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Permalink Reply by BaldGirlsDoLunch.org on March 22, 2009 at 7:30pm

Hi Melani-


Your doctor has read the medical journal articles that report that the poorer prognoses are seen in rapid cases at an early age without regrowth. He has read the literature on the most likely scenario, but as you know, nothing is ever predictable with alopecias. He can prescribe some things that sort of work for some people some of the time. But if you don't feel comfortable using it, you have to consider that, too.

We can't measure the worry factor of what might happen down the road and we have little of value to reference when looking back. This is despite the fact that lots of people keep giving money which they assume is for big research but which has been and continues to be for very tiny and insignificant studies.

When the Cochrane Skin Group at the University of Nottingham in England published their article " Interventions for alopecia areata" not too long ago they wrote :" Few treatments for alopecia areata have been well evaluated in randomised trials....Most trials have been reported poorly and are so small that any important clinical benefits are inconclusive." ...."We found no RCT (randomised clinical trials) on the use of diphencyprone,dinitrochlorobenzene, intralesional corticosteroids or dithranol although they are commonly used for the treatment of alopecia areata."

So when you do use something on yourself or in your situation for your child, you'd want to be very clear with your physician about known and potentially risky side effects and then consider your own comfort zone.

The transitional phases and adaptations are tough ones....but you will find this site a wonderful source of support for all the phases you go through.

Thea
baldgirlsdolunch.org....the blog for up to date medical and research info for alopecia areata

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Permalink Reply by Jill on March 22, 2009 at 9:27pm

Melani,

There is a blog a lady named Paula just posted titled MY STORY. In this blog she talks about her recent diagnosis with diffuse alopecia. You should reach out to her she may be able to provide some helpful information. I first showed signs of AA at age 8, it developed into AU at 12 and that has been that, now age 29. I'm happy to share my experience if you have any questions just ask. Good luck to you and your daughter.

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Permalink Reply by Camille Paddock on March 24, 2009 at 8:01pm

melani my 10 year old is going through what your daughter is. It started out as 2 spots with some hair in it and now her eyebrows are falling out. I cryed for her! I felt so bad; lots of kids ask what happened to her and it makes her feel weird she says. I too am trying clobex we have been trying it for about 2 weeks now and I have seen NO hairs growing; I hope it works.

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Permalink Reply by Melani Molina on March 24, 2009 at 10:45pm

Camille,

I am so sorry to hear that your daughter is going through this as well. Genevieve has about 8 spots now, although they are still coverable with wide headbands and her other hair. She has lost a portion of one of her eyebrows, and I noticed a small 'break' in her other one yesterday--I'm sure that will start to go soon. After about 2 weeks and a lot of discussion, my husband and i decided to take her off the clobex as well as the other steriod cream we were using on her eyebrow( I personally think it made her eyebrow a little worse.) Like you, we have seen nothing with the clobex. Everything you read about it says not to use it for more than 4 weeks. Our doctor wants her to use it for 2 months--it just makes me too nervous. There are too many potential complications for something that may or may not give her some regrowth. I understand how bad you feel for your daughter. I feel the same way--I am sick over it daily. This is probably about our 4th month into it. How long has your daughter been dealing with it?

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Permalink Reply by gina on March 26, 2009 at 8:26am

i am 34 but used a cortisone foam for months and helped, but then its your decission, good luck

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Permalink Reply by Jessica on April 2, 2009 at 9:27pm

I'm experiencing alopecia the same kind as your daughter's. I discovered the first spot at the back of my head at the end of Jan this year. There was some hair falling out at the front of my head, but you could never tell. In Febuary and March it became very diffuse, and my hair was just getting thin overall, along with the original spot expanding. As of right now, my hair is still falling. However, if you didn't know me with a lot of hair, people generally can't tell. But i have to tie my hair up to hide it. Although mine has only just been more about 3 months, my experience is quite similar. I think theres a few others on this site who also have diffuse alopecia.
I really hope that your docter's prognosis is correct in not losing everything. I hope your daughter's hair grows back!

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