Replies to This Discussion

Permalink Reply by patty taylor on December 11, 2013 at 3:00pm

Hi.  I have a 10 year old boy and went thru the same thing,  He has been losing his hair on and off since he was 3.  I always kept his curly hair kinda long and mopey so I could cover his "spots".  However, last year, he lost the top of his head and there was nothing, short of a comb-over that we could do to cover it up.  I had gotten him a hairpiece which was glued onto his head that he wore for several months and he hated it.  It finally came the time that I had to deal with reality.  I asked him and he said that he would rather be bald than have to deal with the piece or the sprays that I was filling his spots in with.  My husband and I went to his school and spoke to the counselor.  She told us that it was up to him as to what he wanted to tell the kids.  We spoke to him about it and he said that he felt more comfortable telling everyone that he decided to shave his head, so that it what we went with.  For a few days, he wore a hat and only took it off if he felt comfortable around the kids that he was with.  After about a week, no more hat.  He has been bald for about 6 months now and I have to say that it was a very, very difficult decision but the best one.  Yes, there are some kids that had something to say, but that stopped once they got used to it.  I told my son "you know when someone with long hair comes into school with a short haircut and everyone looks at them, then after 2 days, it is a non-issue, that's what it is going to be like for you".  The kids are bad enough to deal with, but the adults are worse.  I cant tell you how many times people would tell my son he needed a haircut and that he should get a crew cut like his brother.  I wanted to slap them.  I also hate the comment "bald is in" - my response is - not for a 10 year old boy it isn't!!!  Hope all works out for you!!!

Permalink Reply by Laura-monkey'smama on December 11, 2013 at 3:17pm

My son is 7 and having a reoccurrence of his AA after 3 years of it being "in remission".  I get the "at least he's a boy" thing a lot.  He's also a swimmer, so I also get "oh, he could just shave his head" which annoys me even more since even the high school swimmers don't shave their heads!  I have even gotten the "oh, that poor little boy with cancer"  when he was a nearly bald toddler.  Thankfully, he's a very confident kid and likes to educate people who ask him about his bald spots.  Attitude is everything, so keep reinforcing your son's positivity and just be there when he needs to talk.  If he's an outgoing kid, he'll answer questions himself.  If not, I would just respond with something neutral like "he's dealing well with it". 

Permalink Reply by HSchram on December 12, 2013 at 9:51am

     My son is 15 years old.  He was diagnosed in May of this year.  He has Ophiasis type pattern which I am told is more rare and difficult to respond to treatment.  He is completely bald everywhere except the top of his head…like a pineapple!  He has very soft and curly hair and has always worn his hair very long.  His hair is so long it actually covers the balding.  As the hair loss continues to work it's way up to his crown it is getting more difficult to hide and if it continues to fall out we will have to shave his head.  At 15 years old all he cares about are his looks and girls, so this is a completely devastating time to develop this disease.  He has told all of his close friends but worries about what others will think when they find out.  My son has always been such a happy go lucky child.  I have started him in therapy to help him with the depression that has set in over the months we have been dealing with this.  I worry endlessly about him doing something stupid like hanging himself.  

     I know how you feel about the comments that you get from family and friends, I have heard the same kinds of things.  Why in the world my best friend my whole life would tell me that it is a good thing that my son is a cool hip skate boarder kind of kid and that a bald head will fit his lifestyle is way beyond my grasp!  I have wondered if she has even heard the sadness and worry in my voice when I have told her that he jokes about hanging himself.  I have been through everything with this friend, she is more like a sister than a friend yet her insensitivity has hurt me so bad.  I decided a while back to not talk about the subject any more and shockingly she does not even ask.  This has made me question our friendship and after much though I have decided that people just do not understand this disease unless it is affecting them.  I really think people just do not know what to say and in their desire to comfort you they just say really stupid things that they do not realize are stupid. 

    My aunt works at St.Jude Hospital, she has always said "thank God for the bald children", it is their greatest weapon in fund raising!  Hair is a symbol of health and youth and when you do not have it, it usually means one of those two things are missing!  What kind of an idiot thinks a bald child looks great?  The answer is NOBODY!  I have decided that I am going to start being honest with people.  I am going to tell them that what they say hurts my feeling.  I am going to ask them why they don't shave their child's head if it's so cool and in style!  I am going to tell them that weather a boy or a girl is going bald, a child going bald is not natural and it sucks!  I think if I am more straight forward with people, their dumb comments will at least stop.  Perhaps I will gain more supportive friends as a result.  

     I truly wish you much luck and please know that someone out there completely understands how you feel!

Permalink Reply by laura myers on December 12, 2013 at 10:34am

Thank you so much!! I didn't realize there was a specific name for his balding pattern! Here I was wondering why everyone is talking about little circles and patches of hair falling out and his isn't that! His started on his neckline and has moved up progressively fast. He is now completely bald from the bottom of his head to about even with the tops of his ears. His hair is still long, so it does cover most of it, but like you said, soon we won't have a choice but to shave it all.

The ladies at work are kind of bothering me, as they have all said the whole "at least he's a boy" and ignored everything else. Here I am worried sick and so anxious about it because it IS a big deal! While I am so thankful that he is "healthy", this still saddens me! I worry about what it's going to do to him! He is very bubbly and outgoing and likes to help everyone in need, and I don't want this disease to shut him off from that! I'm just at a loss right now! I don't know how to explain to people that this is serious and should be taken that way!

I am very thankful that the school is very supportive and said they will help us with whatever accomodations we need to make with hats, etc. That has put my mind at ease. The counselor also asked permission to talk to him about it and see how he feels, so that makes me feel better too. They know how cruel some people can be and knowing that they are here to help us adjust is great!

While I am sorry you are going through this too, it saddens me! This leaves such a lost feeling inside!

Permalink Reply by Rose Marie' on December 16, 2013 at 11:23am

Hello laura 

I don't have a son with alopecia but I do know a lot of boys dealing with this condition.  You are right as I think initially people don't understand how very difficult this is for boys.  I personally feel that a boy is in the most difficult of positions, as often they have to brave the onslaught of people's ignorance....even from others dealing with the same condition.  They often don't seem to be nurtured to the same extent around their alopecia as a wee girl.  You are very right this is as upsetting for a male as it is for a female.  

Thoughtlessness and ignorance should be reacted to with thoughtfulness and education, which I'm sure you are doing.  I would also arm him with as much education around his condition as possible.  Get him ready to answer any upsetting questions with answers he feels comfortable with.  

If I can help in any way just let me know. 

Rosy

Permalink Reply by Ted Roberts on December 18, 2013 at 8:08pm

Hi Laura

Since I noticed the no guys have responded to your post, I thought I'd have a shot since you are talking about your son. I've had alopecia ALL my life, and I mean alopecia totalis, not areata. It first appeared when I was about two. I wore a hairpiece during my entire childhood...until I graduated from high school. My parents had me wearing a wig from the time I lost my hair, so I never new anything different. I have very definite thoughts about what I think would work the best for your son, and I am happy to discuss with you in this forum or by message. Let me just assure you that alopecia is just an annoyance more than anything else. I played in sports in high school, went to a military academy, and completely enjoy the military. Alopecia never held me back from anything. It sounds to me like your son has a great attitude and THAT is by far the most important thing. Ted

Permalink Reply by laura myers on December 18, 2013 at 10:58pm

thank you Ted! any suggestions are welcome here! I found him a pen pal his age with alopecia and hope that will help him as well!