Starting Over Talk - Peer Coaching Support Site

UGH.... normally wouldn't put this out there, but my support system is out of town for the week....

starting about 4 years ago my son began losing his hair... well actually the first time happened when he was 8 months old, but at the time no one realized why it happened... when it happened the 2nd time, we found out that he has a genetic flaw that tells his immune system that his hair is 'bad' and his immune system attacks his hair, causing it to fall out in large patches.... before he has lost his hair, his eyebrows, his eyelashes, even the babyfuzz on his arms... we did 2 years of steriod treatments... that would be steriod shots to his scalp... and got all his hair to grow back...

well in the past month, the bald patches began showing up again... no one knows what causes it... there is no 'cure' for it... we can do things to make the hair regrow, but we can't do anything to stop the cycle from happening... it's looking like he is on a 4 year cycle for this... this is the 3rd time it's happened to him, but harder this time because of his age... he just turned 12... shaving his head doesn't really work because basically, he's so white he glows in the dark... we shaved his head once and he looked like a very sick cancer kid which only made his feelings worse... so now we do the steriod treatments because they do work in making his hair grow back.... but it's so hard on him physically to go thru the treatements.... he had 75 shots to his scalp this morning... and now for the rest of the day he can't go outside into the sun... over the next 3 - 4 days, he will be moody, emotional, more so than the average 12 year old boy will be... his eating will be sporatic at best, but he will gradually become 'puffy' from the steriods...

as a mom, it's so hard to allow a dr to do something that you know is physically hurting him during the treatments... and the fears over what steriods could be doing to his body at this age... I have guilt feelings of what if these steriods are killing his chances of having children before he can even decide for himself if he wants them.... the shots are a low dose, but who really knows what damage steriods can do over a long period of time... t hey are still coming out with the dangers.... but the alternative is to let him have gaping bald spots that cause teasing by other kids.... they have 'outlawed' wearing baseball caps in school, we have gotten permission before for him to wear one in elementary school, but in jr high, it woudl only draw more attention to him.... so it's a horrible catch 22.... do something to help him that might in the end hurt him... or make him suffer thru endless teasing over something he has no control over... it's beyond just a difficult thing to decide for him... when he is asked what he thinks is best, he wants to suffer thru the treatments.... which are every two weeks now... we started treatments last week and had one today... the next one is 2 weeks from now... our hope is to have enough hair grown back by the time school starts again.... *crossing our fingers*

Wow... You son is a brave and courageous young man to sit through 75 injections of steroids into the scalp...

The first thing I thought of was alopecia... but maybe this is something different.. Does it have a name and can you research it? Maybe there are other treatment options available.

What sort of doctor do you have to go to... A dermatologist?

Wasn't too long ago...that it was in vogue for the kids to have the Michael Jordan look.... But maybe because he is so young..it just won't carry...yet! The school might be able to use it as an opportunity to educate the other kids.. Teaching them to be sensitive to others.. and that you can look a little different and still be perfectly normal...or sometimes the opposite is true.. They can look perfectly normal and have behavioral handicaps..

I can't imagine having someone stick my scalp 75 times! That sounds torturous! My hearts out to you.. and him!

it's called areta allopecia (sp) or childhood baldness.... we can either let it run it's course, which we did when he was a baby without realizing what he had... he was 8 months old when his hair fell out and almost 3 before it came back... his nickname as a baby was 'kojak'... he was 7 when it happened again, and now he's 12...he sees a dermatologist for it... we started with steriod creams applied twice a day to the spots followed by another cream to keep it from burning his scalp.... then the dr moved us onto the shots because the cream wasn't doing enough to regrow the hair... the shots do work, just takes time and a lot of the shots... they do use the smallest needle available, but it's still a needle....

unfortunately he just doesn't have the right look for going bald... and when the peach fuzz begins to grow in after shaving, he still has obvious spots where there is no hair... the bald spots are smooth like a babies bottom, no hair at all until the steriods start it growing, then it comes in pure white before turning brown....

Amberlyn, my heart goes out to you and your family. Indeed, what a courageous young man!!!

Sometimes when kids (or adults, for that matter) just accept these occurrances and kind of go with the flow and are still able to keep their confidence, then others will take note and be encouraging instead of discouraging. I don't know if that made any sense! A dear friend of mine had leukemia when we were in our teens. She tried the wigs and stuff for a while but just hated them. She decided to just go without any head covering to see how it felt. She walked around bald with a big, beautiful smile on her face and - Wow! She had more dates than the rest of us combined. People were drawn to her for her honesty and spirit of acceptance, I think. I don't know how your son would feel about that, but it might be less stressful than trying to cover it up. Just the fact that it would definitely grow back would be an encouragement!

I don't know how you feel about alternative health treatments, but I recommend homeopathy and chiropractic to everyone who will listen to me. They have both saved my life by improving the quality of it immensely. It probably wouldn't help with the cycle he's in right now, but it could possibly prevent the next one. God Bless.

It might be helpful if you can get him into a peer support group to help toughen him up for his teen years. If he gets too much teasing, his teachers, etc. can be prepared and go to bat for him. If he's a little guy, he may just have to learn to "roll with the punches." Maybe he could develop a better sense of humor-- many comedians compensated with humor while growing up. Also, help him find something he can be good at-- where hair doesn't matter-- something like swimming, self-defense, boy scouts etc.

Your family is my thoughts and prayers, amberlyn. It is so hard as mothers to watch our children go thru such difficulties. Although we don't have the same medical issue, I can understand what it's like to have a child that's affected by something. Please know that you do have support and encouragement here. God Bless.