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Losing it, Growing it Back, Losing it Again
My 14 year old son has been living with his alopecia for about a year now. He shaved is head, had dark patches on his scalp, lost all the hair, and has been completely bald for the last six months. WIthin the last month, he has seen significant regrowth and is starting to express hope that his hair is coming back for good. I don't want him to go through the same pain and disappointment of a year ago if he loses it again. We've explained that this is a lifetime condition and that it may or may not stay, but I was wondering if anyone who has had the experience of regrowth and re-loss could give me some ideas on how they coped with the uncertainty. I just don't seem to have the right words...
Replies to This Discussion
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Permalink Reply by Trina on
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Lorri,
I was a teen while going through the exact same thing as him. It will seem like there are no words but to have faith. You want to just make him aware of the possibilities but being there will be the most important thing. He will need someone to listen to his frustration and a shoulder to lean on. As a parent and a person who has gone through this condition it is frustrating. As a parent you want to protect them and shelter them and when we can't we don't know what to say. I find that kids are a lot stronger then we give them credit for. I was extremely happy when I had re growth but since I had already lost all of my hair it was not the same horror as the first time. To deal with the uncertainty I decided that alopecia would not run my life and that I would be me. To cope you must first learn to accept, because if you can deal with acceptance then the coping will not be as bad. Let him have his moment I say. Make him aware but be there to comfort him if all else fails.
Hope this helps,
Trina
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Permalink Reply by Daria on
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Hi Lorri. My name is Daria and I've had periods of loss and regrowth and more loss for years. I started out with patchy loss about 18 years ago. 10 years ago I lost it all. Totally bald. It grew back completely within a year and a half, probably due to the high doses of prednisone my dermatologist prescribed. Last year it started coming out again and now I'm totally bald again. This time I'm actually progressing toward AU...I've lost arm hair, lashes, eyebrows, etc. However, I'm taking it much, much better this time around. Maybe it's maturity (I'm 36 now) or maybe it's just that it's happened before....you know - been there, done that. I kind of always knew it could all fall out again. Being prepared makes it easier. That's not to say that I dwelled on the possibility while I did have hair....after it was back for a month or so, it was like I never lost it. You just don't think about it really. But deep down, you always know. It'll be harder for your son b/c he's so young and probably still needs to impress his friends (and the girls!), but the strength he's gained over the past year should help him out. I'm not sure if he's been on this site himself or not, but there are several teenagers online. I bet he'd like to talk to them online. Anyway, I wish you the best of luck. As a parent, I know how hard it is to see your child upset. Much love to you both!
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Permalink Reply by Erin on
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Honestly, I am not sure if there are really any "right words". Especially to a 14 year old. I am 36 and have been lucky to have had my hair loss mostly as an adult. Not to say that it isn't devastating, at any age, when it first happens, but each time it reoccurs it seems to get easier because you at least know what to expect. My hair began falling out in small patches at the back of my neck when I was 16 or 17, therefore easily hidden. In 1998 half the hair on my head fell out and I was in the midst of a terrible breakup, so I thought stress was what was really causing my hair loss. Most of it grew back within 2 years and I had a thick, healthy head of LONG hair for another 4 years. It began falling out slowly, then my father got sick and died suddenly. That's when 3/4 of my hair fell out. But within 2 years, I had most of it back. A year and half ago, it started coming out again, nearly ALL of it this time. So it's been getting worse every time, but my hair, so far, always seems to come back. And during the times that I had my hair back, I never thought twice about it falling out again. Only when I noticed more hair in my brush and on the bathroom floor did I start to say, "Here it goes again!"
I don't know if there would be any consolation for your son, but just preparing him for it to possibly happen again is the best thing you can do. Reminding him of who he is beyond his hair would be helpful. After all, we are all more than our hair! Some teenagers can be cruel and I pray your son doesn't have too much cruelty to deal with regarding something that is completely out of his control. Most of my girlfriends say that they would "just die" if their hair fell out. Well, who really has that option? We all have our jobs to do in life. Your son has school, I have work...we all have to keep functioning despite our losses. I was in counseling after my father died to cope with the sudden loss, but it was really great to be able to talk with someone about my feelings concerning my hair loss also. I have noticed that when I am happier in my life, my hair grows back quicker. Maybe you could just encourage him to do things he loves and make him happy. Talking or writing with others his age who have alopecia might also help. I hope this brings some bit of peace to your lives. Take care.
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Permalink Reply by Julia on
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Well, I was 28 when I started to experience AA. I lost all of mine within 6 months of being diagnosed. I had regrowth twice...the 1st time was for a short period of time. the 2nd was for 2 years...during the entire time that I was pregnant and up to a year and a 1/2 after my pregnancy. Now today the same spots that I got last year are still there, just bigger, however I see some hair sprouting out a little.
I always thought that when my hair came back during my pregnancy that I would be keeping it. I wanted to be positive about it...such is Life:) Now I just make the best of things...
Take Care
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Permalink Reply by kastababy on
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I think that in order to deal with the uncertainty and unpredictability that comes with having alopecia, you have to first and foremost accept that alopecia is something you live with for the rest of your life. Your hair MIGHT grow back and stay in permanently, or it MIGHT fall out and stay out forever. It also MIGHT grow in temporarily and fall right back out again. Being able to accept that will go a long way toward minimizing any uncertainty that might arise. I finally came to see my hair as a gift. If I was blessed enough to have periods of full regrowth, then by God I took advantage of it and did everything I could while I could -- hair cuts, coloring my hair, braiding it, you name it. However, since more often than not I'm bald, I have come to accept that as well, and now I proudly shave my head and keep it smooth as silk!!! I know that having alopecia as a teenager is especially difficult, so I wish you and your son the best -- please keep us all posted on how he is doing!!!
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Permalink Reply by marie on
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hiya, this is the worst part isnt it, the unpredicability!!............you have to be honest with him, let him know you will be there for him if it happens again, what i say to my son is that weve come through the loss stages before, and we will again,....if it happens,....my sons only 9....with yours being 14 you can talk to him on more of an adult level. you are doing a brill job. be there for him, as you have been....hope the regrowth stays, i really do..xxx take care.x
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Permalink Reply by Rebeka on
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My hair has been in and out for the last 7 years, or so, never lasting or being gone for too long. Whenever it fell out, my mom always took it harder than me - I'm not sure exactely how I was 'dealing" with it, but I've always known that sitting and crying about it isn't going to make it come back - even at 15. With every fall out, it's been harder to face - it is so easy to get so excited when it starts growing back. But whenever my mom speaks up to try to get me from getting over my head ("y'know... it WILL fall out again") I would get so upset - here I was, trying to see the positive side, because it's here NOW, and not worry about what will be. I wasn't trying to ignore that it was going to fall out, and he's probably not trying to ignore it, either, but as long as he accepts the eventuality, let him feel happy about what he's got now.
Often, with autoimmune and unexpected disorders such as this, sometimes it's the mind that is the best treatment, and a positive outlook may allow for a greater length of time that he has hair! THe first time my hair grew back, I spent the next 18 months looking for signs that it was going to fall out again - basically waiting for it, rather than enjoying whatever I had at the time.
Maybe it's okay for him to just enjoy it for now! :-)
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Permalink Reply by Donna Evans on
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I'm 36 and have had Alopecia for as long as I can remember. I never needed a wig until July of 2006. It's totally devastating. I'm sorry to say that you probably can not help your son with words. At any age it is a horrible thing and a personal thing because I'm sure everyone has a different reaction and different fears. What you'll have to do is probably what my husband did. If your son acts completely furious, mad or frustrated one minute and sad or normal the next minute you'll just have to go with it. If he stands in the shower for an hour crying it's best to just let it go. This is really like mourning a loss of something or someone special. Hair is what makes us who we are in some ways. (For girls more than boys probably.) Just don't treat him different or draw attention to the way he's dealing with it and soon he'll get used to it.
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