Amelogenesis imperfecta

[Randomdogbite]

My 5 year old has just seen the dentist and been diagnosed with this I’ve been waiting for it to be honest as my husbands family all have it. Any advice on what we should be doing the dentist said to go to the GP which I’ve made an appointment for but any other advice. I like our dentist but she’s been quite laid back about our concerns and now an adult tooth has come through she seemed quite alarmed and didn’t have a lot of information except wait and see which I think is wrong. I’m going to get a second opinion also. Any help would be great, I know it’s rare but we are fortunate in a way to know it’s definitely this because of the long family history however so much has changed since my husbands diagnosis 30 years ago. All her baby teeth are very small and yellow her brothers are perfect and white.

Dentist should be referring you immediately to the paediatric department of a dental teaching hospital. UCLH if in London. There are serious implications. In the mean time you should be using age appropriate fluoride tooth paste. Which is 1450 ppm (or thereabouts). Adult tooth paste is fine. Use a pea sized amount on a dry brush. Eliminate all food drink that causes decay: all sugar, all fizz, all squash / anything acidic. Except for possibly on special occasions. Read all labels. Your child is at extremely high risk of decay, you can largely prevent it but it needs a lot of commitment.

Thank you, I asked the dentist and she seemed reluctant to with ‘just one tooth’ but I’m very sure it’s all her baby teeth and probably all adult teeth. Il call back and push for a referral.

It’s a genetic defect. It cannot affect only one tooth. Is it possible that the “just the one tooth” means one has decayed?

She definitely meant only one tooth as she was talking about seeing how the next ones look, I’m upset that she doesn’t seem to know anything and I’ve trusted her for so long and maybe I should have been doing something else. Thank you for your help.

Your GP can refer your child and partner to your local genetics clinic. Knowledge has moved on in the last 30 years and genetic testing may be helpful

Agree with bonzo77. You need a referral to Royal National ENT & Eastman Dental Hospitals or similar, to see a specialist and plan for the future.

My DS has this (inherited from my DH) and was seen at Bristol dental hospital from age 2-18. Originally under Peter Crawford who did a lot of research into AI (has now retired) . He had metal crowns put on all his baby molars age 3. (Under general anesthetic)
He had repeated protective coatings on his teeth and gold surfaces on his permanent molars. Later tooth whitening treatment from age 13-18. So far DS has not had to have any crowns.
My DH had crowns put on all his teeth at the Eastman in London whilst a teenager. He was told he would have false teeth by 40. He is now 50+ and has still got all his teeth! He's had the odd replacement crown. He didn't want our DS to go through that. DH suffered with bullying and was adamant he wanted him treated early to reduce the yellowness.