Alopecia World
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My son was diagnosed today
Replies to This Discussion
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Permalink Reply by RonaldStone on
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Hey. I've had alopecia sence around that age. My Mother was, and still is Awsome, she always acknowledged any grief I had over this silly disease. But she treated it like any other illness or injury by not making a big deal about it, as to not induce unnecessary anxiety. In this ever increasingly superficial world it will get tough. Just be there for him and help him accept the challenge.
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Permalink Reply by Samantha Rockwell on
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Hi and thanks for the reply. I have down played it ever since we went to the doctor. I have told him that everything is fine, it is only hair - right??? It does upset me but I don't let it show to him. He is at an age where appearance means so much. Thankfully he has long shaggy hair and the spots are easily covered right now. My fear is he will loose all his hair. Is there a chance that it doesn't get any worse than it is now? Or should I prepare myself for him to be completely bald? Thanks for you reply and any tips that you have that I can pass on to my son please let me know - thanks!
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My alopecia has grown very little sence it started. My folks noticed one nickel sized spot and it pretty much kept pace with my head growth to now about 2.5-3in. Diameter circle. Besides the biopsy and diagnosis I've never went back to the doctor because we were financialy poor and symptoms return without constant treatments that might not even work. As you can see from this web site, alopecia is highly diverse. I could start growing hair tomarow, or even lose it all, but mine has always been the same. I also have a tiny spot on my chin and two little ovals on my tricepts. With a hairy chest and belly, ain't that a bitch(pardon). My biggest worry was dating of course. I just kept true to myself, I do not lie cheat or steal. I give people benefit of the doubt and I am not quick to judge. And I found the most beautiful woman with the same qualities.
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It does make me feel better to know that alopecia does not necessarily mean "bald". My husband and I do not have health insurance, but I make sure my kids do. I am hoping that most or all of this will be covered on his insurance. I don't think it has all really sinked in for my son yet. Did it take time for you to really understand what was going on when you were diagnosed? I know kids can be cruel, did you openly tell friends/peers about it or did you wait for someone to ask you about it? How did other kids react to you and the alopecia? Right now my son does not want anyone to know and wants to wear a hat all the time. Do you think he will eventually come to terms with it and relax about it a little more? Sorry it so many questions!
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I have always been curious about the biology, you know the science of it. That makes it more easy to spit the answer to someone. I would talk about it to friends if it fit in the conversation but mostly when people ask. When you use the word disease it don't hurt to note its noncontagious. I won't lie, it is very uncomfortable at times but he will overcome. Really the only harm it does is phycological so he should understand not to sweat it. And you already know some humor is good. I'm thinking for Halloween I will funk up my hair, be a zombie and make it look like my brains got ate out.
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From what I have read it is an autoimmune thing. My other son has cold urticaria - basically he is allergic to anything cold. That is also an autoimmune thing. Honestly I can deal with the cold urticaria better than the alopecia. I have control over my other sons CU - I can dress him according to the weather, not let him get in cold water, etc. I feel so helpless with alopecia because this is something that I can not fix or control. I don't let all this show to him, but I feel like I am falling apart! I feel like it is a bad dream but then I wake up and realize it is real. I am now questioning myself - what did I do wrong?? My son has joked about it some which I guess is a good thing that he can still have a sense on humor in a bad situation. Who knows we might do the zombie thing for Halloween too!
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My mother has psoriasis which is also auto-immune. But I never blamed her for something passed down our genetic line. It wouldn't be fair. She suffers in her own. In your case (I assume) you got the luck of the draw, still no reason to blame you. I'm sure he would not want you to fall apart. If anything, stressing out his mother may quilt him. He should do the zombie thing, if he does it, I will. we can trade pics.
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Thanks for all your help in dealing with this. Three days ago I had never even heard the word alopecia. I guess my stress is mainly coming from the fact that it is such an unknown condition to me. And now I am thrown into dealing with it. I keep telling myself, "it is just hair.". It could be worse. Thanks for replying to my post and helping me begin to come to terms with it all. Sorry if I have bombarded you with questions. Thanks so much for taking time to listen - it means a lot right now!
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Permalink Reply by Lynn W. on
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I know how you feel. My son, who is now 12, was diagnosed at age 4. For 6 years he had bald spots of varying sizes that came and went during the year. I certainly don't want to scare you because it's very possible that's all your son will have. The problem is everything I've read says that very little is known about this disease. What triggers attacks is unknown. What stops the attacks is unknown. What causes the disease in the first place is unknown. Although research may have since proven otherwise, even the autoimmune classification is a best-guess.
As I said, my son was diagnosed when he was 4. We tried every treatment the dermatologists offered. Any ray of hope they could give, we grabbed. Like you, we were fearful he would lose all his hair. The winter after his 10th birthday, our worst fears came to pass. Not only did he lose all his hair, but he also lost his eyelashes and eyebrows. Although I haven't inspected his entire body, I'm pretty sure when my son was 10, he went from Alopecia Areata to Alopecia Universalis.
Yes, it's very possible your son's Alopecia Areata may never get worse than it is. Or, he could go through what my son went through, where he lost all his hair in less than a month.
My advice is to educate yourself. Learn everything you can about Alopecia Areata. Then educate your son's school. I went in to my son's teachers at the beginning of every school year and explained his condition. I gave them pamphlets. I went to the school administration and did the same. I also prepared them for the possible necessity of a 504 Plan in the future. Then, my son's 4th grade year I stopped preparing and asked for a 504 Plan that would allow my son to wear a hat to school. My timing was perfect -- within two months, artful arranging of his hair stopped adequately covering his bald spots, so he started wearing a hat. By January of that school year, he was completely bald.
There is a chance that the school administration is completely unfamiliar with A.A., which is what I encountered. Luckily, I had contacted NAAF ahead of time and received all sorts of information, including a DVD, every bit of which I passed on to the school. Contact the National Alopecia Areata Foundation and Children's Alopecia Project. Not only can they send you information, but if you'd like, I think they'll also put you in touch with others, if that's what you want.
We have always tried to not make a big deal of my son's condition, and he's learning to cope with it. He's actually been a real trooper. But every once in a while, my heart still breaks because he's looking up at me with his big hazel eyes and saying, "Momma, I wish I still had eyebrows."
Lynn
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Hi Lynn! Thanks so much for sharing your story. This is still all so new to us. The last time I checked my son he now has 7 bald spots! Our dermatologist visit is today, but from what I have heard and read I will not get my hopes up. This is a tough age for kids to have to go through this. My son has gotten permission to wear a hat to school, but the kids will not leave him alone asking him why he has a hat on. School will be out next week, but next school year I will make it my mission to educate the school and the kids on this condition. I figure I will get go out to school and eliminate all the mystery of it and maybe my son can move forward. He will not tell any of his peers right now. He just doesn't want to talk about it - I think he needs his own time to process it all. My heart goes out to your son and to you! I have had a hard time dealing with it all myself! How did your son's peers handle it? Does he have any tips for my son? Any and all help is appreciated!! Thanks!
Samantha
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I imagine it would be a bit harder for your son to deal with since he was just diagnosed. My son got his diagnosis when he was 4, so for him, AA has been around for as long as he can remember, and we've been trying treatment after treatment for as long as he can remember, too. We had him in counseling for a while because we thought his attacks might be stress-induced based on the timing of his attacks. During that time, he went from AA to AU. For a time, he was getting scalp injections at the dermatologist. After he was hospitalized for an unrelated illness, he stopped getting the injections. Not because we weren't seeing results, but the the results we were seeing weren't enough to make the pain worth it for him.
The first thing your son needs to do is get comfortable with it. Believe me, I know it's a tall order. When you get down to the nuts & bolts of things, my son's still not completely comfortable with it. But he is comfortable enough to say "I have Alopecia Areata" to anybody who asks. And despite AA being a disease, he understands that he's not *sick*. I think that's a big thing. He's not *sick*. AA (or now for him, AU) is not contagious. He can't pass it on to somebody else. It will not kill him. But it is a fact in his life, and therefore, part of who he is. He doesn't mind talking about it (and gets irritated when he's mistaken for a cancer patient); he just doesn't want anybody to see it.
When he's at school, he has no problem telling a new teacher "I have a 504 Plan" when they try to make him remove his hat. As far as his peers, when his AA/AU first became evident, and he first started wearing the hat, there were a lot of questions. However, I had met with the school administrators and his teachers, and the decision was made that his teacher would announce to the class that Dylan (my son) would be wearing a hat to school because he had a condition that was making him lose his hair. They opted to not make a big deal out of it, but to be more matter-of-fact. "This is what's going on, this is why, now get your math books out," kind of thing. I worked with him back then to come up with an easy answer he could give when he was asked about it.
Of course, there are always some kids who will be mean or teasing. Thankfully, his teachers kept a close eye out for that and nipped those things in the bud. It still took quite a toll on his self-esteem, though, and I remained at the ready, if necessary, to pull him out of school and homeschool him. Luckily, it never got that bad. For the most part, I think kids are curious. They see something/somebody different and they want to know why. Once they have an answer, they move on.
It has taken a long time, but my son now has a few friends that he trusts enough to go completely bald when they're playing over at our house. With anybody else, though, his head is covered. And it's not just a ball cap, because those have a hole in the back. He used to wear a do-rag underneath his hat, but has since switched to the Under Armor cap he started wearing during wrestling season. That way, the hole in the back is blocked and he can pull one or the other down low enough to try and hide that he has no eyebrows.
His lack of eyebrows is what bothers him the most. In fact, I think he could deal with the baldness and actually go bald (without a hat) if he still had eyebrows. That might stem from some particularly cruel children in his class last year that taunted him about his lack of normal facial hair. Of course, those kids were caught and disciplined, but the damage had been done.
With all that rambling out of the way, I'll say this: give it time. Give your son time, and give yourself time. Contact the available organizations for material. Get yourself educated. Get your son educated. The less mystery attached to it, the easier it is to deal with it. It has become more "normal" for us (for lack of a better word), but it's still hard. Sometimes I'll see an old picture of my boy from when he had a full head of thick hair just like mine (we used to call him the duck, because water would drop on his head and just roll off) and it makes me cry. I hide it from him, of course, but it still happens.
Be strong for your son (but don't be afraid to cry in private -- I do it all the time). Help him understand what is happening to him, and support him. Don't push him, don't force him. One big thing for Dylan is lack of control in his life. Between his AA/AU and his other conditions (ADHD, NLD, learning disorders), so much of what happens to him is completely out of his control. Sometimes, he acts out because of it. I look for things in his life that he can have total control with, and I make a big deal out of those things. Even some of his treatments. Those scalp injections I mentioned? Stopping treatment was his decision. I didn't argue.
Education, understanding, and support. And don't be afraid to reach out for help. Or understanding. Or support. Your son won't be the only one who needs it. :-)
Lynn
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Well said Lynn. I don't like the idea of my mother crying in private for this. She hid it good if she did. But, I fully understand it.
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