My 12 year old son was diagniosed with alopecia about 3 mos ago. We are using Fluocinonide 2 times a day but the hair just keeps falling out. He has lost about 60% now. He has always been a quiet kid and now I'm worried that he will become even more introverted. So far he seems to just try to ignore it. Although the kids at school were curious at first when there were just a few patches, they asked him if he had cancer. Now they don't seem to say much but I also noticed he doesn't like to look at himself too much in the mirror. I did call the school early on and spoke to the principal who told me he would relay to the teachers so they could help if need be.

I've been reading alot on the internet and I'm confused - are there a lot of people for whom the hair never grows back? I've been telling him what our doctor said, that most people get all their hair back in about a year but that's not what I seem to be reading.

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Yes it can grow back. I won't say it does as I know some who haven't been so fortunate to have that happen. My 9 yo daughter Lyndsey lost a pretty large patch last year and has experienced regrowth. It isn't as long or as thick as her regular hair but her cut masks it well. I'm praying that this will turn around for your son and some regrowth will happen. Good luck!
Hi
Sadly with this condition nothing is written in stone. Nobody can really tell you definitively what is going to happen. If your son has alopecia areata(patches) he does have a reasonably high chance of his hair regrowing. If he has lost over 50% of his hair, regrowth which stays and never falls again is a little more rare(but sometimes it will happen). There are a couple of things that indicate that aa may be a little more extensive in your son. He has lost 60% and his first bout of aa is before he was 30years old. There are a couple more things which may also indicate more severe hairloss with prolonged bouts of alopecia. They are if he has other auto immune conditions (Hayfever, allergies, eczema, asthma etc.) and if there is a family history of auto immune conditions.

What I have told you does not totally mean that your son will have extensive hairloss but just that when these things are present with those with alopecia the loss patterns and amount of loss can become extreme.

My daughter has every indicator there is and has lost her hair three time in the last six year. Each time she has grown it back. So, a bit of a roller coaster for us.

I hope this helps and doesn't upset you. I understand how hard this will be for you both and if I can ever be of any help please just pop in and say hi.

Rosy
I have an 11 year old son who has lost all of his hair in the last 3 months. He was diagnosed at age 8 and has always had a few patches until recently. We have tried many different kinds of treatment but nothing seems to work. I'm not sure if he'll ever have hair again. It is devastating. My son also wants to ignore it. He doen't look in the mirror often but when he does, he looks sad. He is generally happy but it is very hard to watch my son have to go through this. He is now being treated with DCPC so I am hoping that this will cause some hair growth. Every child deals with it in their own way. It sounds like both our sons choose to ignore it as much as possible.
Hi Sharon,

I have to say that it is my experience that this is one of the most challenging things we have ever had to go through. You are completely out of control with this disease and never know what will happen next. I have heard stories of children who have gone without hair for years and then it all comes back, and others never see a thing. My daugter was diagnosed just before her 13th b-day. She has patchy which she covers with long hair and "comb-overs" if you will. She clips over and we use masking lotion, couvre, and toppiks. It has happened with her that when she has regrowth in an area, it only falls out in another. I try to get her take vitamin d, which I hear helps. She would just like to ignore it, being a teenager. Whatever, we just have to deal with what is given with us on this one, everyone reacts differently and there is always hope; key is just to be able to enjoy life and be OK with it. I think they will definately learn who their friends are throught this. I have encouraged my daughter to confide in some friends whom she trusts to help her through it. So far so good but those who know aside from her teachers are select by her. We have a wig and headcoverings on standby and I have made te school system aware in case she needs to use them. (They have no hat, scarf rules). I guess what I am trying to say is that you both have to accept this disease, as you will not know whats going to happen next, ever. There is no control with this thing; you could have growth or fallout, and just when you sigh some relief with growth, you could get more fallout elsewhere, or everywhere. We just have to try to be prepared and be there for these kids through what they may face and hopefully we can teach them the confidence to be OK with whatever they may face ahead. Good Luck!
Hi! I am the mother of a 13 year old. and several months ago it was just a small patch in the back of her head, and now she has so many bald spots that have worked there way to the front where she now can see them. We see a dermatoligist every 3 weeks for injections. And there has been a small improvement in the back of her head. But every other day I discover more and they are getting larger and larger. I want to find a support group for her of her age. I am going to put her in therapy when school gets out. I act calm and tell her not to worry but inside I am really nervous for her. We are Catholic and believe in the power of prayer and that's all I know to tell her. 10 years ago I suffered from Vitilligo and understand the psychological effects of a disease that plays a huge role in depression and my heart just breaks for her. She is being so brave about all of this and I admire her and am learning a thing or two from my loving daughter Marissa
Thank you everyone for your input. It is really hard to accept that there isn't anything you can do to stop the hair from falling out. We have since gone back to the doctor and are now using 3 separate topicals. Even the doctor told us they don't know if the topicals help but at least you feel like your doing something. She also asked us if we wanted to try injections - which even though my son would love to have his hair regrow - he wants nothing to do with injections.
The third offer was for a "light therapy" 3xs a week but he would have to shave his head. Has anyone heard of this one or had any luck with it?

She also gave us a script for Hair Club for Kids. They are going to provide him with a free hair piece that they say he will be able to even swim in. He is going to get fitted on Friday. He is very excited about this. I'm hoping it will give him some confidence when we are in the general public.

Sharon
Hi Sharon!

I agree with all the earlier replies. My 23 year old son, Sam, was also diagnosed with AA when was 12. There is no history of alopecia in our family, but there is a strong family history of other auto immune conditions. When Sam was first diagnosed, he tried the creams and injections. None of these treatments were successful for him. As I understand it, all patients respond differently. He has never tried the light therapy, though. He decided early on that he could no longer endure the pain of the injections and elected to cease all treatment. Two years after diagnosis, it developed into Alopecia Universalis. It has been quite difficult for him, but over the years I think he has learned to accept it. As it is now, he really doesn't like to talk about it. He has started to go out more than he has in the past, which is a good sign. Anyway, this disease seems to react differently with everyone. You never know what will happen. Good luck with the light therapy and the new hair piece. I wish you and your son all the best.

Sue

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