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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*
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