Hi: Our daughter was diagnosed with ED a couple of years ago. She's only 5 1/2 so we haven't had to have any treatment for it yet. We noticed early on that it took a long time for her hair to come in and her teeth and I've never had to trim her nails. One day I googled hair, teeth, nails and ED came up. I starting asking questions of the dentist and pediatrian and viola! Her teeth are cone shaped too.
So the dentist took a panaram x-ray and it shows she might have 6-8 permanent teeth missing. So we are facing potential braces, prosthetics and, eventually, implants. We found the National Foundation for Ectodermal Dysplasia has a wealth of information (brochures, dentist lists, etc.). The even have information on getting medical insurance coverage for treatment since it's a medical condition.
You probably know a lot more than me at this point. Our daughter's case is mild as far as the hair goes.
mom from South Carolina
at 8:14 PM on May. 25, 2009