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Permalink Reply by Sara and William on March 14, 2009 at 11:09pm

I wish I could give you great advice, but we're very new to this whole situation as well. Around Thanksgiving we noticed a patch, and like you, thought it had been pulled out. Then a couple of weeks later we were all watching a movie snuggled in bed, and when he got up, he left big tufts of hair on my arm. Well, I knew no one had been pulling it, and tried to look and act normal while freaking out that my son was literally leaving wads of hair behind him, on my arms, on his pillow...and of course it was a weekend, no doctors appointment for 2 days.

I was desperate for someone to talk to, and found a yahoo site where I expressed feelings of guilt for being sad. Some of the people there didn't get it, and thought I meant I was sad that he's losing his hair. TOTALLY NOT! I'm afraid of what he may go through before he is an adult. Everyone I run into says "well, at least he's a boy, in a few years other kids might be shaving their heads and he'll fit right in." Or "At least he doesn't have cancer." Of course, it's worse for girls. Of course cancer would be worse. MAYBE when he's 16 he'll fit in at school. But right now, and between now and 16, or 18, or 22 or whatever, there will be moments when someone isn't going to be nice, or is just going to be plain ignorant. THATS what I worry about. I don't care if he has hair. He's my son! But I care that he may have to go through being made fun of, or being unhappy, and not being able to do a single thing about it except be there.

I know, I know, BE THERE is the important thing. But as moms, no one wants to watch their child go through something and not be able to do anything to prevent it. Of course it could be worse, and of course we all go through feeling guilty that we're feeling badly.... But the fact is, we were all children, and we all know how fun it is to be in Jr. High and be different. My two older children are always convinced that everyone is staring at them, and they have nothing at all that stands out about them. I can only imagine what my youngest will feel like when people actually DO stare at him. So it's scary, and sad, and it takes a while.

All I can say is it gets better as you get used to it... Not much of a pep talk, is it? Wish I could say more.

--Sara

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Permalink Reply by errantpigeon on March 14, 2009 at 11:13pm

Not a pep talk, but comforting nonetheless. I'm glad someone understands. Thank you for sharing your story. ((hugs))

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Permalink Reply by Lee on March 14, 2009 at 11:11pm

I do not have a child with alopecia, but I just wanted to mention not to lose hope in treatments. They may or may not work. However, I had my alopecia treated about 5 times before now...so it really depends on the person. It started when I was 16, and I developed AU at the age of 27. From what I know ( don't quote me on this) the chances of hair coming back for someone with patches vs their whole head is a lot greater. Also, age may be in her favor.

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Permalink Reply by errantpigeon on March 14, 2009 at 11:27pm

Lee, from what i've read, age isn't in her favour because the younger you are when you have a first 'episode', the more likely you are to have recurrences if your hair does grow back after the first.
Thanks for the reminder about treatments. We're starting to think a bit about the environmental factors we can control too. We've read that there is only a 55% chance that an identical twin with the same DNA will develop active alopecia if their twin does. This means that triggers are a factor and it's not all genetics.

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Permalink Reply by Dielle on March 14, 2009 at 11:37pm

I can attest to that because I have an identical twin sister with a full head of hair while I am completely bald. I would like to apologize for my earlier comment because I guess I misinterpreted what you were saying in your original post. After having had this myself for so long I would be sad too that my kid would have to go through this because kids are cruel and they are going to say some stuff that is really going to tear her apart. Take it from my personal experience, you are really going to have to build up her self-confidence because a lot of mean kids are going to try to completely tear it apart. Not to try to scare you but people will notice and middle school is the "mean phase" for kids because they haven't learned to filter what they say for the benefit of others. The best thing that you can do is talk to you daughters principal and teachers so that they can be on the lookout for any cruel treatment. Personally I was too distraught to ever tell my mum what other kids said to me (until a few months ago), but if you have the system in place to protect her then she won't keep it to herself. I would teach her to talk to you, really talk because if she is willing to be open now and if you keep the communication open this is going to be a lot easier for her to deal with, I shut my parents out and I finally broke down sobbing in their arms for three hours my freshman year in high school. Don't put too much confidence in statistics, ( I took stat and they aren't always really reliable), anything can happen, she could suddenly start to grow all of her hair back, or she could never grow it back. Odds mean nothing especially when they suck so just keep up hope and don't let the doctors doom and gloom you to death (they are way too good at it). I truly wish you the best of luck!

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Permalink Reply by errantpigeon on March 14, 2009 at 11:44pm

Thanks for sharing. I think the uncertainty that you mention is one of the hardest parts. What we do know is that she has alopecia. This means at any time she can lose her hair and it may or may not grow back. For the rest of her life.
We have approached the school already and they have other kids with alopecia. We're having a meeting after our spring break which is this coming week.

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Permalink Reply by Dielle on March 14, 2009 at 11:52pm

Given that the school already has kids with alopecia it should be a little bit easier for you to get them to do what you want, but beware because they may get their panties in a bunch if you push for her to be able to wear a hat when no one else is and anything else that she may need to feel confident. My mum was especially persuasive and her philosophy was "if you can't give me the answer I want then who can?" she would then climb up the chain of command until someone was willing to give. Some schools, are going to be better and more accomadating then others, and some are really going to dig their heels in so prepare your strong-arm maneuver because you may need it. The most important thing is to look on the brightside that her hair may all come back while still being a realist. Treatments may or may not work (everyone is different), but if they continue over a long period of time to not work you may have to consider stopping them because sometimes side-effects just aren't worth it. Really talk to your daughter when you think she will be able to understand everything that is going on to see if she wants treatments or not because some alopecians will do anything to get hair while others just don't think its worth it. Whatever you do don't let her use her alopecia as an excuse to not do something she loves and really wants to do because that is the worst thing that she can do. Feeling isolated and alone are two of the biggest feelings that come with this.

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Permalink Reply by errantpigeon on March 15, 2009 at 12:12am

Thanks for the tips and insight. It's nice to have the perspective of someone who's experienced alopecia personally.
As for the school, I think this school will be very supportive. My older daughter sits next to and is good friends with a girl who has alopecia totalis and she wears whatever head coverings she wishes. Usually, she prefers a bandana.

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Permalink Reply by Dielle on March 15, 2009 at 12:55am

well best of luck! It seems that the world is slowly realizing that they have to set all of us up equally to succeed and that organizing helpful support systems aren't just "a favor" that is as my high school vp said "unfair to the other students". I personally used to wear a hat through middle school and a bandana for soccer, now I wear a wig, but I am really getting sick of it so I am thinking about going with nothing on. Just the thought of being able to go horseback riding in the summer with nothing holding me down (especially in Georgia humidity lol) is really appealing. It is definitely an ever evolving experience because generally as you get older your sense of self becomes much greater and you stop caring about the staring and mean words. She will get there too if her hair doesn't come back and I hope she gets there faster than I did because you really feel free and not nervous and upset. My twin said she would be willing to shave her head and go bald with me so there's something. Anyways enough about me, I wish your daughter the best, it may not be easy but at least she will learn how to be a better person. I know that I have personally gained a lot of insight into the apparently "mean" people that are really just sad and insecure themselves. As my mum says "everyones got something wrong" and after having had this for so long I believe her. As long as she has her big sister to teach her how to stick up for herself then she should be fine. I know my twin really helped me through it all when I didn't want to upset my mum by telling what was happening. Nothing quite like a great sisterly bond.

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Permalink Reply by stefan williams on March 24, 2009 at 7:23pm

I know by now you have probably have been given alot of differnt advice and support, so i wont go on and on, i have had alopecia from being 3 years old, it never grew back and i am 35 now. all i can suggest as a parent is not too spend too much enrgy searching for a cure, by all means look into the latest treatments etc, but try not to let you daughter feel that you think there is something wrong with her, just encourage her to talk about how she feels about her hairloss, and let her know how beautiful she is.. I think thats about the best you can do for now, it may not be anything permenant, but if it does carry on you can learn different ways to help her deal with it at differnts stages of her life.. good luck.. Stefan

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Permalink Reply by errantpigeon on March 24, 2009 at 11:28pm

Thanks Stefan. This is something that I've thought a lot about. I agree that it's the wrong approach for us to focus on fixing what is 'wrong' with her, especially when we know alopecia is very unpredictable and treatments may not work. I don't want to give her the impression that I need to 'fix' her.
She has lost more hair, and it remains to be seen where this will go. We're at about 50% hair loss.
The last week or so I've really retreated as it was too painful to deal. I'm living in denial maybe, but in a healthy way--just taking some time to process and decompress. We are going back to our family doctor in a couple days for our referral and to talk about testing for thyroid or autoimmune diseases besides alopecia.

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Permalink Reply by Dielle on April 3, 2009 at 1:59am

make sure they run the free T3 and T4, TSH and check for antibodies. I have been to a lot of endocrinologists and they don't always run these tests because they don't think they are necessary. I would also recommend trying to find a children's endocrinologist, when I was 13 our family doctor referred us to an adult endocrinologist and he almost killed me with the medication he prescribed (too much for too long). Do you have any family close by that would be willing to watch your kids for a weekend? If so I would suggest going somewhere with you husband to relax for a day or two.

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