Are there alopecia specialists for children?
I have read that there is no cure for alopecia, but there are many cases where hair growth may come back. Are there specialists in alopecia that anyone could recommend who can give better treatment options? It would be for a ten year old who is not responding to rogaine or cortisone shots.
Tagged with: Alopecia Hair Loss • cortisone • cortisone shots • hair growth • rogaine • treatment options
Filed under: Alopecia Hair Loss
I got alopecia areata as an 11-month old. My hair came and went and when I was 9 years old it all fell out. I have now had alopecia universalis for about 17 years. When I was 9 and my hair started falling out even more, my parents took me for UV light treatments 3 times a week but they did not work. I am going to tell you my personal opinion on what you should do, but you don’t have to take it if you don’t want! I just always like to tell parents of children with alopecia my side of the story…
I firmly believe that not only is there no cure for alopecia, there’s probably no real treatment either. Nothing works 100% of the time for 100% of the people. In fact, there’s probably nothing out there that works 50% of the time for 50% of the people. It’s completely a game of chance. In my opinion, you should focus on the EMOTIONAL aspects of your child’s alopecia. Help him/her understand that they are not alone and they are not weird. There is a STRONG chance that the hair will never grow back and spending all your time working on cures and treatments just dismisses the fact that your child is grieving for a loss (the loss of his/her hair). My parents took me to a child therapist who helped a great deal, but it wasn’t until I went to the NAAF conference that I truly felt good about myself. There are about 500-1000 people who attend each summer and your child would be able to go to the kids camp and spend a weekend with other kids just like him/her. They have scholarships if you can’t afford it but the next conference (June 2010) will be in Indianapolis, Indiana. Please consider attending!! It will change your child’s life (and yours!) Let me know if you ever want to talk!
From what I know, you are correct in that there is no "cure" for alopecia; particularly in getting a full head of permanent hair to grow. I have been some what loosely associated with, what is now a woman, who had childhood alopecia. Although I have not directly seen her for several years now, just this last month I heard the latest: Her hair loss was always more of an issue for her mother than it had been for her. At this point, she’s not sure if any of her old wigs ended up in the boxes she packed a year or so ago before her last move. When asked about her wigs she said that they were hot, itchy things her mother "made" her wear as often as she could; and that it seemed at if they required more care than real hair. She said that in reality, by the time she was junior high age, she had pretty much figured out that she was who she was and that the hair on her head didn’t didn’t change who she was as a person. She wasn’t embarrassed if she had no hair on her head and those that couldn’t handle it, well….
I did scope a page or two out on the internet after placing "alopecia children" into the search engine; boy, there are a lot of folks ready and willing to sell stuff for it. But, I did come up with some sites you might want to check out:
National Alopecia Areata Foundation (naaf.org): This site does give you some general and specific information. But, if you turn to their research, current grants, and archived/past grants you can get an idea of who (and which institutions) is doing what in the search for both causes and cures. In turn, this may give you more follow-up paths towards finding information useful to you.
I also came across a site run by a girl with alopecia (alopeciachildren.com) who welcomes electronic correspondence with others who have alopecia. You and/or your son may find some additional answers there.
But then again, I came across a site that speaks of 43 causes of childhood hair loss (wrongdiangosis.com). It may provide some helpful information towards confirmation and/or questioning of your son’s diagnosis.
Lastly, I also found a site that assumes the alopecia diagnosis is correct and concentrates on working with the condition (childrensalopeciaproject). Their emphasis is in giving support to parents of , families of , and individuals with alopecia.