Replies to This Discussion

Permalink Reply by Margie on September 10, 2008 at 2:10pm

Hi There,

I'm also new to this site and am so glad you found it. You will find, as I have, so much great information and perspective from people who have "been there and done that". My 9 year old began losing hair 1 1/2 months ago, also at an alarming rate. We also had to wait about a month to get in to see the dermatologist. The waiting is the hardest part because you feel absolutely helpless, I know. I think the best thing you can do is continue to educate yourself from sites like this. I picked up so many valuable suggestions on how to handle various situations - the biggest one was dealing with the school. If it comes to be that your daughter does in fact have alopecia, how to deal with the other kids is going to be huge on your list. We personally decided to deal with it head on and had the school nurse do a presentation. Casey is still in elementary school and so the "atmosphere" may do differnet at the middle school level. However, for us this has been wonderful. We only had one incident on teasing and what it proved was the fact that Casey has a ton of wonderful friends who won't put up with people teasing him. The friends immediately went to the teacher and the situation was over right away.

I truely know where you are coming from and I hope all works out well for you and your daughter. I know this sitting and waiting is a real bugger.

Permalink Reply by Miranda on September 18, 2008 at 3:35am

Hello,
I have a 5 year old that has had alopecia since she was turning 2. I also had to wait about a month, I think more, to get to see the dermatologist the first time. I had no idea and didn't do any research, like you have, until the dermatologist explained what alopecia was. So, you're one step ahead of what I was. It seems like you want information. The first thing I looked for was an official Alopecia website. The National Alopecia Areata Foundation's website is: http://www.naaf.org/ . Here you can request medically verified information about alopecia and also great resources for school, family, parents, etc. I received a bunch of information in less than a week from them.

My daughter is a lot younger than yours, and only began school this year. So far what we have done after the first questions and even one teasing came about, was have the teacher address her immediate classmates, not necessarily about alopecia, but the fact that everyone is different. She incorporated the discussion and began "student of the day". This made Della gain confidence and also let the kids know that Della was "fine" with it.

Well, finally some parents actually started asking Della things that I think bothered me more than her because I don't really go up to their kids and ask their child about a "scrap on their knee" (exaggeration). Well, Della's teacher and I discussed how to get the word out. We finally decided that we would include an excerpt about alopecia and most importantly how it affects the person more socially and emotionally than it affects their health. We made clear that they knew it was not contagious, wasn't harming her, and that Della wasn't sick. We also included that it is sometimes triggered by stress, etc. We then asked that the parents discuss this with their kids and ask them to put a foot down that teasing would be unacceptable. The next day after school her teacher came up to me and said that another child in the class was talking with their mom about alopecia and the girl was so mad that something like this could be happening to her friend. I thought this would be a step to something positive and Della hasn't had any other problems thus far.

We have tried a lot of therapies, with no results and a lot of set backs and severe side effects. We as a family have given up on therapies and decided that this is who she is. We don't expect her hair to come back and honestly find it hard to remember her with hair. Of course, you have had your daughter with hair a lot longer than I did. We just love her for her beautiful, goofy, little princess than she is. Some days are definitely tough, like when she comes to me with a comment that so and so made, or the desire to "look" like the other girls. But there are so many more great days that I have with her than bad. The biggest thing that I am trying to learn and trying to understand is that I don't have to care what others think, and to disregard the looks, and to look past the ideals from people of her being sick.

Anyways, I don't have any experience with older children and alopecia. I remember when I was in middle school and my appearance was really important to me. I think that until the child can accept that this is going to be apart of their life, intermittently or life long, then they are going to have a lot of problems with self-image and self confidence. The only thing I can suggest is to reassure, of course, how much you love her irregardless of how she looks, and hope that she has some great friends that are going to continue their friendship and support as she struggles through this. I suggest that you stay open with her about her alopecia, how it affects her. But, I think that one the biggest things and hardest things I feel she should feel like it doesn't and hasn't made a difference in your life. Let her make the decisions (that are appropriate for her age and competency) because some of the things we have been offered from her doctors have been outrageous, especially for someone her age. I feel that she shouldn't be forced to wear a wig, or hat, or any other kind of cover up. Just be open to how she feels, after all she is going to be the one living with it.


Well, good luck and welcome. I hope you and your daughter are well. Feel free to add comments, posts, etc. whenever you need some added support or have questions!

Miranda

Permalink Reply by theantichick (Shannon's Mom) on September 18, 2008 at 3:56pm

Thanks for the reply and the experience. I've given her what information I have (though so far I've held back the full extent of the statistics about the hair coming back... she's asked if all of her hair will fall out, I've said I don't know, but it might. She's asked if it will grow back, I've said I don't know.) I've then let her make the calls about her appearance, especially since it's so hard for a girl in 6th grade. I'm just so glad that we're in a financial position to do this, it's not been inexpensive. :-/ Right now, she's most concerned about looking "normal" and she's very pleased with her wig, it's made her feel more confident. I've been very vocal with her about the fact that her hair doesn't make her less or more of a person, and she's beautiful with or without it. I found out that a radio personality she knows on Radio Disney has alopecia and chooses not to wear a wig unless it's for a modeling gig, and found a YouTube video for Munchkin to see. That opened up the opportunity for me to let her know that it's ok in the future if she decides she doesn't want to wear her wig anymore, or just wear it sometimes... wear a scarf or hat, or nothing (except in the sun).

I'm so proud of her, though... she took the initiative to get in front of her entire 6th grade class and tell them all about it, before she started wearing her wig... and I'm so glad that they've all been very supportive. There's been no teasing, in fact some of the boys have been very complimentary of her "new look" which she's liking (a bit more than *I* would like... hahaha).

Permalink Reply by Shana and Taylor on September 26, 2008 at 9:02am

Hello,
I have a ten year old daughter that has AA. She was diagnosed about 6 months ago. We also went to our pediatrician first then a long wait to the dermatologist. Throughout the long wait we tried lotions and creams off the internet that other people had tried, some with success and some without. Unfortunately Taylor didnt have any success, the spots kept getting bigger. Finally the drmatologist appointment came and they gave lotions and creams. We tried those until the next scheduled appointment but the spots kept getting biggerand new ones kept appearing. I talked to the school and her class was informed by her guidance counsler and everyone was wonderful about the whole thing. She has had only one instance on the bus with 2 boys making fun of her and we took that opportunity to reassure her that she is beautiful with or without hair and when someone is saying something to hurt your feelings just to remember those words. Well we went to the follow up derm appt. and the spots were much bigger and she had many more. They recommended steroid injections right then and there at that appt. I talked her into getting them...she was scared to death...she was a trooper and received over 30 injections! We noticed alittle growth from some of the sites but nothing spectacular or worth putting her through that again. So then we decided to go the wig route. We found out about an organization called hair club for kids that specialize in biomatrix wigs that actually get "glued" to the head. We decided to forgo anymore treatments and get a wig that permenatly stayed on and is taken off every 4 weeks to wash the wig and scalp really good and then gets reapplied. It has made a world of difference in Taylor about how she feels. She loves the wig, she cand wash it, swim in it, straighten it, ect just like her old hair. It is wonderful!
I guess as time goes on we will see how the AA will continue... either grow back or loose it all. But for the time being we will continue with the biomatrix wigs. She is happy and that makes me happy.

I bet my Taylor would love to talk to your daughter. She has talked to others on this site and it helps her to talk to kids her age going through exactly what she is feeling.

Take care.

Permalink Reply by theantichick (Shannon's Mom) on October 6, 2008 at 3:52pm

::sigh:: We just got through with the dermatologist. I'm now even more depressed. He doesn't know what's going on. He says there are no true "bald areas", though it certainly looks bald to me, as well as to his nurse practitioner. Munchkin has now lost probably 60-70% of her hair. He says that the areas that look bald, really have short hairs but have long hairs in the middle, which is indicative of this other condition where she would be pulling out her own hair. (Trichotillomania) We have seen no evidence of this (and we have looked). Her hair falls out in clumps when she showers or combs her hair. He then found that with the "pull test" it was coming out for him in handfuls, which he says doesn't happen in Alopecia, it happens with yet another condition, Telogen Effluvium, but that the pattern doesn't really fit, either. So he's thinking maybe she has both of these other things, but not Alopecia because a huge fallout isn't the way Alopecia works, he says the hair just stops growing with Alopecia. But I've read story after story of people with Alopecia where it started with a massive fallout. So I'm confused. And we still don't have a diagnosis. He says there's really no treatment for either of these, other than we can try Rogaine to maybe help with some hair growth.

I am frustrated, and so is my kiddo, to not have any real answers. We go back in a month. The dermatologist definitely thinks whatever it is, it's tied to stress. My kiddo's under a huge amount of stress, but very little of it falls under my control. My ex-husband puts a lot of stress on her and I don't have any say in what he does. I'm finding a therapist for her, but I don't know what else I can do.

Is it normal to get the run-around with different diagnosis for this?