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Ectodermal Dysplasia

*Kinda' long, sorry!* My son had a denstist appointment yesterday to have a tooth pulled and it was the first time we had been to this peticular Pediodontist. He happened to be a specialist (Thankfully) and he thinks my son may have "Ectodermal Dysplasia". We have an appointment with his Pediatrician this friday to find out exactly what's going on. If my son does have it, it is a very mild case, just his teeth that we can tell. The dentist told us he will need dentures and eventually implants. Just wondering if anyone has had to deal with this before and what I should expect. My son has been perfectly healthy up to this point, except for eczema, and I'm freakin' out here. I know this is pretty rare, just hoping someone sees this that may know anything!

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DsMama05

Asked by DsMama05 at 3:22 PM on Mar. 11, 2009 in Health

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Answers (1)
  • 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.

    If you are anywhere near San Fransico (what are the chances?), there is a place there that specializes.

    mom from South Carolina
    tjpsc

    Answer by tjpsc at 11:27 PM on May. 24, 2009

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