I am trying to get information out about this disorder, and am hoping to make it onto the doctors with my story to get the information out to more people. They talk all the time about how oral and dental health is so important to overall health. This disorder primarily effects the teeth, primary and secondary teeth, and usually results in the loss of all teeth in early adulthood. It's a dominant genetic disorder that causes discolouration (pretty sever, no way it can be overlooked, in our family it's pearlescent gray teeth, but I hear it can be brown to amber as well). As a child myself no one knew what should be done, so things happened in a way that lead to more damage then needed for me (as well as over a year where I wasn't allowed any sweets as a 5 year old). Several dentists I have seen over the years have either never heard of or deny the existance of this disorder. At this point now I am 32, toothless, and have no likelihood of getting teeth. I have dentures, but I can't wear them because I don't have any soft tissue in my gums, so it feels about like trying to walk around all day with a brink strapped to your shin. Not all people with this disorder lack soft tissue, my father wears dentures and has for around 40 years now.
My daughter is almost three, she has just gotten her last tooth fully in, and so now when she sees her dentist next will need to be schedualled for crowning of all her back teeth (not sure exactly how many in all). Getting them crowned should prevent some of the problems I had, especially the wearing down of the teeth effecting jaw development. With my daughter we have actually managed to find a dentist who is experienced in this condition and knows what to do with her.
We have also seen a genetisist, but he hasn't been able to be as helpful as I hoped...apparently there is so little interest in this disorder that little is known for fact and no lab in the country will bother testing for it, and basically no one seems to care. He can't tell me if the joint issues I suffer from are part of this disorder, or not. This disorder is linked to Osteogenesis Imperfecta (OI) also known as fragile bone disorder, and may include other side effects of OI. We know that there is no OI in our family at this point. Connective tissue and other areas though may be effected.
The major issue we have with this is insurance related (What a shock right...insurance wanting to avoid paying). We have pretty good medical and dental covereage generally. The dental will happily pay for the care for this, but has a $1200 annual cap, and will only pay a share of some of the work. Our medical insurance states that this is dental not medical and therefor not their job to pay. Every doctor I have seen; which includes my doctor, my daughter's doctor, a cosmetic dentist, an oral surgeon, my daughter's dentist and the genetisist, say that this is a medical condition and should be covered, but since no one knows about this disorder, (even though it is said to effect 1 in 7000 kids each year)and no one cares about what they don't know about, the insurance can do what they want. I am getting worried that the effects on my appearance are permanant and won't be fixed even if I get teeth (sunken in around the mouth and all, thinning lips....you know old lady mouth I call it). It would be nice though to bite into an apple, eat unsoggy cereal, go to a resteraunt for the firs time without worrying I won't be able to eat anything, etc.
Please comment if you want to learn more about this disorder.
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I have emailed them, and am hoping to get a responce, honestly although there are other setting to get things like this out, other TV shows and such, I think that this one would be the best one for it. I mean it's all about this kind of thing, but has a wider range of viewers then most medical shows in general.
Star76,
Hi, I have never heard of this. I was diagnosed with Lupus, which causes dry mouth, which causes tooth decay, I am 35 and have very few teeth that don't have crowns, root canals or at the very least fillings. My dentist says my tooth problems are due to my medical disorder, but that doesn't matter to the insurance companies, so I feel your pain. My daughter at 5 years old already needed a root canal, so I worry about my kids also. I have spent $25,000 in dental costs in the last 3 years and still need $7000 more. And that is just to make them functional, not pretty. I have lost 3 teeth completely, 2 of them were replaced by a bridge, the other is in the very rear of my mouth and nothing can be done for it. (well maybe an implant, but they don't know if it would even hold). I'd love to learn more about this disorder, I hope they do a show.
Michele
Your genetist is right it is linked to OI. I can say this confidently, as I suffer from the same thing as a result of my OI. Most dentists, don't know much about it, and my dentist actually recommended that I go to a orthodontist because they are more specialized. In the mean time, with your daughter try ACT mouth wash, it restores tooth enamel, which will break down as a result of the collagen issues associated with both of these conditions. I don't know how much you know about OI, but OI is a connective tissue disorder that causes imperfect formation of the bones, but also the teeth in most cases. It is the result of a collagen mutation. Collage in is all connective tissue which is everything from tendons and ligaments to cartilage, to bones and teeth. You can also try giving your daughter more vitamin D, and calcium. Kids with conditions often need more than a regular kid. I know I take 100,000 IU of Vitamin D a week when the recommended is 7,000 IU. Anyways if you have any more questions leave me a message or comment. I will look up more info for you. You may also look into seeing a genetist as Mayo clinic. I know you already have seen a genetist, but the genetists, there are nothing but helpfull in finding you the help you need once they have diagnosed the condition or someone else has. I really think they may be able to help your daughter. They have made a signifcant difference in my life.
Brianna
I also have dentinogenisis imperfecta. I come from a very large family, and as expected about half of us have this conditon! Our baby daughter just got her first tooth, and she has DI as well.
I am very sorry to hear about all of the complications you've had with DI. I was not aware that the condition caused problems with the soft tissue in the mouth as well. Are dental implants an option for you at all?
I'm excited to meet another person with DI, outside of my own family. I hope that we can be a support to each other in the future!
Implants are an option, but I can't afford them, the implanted bridge thing is $30,000 and my insurance won't pay it. Apparently DI can cause a lot of issues that no one in my famiy knew about, such as blue sclera (whites of the eyes) which I have...mine are very pale blue so it isn't as noticible as it can be. It may also be the cause of my joint problems...my daughter's geneticist says that is likely, but it is also possible I may have another genetic disorder that explains the other problems. I have never met anyone outside my family with this disorder either, although the reports I have say 1/7000 has it. My daughter's dentist has seen a dozen other cases in his career, but they werne't all from different families, not sure how many families. It is nice to meet someone else who has it who isn't family too.
I know how expensive dental implants are. I've paid for 2 that have failed so far. My oral surgeon believes this is due my DI, but my mom and my aunt have had implants with no problems. I'm hoping that other areas of my jaw bones will heal around the implants in the future... It's really unfortunate that insurance doesn't cover the necessary dental care due to our condition. My cousin (who doesn't have DI) knocked his front teeth out while driving drunk, and insurance paid for HIS implants. It's just not right! I hope it is one day financially possible for you to have implants placed as well!
It's great that you've found a dentist for your daughter who has worked with DI before. I'm currently searching for a pediatric dentist for my daughter. I want her to have every opportunity for dental care. What types of treatments have you had done, or discussed doing with your daughter's dentist? I'm planning to have my daughter's back teeth crowned, but I'd also like her to have bonding or some type of cosmetic treatment to improve the appearance of her teeth at an early age. I didn't have my teeth bonded until I was an adult, so I was always self-conscious about their abnormal appearance as a kid (mine are brown).
It's great to talk with you about this condition. I think the hardest part for me has been passing it on to my own daughter! I don't want her to have to go through some of the things I have. I'm sure you feel the same way!
Wow...I only just noticed, I wrote a fairly long reply to you last week...and apparently it didn't post. I fully agree the hardest part is knowing I passed it on, I don't understand fully why we women do that...I mean blame ourselves for something we have no control over at all, but we do. It even made me think I didn't want more children, at least for a little while. Right now though my biggest worry really is how I am going to answer her when she gets to be a little older and wants to know why I have no teeth. Right now she has only recently really realised I have none, but hasn't thought to ask why. I don't want her scared she is going to end up like me.
Right now we are only planning to crown her 6 year molars, her teeth are doing better then expected. I don't know if we will do anything cosmetic for her, I want to see how she does, if she starts having problems then we will. I was the only one of the three kids in my family with the disorder to really have problems. My little brother actually went to tryouts for modeling and everything, he was so confident even with his gray teeth *laughs*. I hope I can raise my daughter to be that confident...and we are already saving for her teeth to be removed and dentures or whatever is needed provided as young as possible. They have told me I might be in this condition in part because we waited so long to get my teeth all removed.
It really is nice to get to talk to someone...I really have a hard time believing the statistics...you are the first person I have met outside my family with this disorder, but the stats say it is 1/7000 ...that just sounds too common to me.
Ok....I made sure it saved this time.
Thanks so much for your reply. I took my daughter to see a pediatric dentist today, and we had a good consultation on all of the possible care she may need in the future. I feel much better about it now.
It's good to know that you've gotten over the feeling of not wanting to have more children. I feel so guilty for passing on this conditon that I've felt sure I could never have another child, although I had always wanted more. I also worry about the day that my daughter asks me about our condition. My only consolation is that I never once blamed my mom for passing the condition on to me. I also have a brother and sister who did great with having discolored teeth. I think I was especially sensitive to it because I was a shy and insecure child.
I also find it hard to believe that DI is that common, when I'd never met someone oustide my family with the disorder. I can think of over 20 people in my mom's immediate family alone who have DI, though, so maybe our family is the one who made the odds so big! ;)
I look forward to talking to you more in the future...
google genetic disorders that involve this dental issue. then go to a geneticist in a major city like boston or ny armed with your info. hopefully another geneticist will be able to come up with something. good luck.
I too have this disease and now at a point in my life (33 year old) where I have no other choice but to get implants if I want to eat normal food, such as a steak or apple, etc. Sadly you are correct; there isn’t enough information/research on this horrible disease that our family genes carry.
As I stated I am now attempting to have my medical & dental insurances help with the expense (mind you I can provide proof of over seven generations) but I am hearing the common phrase that is consider “cosmetic” procedure.
I am commenting today to tell you, you are not alone in this and wondering if this show ever did a segment on this horrible heredity disease we have?
Thank you so much for this post. My one year old twins (boy/girl) have this condition and I am having a tough time finding a dentist with first hand experience (not just google and books) with this condition. Each dentist gave me a different opinion. My regular dentist said not to traumatize them or put them through anesthesia for their baby teeth but rather to do bonding. A pediatric dentist said NOT TO wait and do full caps on all teeth, stainless on the back. The cost is $5,000 per child. I don't know what to do...I have no experience with this condition since I did not pass it on to them. Even though I didn't pass it on to them, I still feel bad that they will have to deal with this and perhaps pass it on to their children. I know there are worst things in life but we always want our kids to have the best. There are no support groups from what I could tell so I had to create one on facebook. If you have this condition or your child, please join the group so we can communicate further. https://www.facebook.com/profile.php?id=100003680083491&ref=ts It feels good to have finally run into others that have this. I don't feel as alone. Thank you!
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