Replies to This Discussion

Permalink Reply by Angie, Gracie's mom on August 31, 2009 at 12:36pm

No one in my very busy pediatritions office has heard of it in someone Gracie's age (she started at 13 mo). An article on Babytalk said it is very rare under 18 mo, so I was shocked when she was dx. We are going to see a hair specialist tomorrow, she is well published in alopecia and has been on the board for NAAF too. I'm hoping she can shed some light on this very question. This group is somewhat new though, I started it too see how many of us where out there, but there is the other group too that most go to first. It does seem that it mostly starts in the 3-5 yr age from what I've seen on this site.

Permalink Reply by Angie, Gracie's mom on September 2, 2009 at 12:32pm

We saw Dr. Janet Roberts, and she confirmed the dx of AA. I was holding out some hope since my ped has said it may not be. She did say that Grace had a good lab workup, and reassured us she is healthy and thriving. I posed this question, and she said that she has seen too many little ones w/ this disease. So I guess we are out there, just not in forces. Unfortunately, the bad news is that it can be much more pervasive when it starts this young. But it is an unpredictable disease. I woke up w/ anxiety last night about all of this, and what it is going to mean for her future, the fact that I cannot even start to imagine what will happen since it may or may not.

I would encourage all of us to get on the registry. Dr Roberts recommends it too, so I fully believe it is on the up and up--and it is federally funded, they are working on a cure, and the more of us who do it can help, maybe even the littlest ones would be the most help since they have the least environmental exposure time to other stuff. Angie

Permalink Reply by Shay and my girl Kaleigh :) on September 2, 2009 at 1:37pm

what registry? can you post more about it? :) Shay

Permalink Reply by Angie, Gracie's mom on September 2, 2009 at 4:17pm

Yes, try http://www.mdanderson.org/education-and-research/departments-progra...

So I found this from the NAAF site, which my derm turned me onto. They are comprising a large study, and the great part is they are looking for a cure, and if you sign on the registry you are first in line for treatments, if they find one. They send tubes for blood work, but this is if you get further in the study, and you can go into one of their sites or your derm (has to be a derm) can fill out the papers once you get to second tier. But check it out, it took me maybe a half hour to do Gracie's. Don't do the family ones, I did it only to find out they aren't looking at family anymore but haven't updated their site yet. And I truely think it is legit. You can also look at NAAF, but their link doesn't work anymore. Its under research. Let me know how it goes!! Angie

Permalink Reply by Shay and my girl Kaleigh :) on September 2, 2009 at 7:53pm

Thank you! I looked at it but it says something about her having to see a derm. and she has only seen her pedi so far. I'm not clear about if that is before she applies or if she is accepted but I did send them an email to try and find out. It will be a great thing if it works out! Shay

Permalink Reply by Angie, Gracie's mom on September 4, 2009 at 1:17pm

You only need to see a derm if you get accepted to the second tier. or you can go to one of their sites if it is near you, then you don't have to pay to see a derm--but I would push to see one if your insurance covers it, they know so much more than peds do! My ped still wouldn't call her AA, even after the derm said she had it. Good luck!! Angie

Permalink Reply by Shay and my girl Kaleigh :) on September 4, 2009 at 1:48pm

oh ok, thanks. She has medicaid so they won't pay for anything they don't have to, but her pedi is treating it as AA and seems to be very knowledgable about it atleast. Her hair is still thinning new little spots keep poping up so she is going to do blood work when we go back in a couple weeks. She said not to wait, if it became extreme or she lost it rapidly, she wants to know the progress. She did say there wasn't really anything to do to stop it but that we would do a full blood work up and check her out throughly. Shay

Permalink Reply by Angie, Gracie's mom on September 4, 2009 at 1:55pm

That sounds good--I'd encourage you to have her iron checked. The spec we saw said they is a new article that states that their is a connection between low iron and AA. Gracie had really low iron, but it only showed up when they tested her Ferratin--iron stores. She too had a full blood work up, and that was the only finding. Angie