My 3 Yr Old Daughter Has Dentinogensis Imperfecta...

I myself do not have the disorder but my 3 yr old daughter does she got it from her dad which left far before she was even born. I know plenty about the disorder however I am having a very hard time finding treatments and was wondering if there is anyone out there that is going through this or has gone through this that may have some helping info.

mandyhousman mandyhousman
22-25, F
4 Responses Mar 8, 2010

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Hi, I have 2 children with the condition, inherited from their dad. Both had stainless steel caps put on before 3 years old, this required being put under with general anesthesia. The front teeth had white composite resin facings so they looked like normal teeth. We had this treatment done at the University of Iowa, where we continue to be treated. Our health insurance only covered the cost of the anesthesia and our dental covered up to its deductible maximum, so the remainder was our responsibility less than $5000 each. We used my husband's FLEX spending account to help. Unfortunately it has to be all paid upfront for the dental portion outside of what dental will pay. <br />
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Our dental specialist said treatment needs to occur before permanent teeth erupt because, the excessive wearing of teeth can lead to abscesses, collapsed bite, and abnormal jaw formations. <br />
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Simply "painting the teeth white" with bonding will not adequately protect the teeth or the bite, according to our doctor. Make sure you go to a dentist who REALLY knows what they are talking about or who have treated people with the condition. Many are too proud to admit they don't really know what the condition is or the best methods of treating it! If the treatment sounds too simple--get a second opinion! It is really sad when a dentist starts trying to explain the condition to you and you have to explain to them that they are talking about the wrong thing! Seems like they know more about Amelogenesis Imperfecta which has more to do with the enamel, where as dentinogenesis is about the dentin! That's when you thank them for their time and hit the yellow pages!<br />
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Also veneers are more of a temporary transition treatment primarily for aesthetic purposes, caps are the long term treatment recommendation. Veneers chip almost as easily because the enamel and dentin beneath them are abnormal and weak, my husband's veneers in high school only lasted 2 years before they chipped, he kept having to get them fixed. Plus caps/crowns are necessary for the molars because they need to maintain the bite structure--treatment is more about function and longevity of the teeth/mouth unit than about appearance!<br />
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Good luck!

I'm 28 and living with DI. I had "caps" when I was a child. I'm thinking that was an 80's treatment not used today. They were silver, and not much prettier than my brown/grey teeth.<br />
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When I was in 6th grade I had my teeth bonded, but htey kept chipping. In 9th grade I had porcelain veneers put on the front top & bottom, which I still have. They have held up great.<br />
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If his is anything like mine, I suffered from absessed teeth my whole life. I've had so many out between baby teeth & adult. (Mostly back teeth). <br />
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Now as an adult I've had the back teeth done in dental implants (8 teeth). It's very expensive. I managed to find a local university that will do it. Instead of $40,000 it cost $14,000.00. It was final year dental students supervised by professors, and it went well. I really like them.<br />
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Just be prepared if his is like mine, it will be expensive his whole life. My worst times were when I was going through puberty, and I lost alot of teeth then. Must have been the hormones, and then again in my early 20's. <br />
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Feel free to ask any questions! <br />
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PS: I'm from NS, Canada.

Hello!<br />
I also have a three year old boy that has DI as well as myself having this genetic disoder. I have been told that my sons baby teeth need to fall out first. Once all of this teeth has come in he can get his teeth bonded. It's almost like having your teeth painted white. When his teeth are fully matured he can get veneers. When his adult teeth come in please make sure he doesn't eat hard candy. If his teeth are anything like mine they are strong, but weak at the same time. I was eating skittles at age 10 and my tooth completely chipped. Once your teeth chip they need to pull the whole tooth out and then he would need to get a bridge. It's not pretty. Now that's my experience, but I'm sure it's pretty much the same because of our condition. What state do you live in?