Dentinogenesis imperfecta

[Deleted User] · June 2010

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shopgirl_07 · June 2010

Oh, poor girl. She's a beauty though!

AnneUCSB · June 2010

She is SOOO cute. And that hair- to die for!

I have never heard of Dentinogenesis imperfecta. I have worked with babies in the NICU who have Osteogenesis Imperfecta, so I assume this is similar, but affects the teeth in your and your DD's case? I am sorry you have to deal with that

She is gorgeous and I am sure people will notice her adorable face before anything else! HUGS.

JOEBunny · June 2010

I am sorry. Health Insurance won't cover it any of it? I had to have some fillings replaced from when I was a child and I flew to San Francisco because it was $1,500 cheaper to go see my dentist Uncle than to pay the regular dentist, even with insurance.

Wishing you a dentist uncle or cousin and your DD an experience as painless as possible. (I had a dental problem in high school that required surgery and lasted for a year before they were all done. Lets just say, I have never been so skinny, very painful, any mouth work.)

Yodajo · June 2010

She is such a beauty! Look at those curls! To die for!

I'm sorry you both have to deal with this problem. I know how expensive and involved it is. On the bright side for her, she has an experienced, wonderful advocate in you who knows first hand what she is dealing with.

I still can't get over her gorgeous hair!

championmama · June 2010

She's precious! I hate that she has to look forward to so much dental work. I think that may be what a child that I used to sit for has. I babysat her when I was in high school. She was born in 1991 and is now a 2nd year nsg student. From what I remember her Mom telling me, it also affected her hair and nail growth? She also explained the genetics involved and how it's passed on.

Jayde's mother's brother (her uncle) had it but Tina didn't.

One of our news anchors locally wrote a children's book about her called "the hairdresser's baby" b/c Tina is a hairdresser. I can't remember what her disease was called, but the teeth thing is what is making me think it's similar.

Laura1145 · November 2010

Hello!

What a cutie pie she is!! I am actually going through this right now with my son. I have this as well. My dad had it, my oldest sister did not, but my other sister and myself do. It is for sure something that is tough to deal with, and a lot of care/ work to put into!! my neices and nephews were not effected, which we were surly concerned about. My son however is 10 months old and cut his first two teeth two weekss ago. My fears are coming true sadly. My neices dentist and my pediatrician both said that they are pretty sure he has it. I feel so awful about it! no parent wants their child to have anything wrong with them ya know.

I am glad i found someone to relate with about this topic though...

My father said that we shouldn't think of it as being the end of the world, because he is healthy smart walking and could be faced with many other terrible things! I guess he is right.

how is it going for you and her so far?

Laura

carrie101376 · December 2010

2 of my 3 children also have DGI type II, Inherited it from their dad! I don't have the personal experience with it, but agree that it is "sucky" and going to get REALLY expensive in the next few years!

I had a really difficult time with people, including nurses and doctors who would assume it was baby bottle mouth! THen the few who you explain the condition to who act like you are lying because they have never heard of it before!

My daughter is 9 and lucky we go to a small private school, where I teach (2nd grade). When my daughter was in my class one day we were discussing health issues and someone commented about her teeth, with her permission I explained (on a 7-8 year old level) why her teeth were the way they were and what will have to happen to take care of them. It really has seemed to help her and it is only the kids that are new who bug her about it. She is quite shy so one of her friends will usually pipe up and explain to the kid.

I also had my son and a similar discussion took place but more so because he was being made fun of at recess. I think he had more of an issue because his mouth was so tiny they couldn't get the composite resin caps on his lower central incisors so they were just plain stainless, more noticeable. Anyway, it mostly has worked out!

My husband is 1 of 7 siblings and 5 of the 7 have DGI, of the 13 cousins who could have inherited it 7 have it, so my kids aren't alone family wise. I hope you and your little one have something like that!

Just out of curiosity are you of Scandinavian decent? My husband gets it through his Norwegian background.

I wish these types of blogs were around 8 years ago, it would have been nice to have someone else to relate to.

Good luck!

singforlove11 · March 2011

I feel for you. My fiance has this too and had his baby teeth capped in silver and constantly was made fun of. I recently just put a name to it. His whole family has it too on his mom's side and it's really bad. Luckily, my fiance's adult teeth aren't as bad. We unfortunately just found out that our daughter, Carly, who will be one on Friday, has it too. She she half of her two bottom teeth in and we can see the discoloration already. Its so sad! Good luck with everything and keep us updated!

Jackie

mtbutterflyrose@hotmail.com · July 2011

Amanimals14:

I was taking pictures of Hannah today and realized this one is a really great shot of what her teeth look like. People are starting to comment...which I knew was going to happen at some point. I know, I know...it could totally be worse than just teeth. But I have this disorder as well and know how hard it was being made fun of all the time when I was growing up. Just sucky. Doesn't help that we'll be putting well over 50k into her mouth in just the next 15 years. Sorry..just venting. *sigh*

This also runs in my family. My grandpa had it; passed it to my mom and aunt. My sister didnt get it but I did

now i have 3 girls and 2 of them have it. Kids are so cruel when you have a child with this. when they are little other kids come up and say things like why do your teeth look that way. or other parents would say, why didnt you take better care of your childs teeth. they just dont understand. I fortunatly at age 31 still have all of my teeth minus wisdom of course :-) it took lots of pain and money but here i am today with my teeth, or should i say capped teeth. my oldest little one is 10, and she has had tons of dental work done and hers look a bit better then my teeth did. the dentist said it was because of the floride ive been giving her since she was 4 months old that made them better. This condition is awful!! its awful to have this for yourself but for me it was worse the day I found out I GAVE THIS to my children

(. Now my new baby I think has it also, and it makes me sooo sad; but on the other hand at least my new baby have others in our house with the same issue. my mom lost all of her teeth by age 15, so i had to experience all of the dental work myself with no one to relate to with it. Advice I can say is LOTS of floride it truly does the trick! And Lamination when the teasing becomes too much for your little girl. My 10 year old is going to have her front 6 done this year because of the teasing. Its not a perm fix but it will help with self esteem. If you ever want to talk my email is mtbutterflyrose@hotmail.com.

epsitolarian · March 2014

I know this is an old thread, but thought I would chime in as someone else with DI. Has anyone talked to you about a full over-denture? It was the solution suggested by top dentists at the University of Maryland School of Dentistry, and it was life changing for me. The caps were awful and we found out that all of my capped teeth decayed faster than the rest of my teeth. That might be due to the fact that I have a more severe form of DI (type 3), but I've heard others with DI say the same.

A full over-denture is molded to fit over the natural teeth, and a good prosthedontist (dentist who makes prosthetic teeth) can make a denture that looks completely natural. I've worn over-dentures for almost two decades now and people are absolutely floored when they find out my teeth are fake. The dentures ended the questions, bullying, ostracism, and rude staring. They also protected my teeth from wear, and allowed me to keep very good oral hygiene. I'm 30 years-old and will be having the rest of my natural teeth removed so we can move forward with implant-supported dentures. I can't tell you how excited I am to be done with my natural teeth

I have to disagree with mtbuttterflyrose - flouride was no help to me. Again, it might be because my case is more severe than what she is familiar with. We tried flouride this and flouride that. No change in the rate of wear.

Whatever you do, stay strong. Don't allow anyone - even a big shot dentist - convince you that rapid decay and wear is your fault or your daughter's fault. Even abscesses happen when you do everything right, and I have the research paper from geneticists at Johns Hopkins University that backs me up. That same paper also stated that every case of DI is different - even within the same family - and one person's teeth may fall apart faster than another's for no reason.

Your daughter is beautiful. Her smile and her demeanor remind me so much of myself at her age. I pray that the road before you would be full of kind people and wise doctors. Hope all goes well.

KaramelSutra · March 2014

Extremely confused as to why you dug an almost 4yr old thread up...

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