Hi, Kerin --- Thank you for your response to my posting. It's good to find others with this problem. I think your idea of getting a petition together is a good one. In a few weeks, I'll be getting together with my brothers and their families. I will certainly bring up your idea and see how they feel about it. You're quite right -- dental insurance, for those of us who have it, is very poor in what it covers. People wonder why others with bad teeth don't have them fixed. While I think it's true that some are afraid of the dentist, I'm willing to bet that it's because most can't afford to get the work done with or without insurance. Most dentists don't understand dentinogenesis imperfecta at all. If they did, then they would understand that trying to repair broken teeth is an act of futility. The few dentists who understand and recognize the condition that I've been to, use me as show-and-tell for the hygenists and any dental students who happen to be around. I don't mind--glad to contribute to their dental education!
I've never been able to understand why health insurance covers the physical body so well but not dental and mental health. No one should have to suffer through dental problems due to poor dental coverage or none at all.

Hi
I know this post is almost 3 years old, hopefully someone will reply back. My husband has dentinogenesis imperfecta and our son has inherited this dental problem as well. Our son is 3 years old and has to have 8 crowns put on his teeth. We have no dental insurance and we tried billing our medical insurance but of course they denied it because they said it affects his teeth only and if it was TMJ or affecting his jaw they may consider it. We do have a dental discount card which saves us some money. I guess it is frustrating as a mother to know what my son will have to endure and the cost financially for this genetic disorder. But mostly the fact that insurance companies will not treat this. My husband has has problems even when he had dental insurance because any work he needs done they consider to be cosmetic. I would definitely sign a petition to have more research done on this and to help others affected by this to get the proper treatment and coverage they deserve!!! I hope to hear from someone soon!!!
Thanks

I am 26 and have Dentinogenesis Imperfecta. My mother, sister, and nephew also have it. It has been a pain since I was born. When I was little they put caps on all of my teeth except for the front four. They didn't seem to help at all. And growing up my teeth were contantly breaking and hurting. I also would get abscesses in my mouth all the time. My mother took OsCal while pregnant with my sister and hers seem to be a little better than mine, although I am not sure if it is because of the OsCal or not. But I am currently trying to get pregnant right now, so I am taking it just in case. I got full mouth extractions almost a year ago and have temporary dentures currently. I am waiting to get the full implants. My insurance of course doesn't cover it, but my husbands dental covers 50% of implants, so that should help. It is still an outrageous amount of money. I wish there was a way to prevent this. If anyone knows of anything it would be a great help. I don't know where to turn anymore because it so rare no one really knows what to do. Thanks!!

I agree with you, we need to do something to gain support for this rare disease. Both my twins have it and I have no experience with dealing with it. I'm trying to find out what treatment to do with them and it seems that I have not been able to find a dentist that doesn't have to look it up first to be able to give me information on it. It's going to be VERY expensive for treatment and something needs to be done to insure that insurance companies help us out more. You may private message me if you want.

I have dentinogenesis imperfecta and so does one of my sons. All my teeth have been crowned and my son had his done at two years to save his baby teeth. He had a spreader in the roof of his mouth and currently has braces on his upper teeth. After braces come off, the plan is to crown all his teeth. I love how we have dental insurance, but they will only pay 50% for one crown a year. It would take almost three decades at that rate. I would be happy to sign a petition.

I am at least the 5th generation with this disease. I elected to have my teeth pulled, but now I am facing sinus and bone augmentation to replace bone loss. The good news is I found a medical code that may cover the expenses through ICD-9 code 520.5 Hereditary disturbances in tooth structure, not elsewhere classified (this specifically lists dentinogenis imperfecta. If only someone had shared this with my 20 years ago, I could have saved so much money and aggravation.

If insurance doesn't cover costs, Dr. Zhang in Anaheim, CA is beyond affordable when it came to implants. I spent over a year researching and visiting Mexico, and Dr. Zhang was the most affordable and did great work.

Good luck!

I have been trying to find a support group for this condition with no success. Therefore, I started one on face book. You can go to https://www.facebook.com/#!/profile.php?id=100003680083491


Hopefully we can support each other, exchange ideas and information on how best to treat this and help our children afflicted with it.

According to the geneticist I saw last month, she stated that it is an autosomal dominant disorder, therefore if one of the parents have it, there is a 50% chcnce of passing it on to their children. If neither parent has it, then BOTH parents had to have a recessive gene.

Thanks so much for sharing. I am at least a 5th generation victim of Dentinogeneis Imperfecta from WI. I refused to cap or veneer any of my teeth, because it just hasn't worked for any of my relatives. I compare it to a flat tire. You can only fix the tire so many times before it just doesn't work anymore. That is my personal philosophy on caps and veneers.

Like everyone else, this has been horrible. I was fortunate to get upper dentures when I as 20, but now that I'm in my late 30's the bone is deteriorating, and I need implants.

I'm also trying to deal with my lower teeth. The center front tooth broke two years ago and I had it removed. Now I have a gaping gap and grey teeth to deal with. I also have two caps in the back of my mouth. They both need to be extracted. I'm also experiencing a huge increase in cavities in the last year. I knew I was on "borrowed" time with these teeth, and now the time has come where I have to do something.

I've spent the last six months researching options in Mexico and southern CA. Some dentists refuse to remove the teeth, others want a "snap on smile," others want to pull a few teeth and place bridges in my lower ridge, another dentists wants to seal the teeth to prevent more ware, and most dentists want to cap the teeth. I've been in some pretty heated battles with some dentists that keep telling me my teeth are in great condition. Really?? Where did you go to school and what experience do you have with these teeth?

I've found several dentists that will extract my bottom teeth. I can get an All on Four ($27k) which is four implants with a fixed bridge, partial bridge that snaps on ($13k), or I can get six implants with a fixed denture ($8K). The Mexico dentist offered 8 implants with a bridge between each ($14k).

I haven't even begun the battle with insurance. I have pretty good insurance, but they will only cover the costs if it is medically required. My sister did have some success with her insurance company, but I think it really takes a creative dentist.

Fortunately, my children did not inherit my teeth. My niece wasn't as fortunate. Does anyone know of anyone that has inherited the teeth if their parents don't have it. I've been told that my children will never pass this gene on, is that true? Or is this just wishful thinking?

I am including a link to the best article I've read so far involving these teeth:

http://www.aapd.org/assets/1/25/Sapir-23-03.pdf


I'm on board if anyone wants to pursue this issue further.

Good luck and just keep telling yourself there is always someone worse off then us:)