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New to this - how to help my son deal with alopecia
My son's hair fell out overnight last week, and now his eyebrows and most hair are gone.
He was diagnosed with alopecia, which we'd never heard of.
How can I help him deal with the emotions that come with the change in appearance.
He was diagnosed with alopecia, which we'd never heard of.
How can I help him deal with the emotions that come with the change in appearance.
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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How old is he?
Contact childrensalopeciaproject.org for materials, resources to other parents and a free library of books for your son and his school. Their booklets and info are really attractive for kids and their friends. Contact the director, Betsy Woytovich at CAP4U@verizon.net
If you're on the east coast or can travel, they are having the first annual alopeciapalooza this summer where one of their first purposes is to give parents and kids content rich programming to deal with self-esteem and emotions.
Thea
baldgirlsdolunch.org
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Permalink Reply by Rose Marie' on
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Hi
How terribly difficult that will be for you and your son. I think Thea has a good idea with getting in touch with the childrens alopecia project (cap).
I'm a mum of a daugter who lost her hair at 12 she is now 18. I'm happy to pass on any information that has helped us during the last six years.
Hugs for you both I can imagine you are both feeling quite shell shocked.
Take care
Rosy
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Permalink Reply by Cindy on
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Hi Carley. I am a mom to a 7 yr old girl with Alopecia. I am sorry to hear your son has lost his hair rather quick and that you have to go through this. You are not alone in this. There is a great community of people here on Alopeica World to support you. When Sam developed alopeica we never heard of it either and it came out of the blew. No one in our families have it. Now, we just learn how to deal with it and have been for almost 2 yrs now. The best way to help your son understand this condition is to simply tell him that is body is allergic to his hair. I know that is hard to interpert, but that is basically what this condition is. It is unpredictable and at any time his hair can regrow on it own. There is no cure, but there are things you can try. Have you gone to a dermatologist yet? I suggest contacting Childrens Alopeica Project as suggested. They can send you materials and books and through there data base they may have another family in your area you can connect with. I also suggest contact NAAF. They have resources that will help you explain alopeica to your son and even help you do a class decision on it if you feel you want to...I hope this info helps..Cindy
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Thanks to you guys for your encouragement.
I'll definitely look into the resources you've suggested.
It's just so hard when all I can do is say I love him and hug.
We went to a dermatologist today and they put him on cortisteroids, a topical ointment, and rogaine foam. I'm kinda worried about the steroids though...
Next week is Spring Break for us so we are just going to forget the world and enjoy ourselves.
I'm hoping the time away will give us all a chance to adjust.
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Just keep supporting & encouraging him. Make him feel comfortable wherever he goes or even at home. Talk to ur relatives & his friends before visiting them to not talk about his problem in front of him. Thats wat my parents used to do wen i first had to deal with Alopecia Universalis.
My best wishes r with him.
God bless!
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Permalink Reply by lidia on
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Hi...
I am sorry to hear how quickly your sons hair fell out... I know its a chock for you and him. I myself lost all my hair within a week... it was very hard. One thing that probably would have helped me more would have been a psychological support... i never got one and let me tell you... at 11... it was hard. Another thing to do is to make him feel as normal as possible... not ashamed of it. Talking with the kids at school and teachers is a great idea... making sure that he is surrounded by supportive people. And make sure that you continue telling him that he is cute... with or without hair. It took me a long time to feel pretty ... bald... so its very important to help him in this jorney...
good luck
lidia
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Permalink Reply by Ohio on
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Hi Carley,
I am the mother of a 9 yr old boy that was born with Alopecia (which I have learned over the years is extremely rare, only 5 reported cases of children born with it, is what I had been told by a dermetolgist at UCLA). Your story brought tears to my eyes becuase I understand the pain that you are feeling for your son all too well. I have to admit my sons condition kept me up several nights worrying about his emotional state. I have never let him see me upset though. I would suggest contacting the Alopecia Foundation, I found the org. to be extremely helpful in providing information. I am not sure how old your son is so this may not apply however, I have always kept him involved in sports and other activities to make sure that he was always confident and not intimadated (because of "looking different") to participate in group activities. Two years ago, after the suggestion of a dermetolgist, we tried a steriod ointment. I realized that I needed to stop worrying so much when my son told me that he wasn't sure if he wanted to use it becuase he would look different if he grew hair...lol. On a serious note, my son does seem to be more concerned as he gets older however we continue to support him and tell him that we understand that he may not like looking different however everyone is unique in their own way and to be proud of the person that he is. My prayers go out to you and your son, if you every need to talk send me an email.
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Permalink Reply by Margie on
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I'm so sorry to hear what you and your son are going through. My son lost about 75% of his hair in a about 1 1/2 months. For my son, he is very athletic and I keep him focused on his sports. That has really help to build a great self esteem. I would recommend his focusing on something that really makes him feel good about himself. I spoke with him and we decided together to be very open with everyone about it. I did not want him to feel this was anything to be ashamed of. The school nurse came to an assembly at the beginning of the school year (the aa started over the summer last year). She asked who knew Casey and just about all the hands went up. She then explained what e was going through. It was the greatest thing we could have done. When kids are informed they can't "make up" the answers. We now make sure to open it up to his sports teams and any groups he is involved with. This educated the kids and makes him feel he has nothing to hide. It's his idea to let people know and I'm proud of him for his decision. I have always told him I would give him all the information I knew and we would make the decisions together. But honestly the final word will always be his and he knows it :)
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Permalink Reply by Debbie Lopas on
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My son also lost all his hair within a short time. He is 11 and does not like to talk about it. He does not want me to talk to his teacher, principal, coach or anyone about it. He prefers to ignore it. I know it bothers him because I can see him when he looks in the mirror at himself. Every child handles it differently. My son is involved with school and sports and his friends so he doesn't spend a lot of time fretting about it but the knowledge that he looks different is always there. Your son will learn to deal with it the best way that works for him. Just try to follow his lead and be supportive.
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