Kid with possible amelogenesis imperfecta
April 1, 2022 9:37 AM Subscribe
Baby sky (3.5 yo) went to the dentist who is recommending 3 root canals and 9 crowns, and a couple fillings under general. There is a family history of amelogenesis imperfecta and we are trying to find someone with experience with this condition. Help? Chicagoland area for dental recs, but general info also appreciated.
Baby sky genetics for teeth aren't great. Her maternal grandmother has the condition, her uncle had a severe form in which his baby teeth came in black, pitted and small. I may or may not have a mild form of it but overall not terrible though my adult molars teeth were crowned as a preventative bc of this.
Kid did not drink from a bottle at night, has had regular teeth hygiene, uses toothpaste with floride. This is likely genetic and I'd like an approach that takes that into account.
We're would like someone with experience is treating this condition to see our kid, because 1)it is alot of work 2) requires general anesthesia due to her age and 3) won't actually strengthen or protect the other teeth she does have. 4) there's not much we can do about her other teeth than what we are already doing at home unless something perscription based is recommended, which is also why we want to speak to someone familiar with this.
She's experiencing some sensitivity so sooner than later is important. Lurie isn't taking new referrals, UI health dentistry pediatrics wants to do clinical review but the dentist were did bring her to isn't familiar with the condition so won't diagnosis it for the referral. Nobody mentions it in a Google search of condition + dentistry Chicago.
My mom's advice regarding treating my brother is literally 30 years old. My bother also has a severe reaction under general anesthesia so I'd rather not risk it unless it is our only route. Though obviously my 3.5 year old cannot handle all this work done conscious either.
My wife says this kind of recommended work can be common for kids with unlucky teeth, but I just want to make sure that I'm doing my due diligence prior to committing to all of this.
Baby sky genetics for teeth aren't great. Her maternal grandmother has the condition, her uncle had a severe form in which his baby teeth came in black, pitted and small. I may or may not have a mild form of it but overall not terrible though my adult molars teeth were crowned as a preventative bc of this.
Kid did not drink from a bottle at night, has had regular teeth hygiene, uses toothpaste with floride. This is likely genetic and I'd like an approach that takes that into account.
We're would like someone with experience is treating this condition to see our kid, because 1)it is alot of work 2) requires general anesthesia due to her age and 3) won't actually strengthen or protect the other teeth she does have. 4) there's not much we can do about her other teeth than what we are already doing at home unless something perscription based is recommended, which is also why we want to speak to someone familiar with this.
She's experiencing some sensitivity so sooner than later is important. Lurie isn't taking new referrals, UI health dentistry pediatrics wants to do clinical review but the dentist were did bring her to isn't familiar with the condition so won't diagnosis it for the referral. Nobody mentions it in a Google search of condition + dentistry Chicago.
My mom's advice regarding treating my brother is literally 30 years old. My bother also has a severe reaction under general anesthesia so I'd rather not risk it unless it is our only route. Though obviously my 3.5 year old cannot handle all this work done conscious either.
My wife says this kind of recommended work can be common for kids with unlucky teeth, but I just want to make sure that I'm doing my due diligence prior to committing to all of this.
AI is rare enough that yeah, not every community or dental school even the big ones, will have an expert.
There are varying degrees of severity, so the condition of Baby Sky's primary teeth does not necessarily predict the future of her permanent teeth, but it at least gives everyone a heads up that when the 6 yr molars begin to erupt they should be evaluated.
There is a big movement, aided by the covid restrictions, toward Minimally Invasive Dentistry in pediatrics.
There is a strong body of evidence that "drill and fill" offers no better outcomes, and can be more stressful for everyone involved, than using Silver Diamine Fluoride and Hall crowns to arrest and isolate lesions from the biofilm. That's kinda technical, I know, but the keyword is Minimally Invasive.
It may well be that BabySKy needs those pulpotomies (baby root canals) and those Stainless Steel Crowns (baby teeth preformed caps), but getting a 2nd opinion from someone versed in MID would be my advice. IN the right circumstances these procedures can be done without any anesthetic, let alone GA.
Silver Diamine Fluoride is an excellent desensitizer as well.
Resin Modified Glass Ionomer is the filling material of choice, because the glass leeches fluoride ions which strengthen the edges and surfaces around the fillings and the adjacent teeth. It is the adhesive in the Hall Crown technique as well.
posted by OHenryPacey at 10:16 AM on April 1, 2022 [11 favorites]
There are varying degrees of severity, so the condition of Baby Sky's primary teeth does not necessarily predict the future of her permanent teeth, but it at least gives everyone a heads up that when the 6 yr molars begin to erupt they should be evaluated.
There is a big movement, aided by the covid restrictions, toward Minimally Invasive Dentistry in pediatrics.
There is a strong body of evidence that "drill and fill" offers no better outcomes, and can be more stressful for everyone involved, than using Silver Diamine Fluoride and Hall crowns to arrest and isolate lesions from the biofilm. That's kinda technical, I know, but the keyword is Minimally Invasive.
It may well be that BabySKy needs those pulpotomies (baby root canals) and those Stainless Steel Crowns (baby teeth preformed caps), but getting a 2nd opinion from someone versed in MID would be my advice. IN the right circumstances these procedures can be done without any anesthetic, let alone GA.
Silver Diamine Fluoride is an excellent desensitizer as well.
Resin Modified Glass Ionomer is the filling material of choice, because the glass leeches fluoride ions which strengthen the edges and surfaces around the fillings and the adjacent teeth. It is the adhesive in the Hall Crown technique as well.
posted by OHenryPacey at 10:16 AM on April 1, 2022 [11 favorites]
Can Lurie refer you to any community dentists who perform procedures there? At the children’s hospital where I work, we have community specialists (including dentists) who have their own independent practices but who operate/perform procedures at the hospital when they need to do anything under general or more sedation than they can safely do in their offices. If you do end up needing to have the work done, having it done at a children’s hospital would give you the benefit of pediatric anesthesiologists and nurses, probably child life specialists, etc. which would probably make the process a little easier and hopefully ease your worries a little.
posted by MadamM at 12:47 PM on April 1, 2022
posted by MadamM at 12:47 PM on April 1, 2022
Response by poster: We asked about SDF and were told that the damage is to great to go that route from the initial dentist. Thank you for the information, it's is really really helpful though.
posted by AlexiaSky at 2:15 PM on April 1, 2022
posted by AlexiaSky at 2:15 PM on April 1, 2022
Response by poster: Brief update: She had a tooth crumble not too long after this post. We got a second opinion through word of mouth with a private dentist, estimates were about the same (she ended up needing work on almost every single one of her teeth). Because of the amount of work, out of network vs in network didn't really matter for us because the insurance will ultimately pay the same amount and the total costs were pretty much the same.
With the dentist, we're with we essentially have a plan to do work on every adult tooth as it comes in, so we can do some noninvasive work instead of chasing down problems. She will use prescription grade toothpaste going forward. Looks like for this condition at least, the procedures haven't changed much in 30 years.
Thank you all for your input! I appreciated it. Leaving this here for google purposes, maybe somebody will find it useful.
posted by AlexiaSky at 2:39 PM on April 18, 2022 [1 favorite]
With the dentist, we're with we essentially have a plan to do work on every adult tooth as it comes in, so we can do some noninvasive work instead of chasing down problems. She will use prescription grade toothpaste going forward. Looks like for this condition at least, the procedures haven't changed much in 30 years.
Thank you all for your input! I appreciated it. Leaving this here for google purposes, maybe somebody will find it useful.
posted by AlexiaSky at 2:39 PM on April 18, 2022 [1 favorite]
This thread is closed to new comments.
Since I can’t recommend any names, I will share that while the whole deal felt very stressful and worrisome in the planning stage, the procedure itself was as straightforward as could be, and now we don’t have to worry at all anymore about those teeth. (He got 4 crowns and a few fillings.)
posted by wyzewoman at 9:48 AM on April 1, 2022 [1 favorite]