On a Quest

Not sure I was going to blog about this. But I'm sure people always wonder and never want to ask and risk being rude or intrusive. So I will just tell you. We are on a quest. A quest to figure out why my poor little Ashlyn's hair is so thin. I know it kind of seems like a silly thing, but I know people wonder (although if you comment please don't tell me you always did.) I know it's unusual to have hair as thin as hers. It's been a hard thing for me to start looking into and doing something about. Not because I don't want to bother with it, or because I think there is something wrong with her. I don't. It's more because I haven't wanted to draw anymore attention to it and make HER feel like something is wrong with her. And I knew once I started taking her to doctor's and such that I would have to put it all out there and talk about it right in front of her. But I realize it's a pretty cruel world out there. And school is one of the cruelest places. Pretty soon people are going to start asking her about it, or making fun of her. So before that happens, I hope to be able to help her.

This "quest" actually started years ago when she was just barely three. At the time it wasn't necessarily her hair but her skin I was trying to help. It was always bumpy and red. So we went to pediatricians. We went to an allergist (Where they poked the poor girls back 50 times with tiny little needles. I'm still traumatized by it. I think she might be too. She claims she remembers it.),  and we went to a dermatologist. Long story short, we came up empty handed. Blood work was normal, no allergies, no known disease to attribute it to. So some dermatologist told me it was Keratosis, gave me a cream and a shampoo to use and sent me on my way. Oh....and he told me she would most likely grow out of it. So I used the cream, I used the shampoo and waited. Nothing happened. I was tired of Doctor's and so was she, so we gave up, thinking she would, like the Dermatologist said, grow out of it. 

Well fast forward 5 years and while her skin isn't as red or bumpy, her hair is still pretty darn thin. I think we'd kind of gotten use to it to a certain degree. But when people started to slowly ask me about it, I knew I needed to start looking into it again. So we started a few weeks ago at her pediatricians office. Her doctor was really nice about it, but was pretty quick to think it was an autoimmune disease called "ectodermal dysplasia". So of course we went home and googled it. Some of the symptoms seemed to match up. Some didn't. We thought if this is really what it is, than she has a pretty mild case of it. Some kids who have it have no teeth (or if they do they are tiny and sharp), no hair (or very sparse), no sweat glands, missing fingers/toes, etc.  From what we read it has no cure. Only treatments to help with the cosmetic problems. I thought, well all things considering, it could be a lot worse. So I was gearing up to start some kind of treatments. I made an appt with a dermatologist and went to see him today. I admit, I was pretty nervous. Not really sure what he was going to do or say. It was a pretty interesting visit. The nurse first talked to us, took down some info and then left.  A few minutes later the Doctor came him. He asked me some questions, looked at her and then stood there. He seemed confused (either that or about to give me really bad news. I wasn't totally sure at the time). Then he said he would be back in a few minutes. Okay??? That was weird. So we waited. Sure enough a few minutes later he came back. Basically, the guy didn't have an answer for me. So the confused look I was reading from him was accurate. He thinks it's genetic (even though no one in me or Paul's recent past has anything like this), but he doesn't think it's this ectodermal dysplasia that her pediatrician thought it might be. He got me a number for another dermatologist and sent me on my way. 

So now we are back to square one. I made an appointment with this other dermatologist as soon as I got home. I couldn't get in for over a month from now, but I guess since we've waited this long, one more month isn't going to matter. The funny thing is that every doctor I've seen so far keeps telling me that whatever it is that it doesn't affect her brain or her ability to function normally. DUH! I know that. She's a smart, sweet, fun little girl. That was never in question. I just want to know why her hair never grew. Ok, so I guess they have to rule out everything. 

That's all we know for now. Hopefully we will have some more answers in another month or so.