I had hung such hopes on today... not that I thought we'd walk away with a "cure" or anything, but I thought at least we'd have a definitive diagnosis and confirmation for all the research I've done. Or find something out that I'd not even heard of... I'm one of those people with just enough medical knowledge to be truly dangerous. ;-) But I know it, and I know I'm not a doctor...

We started off with the Nurse Practitioner, since we'd have had to wait another MONTH to see the pediatric dermatologist. The RnP was really nice, took Munchkin's medical history, looked at her scalp and nails (she has one thumb that is clearly showing the AA "stipling") and pretty much agreed that it is AA. She said that Munchkin at 11 is in her major growth stage of life and that it's a common time for AA to rear its head. She just needed the Dr to confirm before giving us the prescriptions.

Then the Dr came in, and started saying how the RnP had missed the boat. He said that the bare areas actually have short hairs with some long hairs in the middle, which is inconsistent with AA. He said there is no area that's completely bare, which would be the case with AA. (The RnP disagrees, and says that the dry scalp with some flaking is making it hard to tell what's what.) He started insisting that she's got this other thing, trichotillomania, where she's pulling out her own hair. Now, she's under so much stress, I wouldn't dispute that she might be, but her hair's coming out in clumps in the shower and when she's combing it... that's not from pulling or twirling her hair in her sleep. (We've been watching for hair pulling behaviour and seen none.) So he finally went and started messing with her hair and started having it come out by the handfuls just with him running his hand through it. So then he started talking about telogen effluvium... except there's been no physical health crisis, or immediate psychological crisis either (her stress is chronic). He kept coming back to the short hairs with the long hairs, and ended up saying he won't be able to tell until he's been monitoring her for a couple of months, but he's still leaning toward trichotillomania, possibly along with telogen effluvium. All because he says AA does not start with a large fallout of hair... that AA causes hair to just quit growing and not a massive fallout like telogen.

Of course, neither of the conditions he's talking about have any real treatment, just try Rogaine to attempt to get the hair growing again. Meanwhile it's still coming out by the handful. And I'm confused as all heck, because I've read story after story after story of AA/AT/AU patients who started with a mass fallout of hair.

So now Munchkin has started asking me if she's doing this to herself (yeah, add to that stress level) and I told her not to worry about it, that I just didn't think so. Some of the places I've turned to for information and support won't even let me on the message boards until I can prove the diagnosis of AA, which I couldn't before because we hadn't met with the dermatologist and can't now because he thinks it's something else. I've been sent the NAAF brochure on AA at least three times now, like I hadn't read it the first night I found bald patches on my baby's head and google'd "hair loss children". I need more information now than I can get on WebMD, and apparently more than I can get from the dermatologist.

Though frankly, I don't know why, other than somehow finding out more information makes me feel like I'm *doing* something. And deep down, I know that there's nothing for me to *do* in this situation, which makes me want to find a corner and rock and cry. I'm the Mom, I'm supposed to fix everything, and I can't do a damned thing about this one.

I've offered to set my kiddo up an account here, since everyone's been so welcoming and helpful and friendly, diagnosis or not... so she can talk to other kids her age dealing with hair loss. She's not interested, because she just wants this all to go away. I don't even know if I should tell her that it's likely *not* going to "go away", that even remission isn't a "forever" with this... because I don't have a diagnosis and a doctor confirming my gut and my research. I don't want to hit her with that kind of thing to deal with if it's not for real. Even when we find out, and if it is for real, I don't want to force her to a realization she's not ready for, either. There is *nothing* in the parenting manual about this, yanno? So she's in limbo, I'm in limbo, and we just wait.