insight. I wish y'all all the luck possible, and give your daughter a hug for me? One girl who's been there to another.
-Shay
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