I need advice please :D

Hi all,

My 7 year old developed hair loss on 24th December 2010. I did not have the heart to ruin her christmas so asked if she was being bullied and her hair pulled out on boxing day. We managed to get her into the doctors 27th December 2010 and given some cream that made her hair matted. She was finally diagnosed with Alopecia and was asked to return in 4 weeks once the steriod cream started traking effect. It never took effect and when we returned four weeks later she had developed another patch (which the doctor kindly pointed out to my daughter!!!!!!!) my daughter (Caitlyn) ended up regressing and becoming reclusive and by the Sunday I had bought her a HEllo Kitty bandana. In school on the Monday the Head teacher (who already knew she had Alopecia for over a month) pointed out in the schools morning assembly that it was not correct headwear for her school as it was white with small Hello Kitty prints on. Caitlyn became an object of bullying and I really felt for her. I told her they are just jealous because they are not as beautiful as you. When her hair started growing back in April 2011 she was discharged at her first appointment with the dermatologist. Within 2 weeks she had a white patch on her forehead (which was diagnosed today as Piebaldism) and I was advised to plaster her white skin patch (on her forehead and under her hair where the Alopecia was) in sun screen. Caitlyn was told by the doctor that since her hair has not started to change colour from white to blonde (before her Alopecia) that it will possibly stay like that for the rest of her life.

Any ideas how I can explain this to a seven year old without breaking her heart like the insensitive doctors?

Any help will be appreciated.

Vic

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Permalink Reply by Evelyn (Amanda's Mom) on June 28, 2011 at 1:16am
Hi Vic, my daughter Amanda was 6 when she got her first 2 spots. i know exactly what your are going thru. You can start by going to: National Alopecia Areata Foundation.com there you will find lots of advice as well as lots of people who can help. We just attended the annual 2011 NAAF Conference here in Los Angeles this weekend. It was a great experiance for our family. We met lots of people who are on the same journey that you and little Caitlyn are on. They have lots of information that will be useful to you and your daughter. They can give you a DVD ( it's free!!) It's for both kids and adults. They also have other reading material that can help you talk to your daughter about her alopecia as well as suggestions on how to talk to her teachers and fellow class mates. I know it's hard, it still is for me, but you will be surprised at how much stronger our kids are than we as adults. My daughter has handled this alot better than I have. Hope this helps alittle bit. this website Alopecia world is also pretty great. There are many parents/kids going thru what you are going thru
let me know how things work out for you.
Evelyn (Amanda's mom)
Permalink Reply by Ashlee on July 1, 2011 at 8:14pm
Unfortunately seven years old is sort of a tricky age. I feel like it's almost better to have alopecia from birth, or get it when you are old enough to decide for yourself how you want to handle it. At this point she is probably just confused, and I can understand that it must be really hard to have to make certain decisions for her based on what you think would be easier. First of all, I think it is outrageous of her school not to be more sympathetic and understanding of her situation, because I assume they wouldn't tell anyone who wore a headpiece for religious purposes that it wasn't proper. Secondly, doctors can be unsympathetic jerks as well (and don't even get me started on kids). My advice I suppose would be to have a serious talk with her on how she is feeling as well as her options and ask her what she would be most comfortable with (wether that be wearing a wig, bandana, or going natural). I think it's important to respect her decisions about it even if it's not what you would have chosen for her. Additionally, getting involved with the NAAF community is really an amazing support for both you and your daughter. When the kids are able to get around other kids like them and realize that they aren't alone I think they become much more confident in themselves. I was 20 when I went to my first NAAF conference and seeing how strong these children were made me much more resilient about my alopecia. Also, I have to admit, that I think prebaldism is sort of neat, and perhaps you can tell her to inform any children who ask that she was bitten by a radioactive ladybug and it gave her special super powers that make her impervious to bullies :-)
Permalink Reply by Bella Unica on July 9, 2011 at 5:55pm
I would say show her this website and sites like this to show her she is not alone. Let her look at pictures and profiles to show her that there are happy and pretty people who are bald just like her. Let her know that people bully her not because there is something wrong with her, but because something is wrong with them. (Lack of manners, low self esteem, bad parenting) Usually the normal recipes for bullies>>>LoL
Permalink Reply by Tallgirl on July 9, 2011 at 6:00pm
There is a looooong slide show from the NAAF Conference that shows mostly the kids. www.naaf.org, then go to Conferences or Events, Annual Conference, then look lower left for 2011 conference photos link.

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