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amelogenesis imperfecta, anyone?

13K views 19 replies 14 participants last post by  Smithdiana924 
#1 ·
Our dentist says that my 7-year old DS has a form of "amelogenesis imperfecta", which is a genetic defect that results in no enamel or poor enamel formation. (also maybe called enamel hypoplasia)

This started about 6 months ago, when his perm. teeth started coming in with yellow dicoloration on them. She noted that one of the molars coming in (it wasn't even all the way errupted) had a huge cavity in it & it had to be filled. We went back yesterday & 2 more molars (again, not even fully in yet) have enormous cavitites in the & the tops of those teeth are "crumbling".

She thought it might be genetic, or possibly due to an illness in his babyhood, when the 2nd teeth wre forming.

I am kind of freaking out--can't find much information about this & don't know what to expect for the future.

Anyone?????
 
#3 ·
Quote:

Originally Posted by JaneS
I really don't think it's genetic but mineral related, either a defiency in his diet or inability to absorb them. Does he have gut, digestive or poop issues?
I think you're making a blanket statement that doesn't reflect the whole truth when you say that cavities and enamel defects aren't related to genetics. There is more to it than diet and it's hurtful to mothers here who try their best to insure their children are eating healthy foods when you make claims like that. Haven't you ever wondered why only some children who eat crappy diets get cavities? Why don't they *all* get cavities if it's all about nutrition? Or haven't you ever wondered why some children who are fed very healthy diets develop cavities in spite of that? Well, that would be the genetic part, don't you think? Do you honestly believe that cavities have nothing to do with genetics at all? I'm a little flabbergasted by that.

I do believe nutrition has something to do with cavities, but there has to be a genetic component as well. Otherwise EVERY child who was fed a terrible diet would have cavities as young toddlers, but that isn't the case. My 4 nieces (2 on DH's side and 2 on my side) all have perfect teeth. But they are fed total crap diets. DH's nieces weren't breastfed at all - not one drop. My nieces were only breastfed 3 and 6 months, respectively. They all 4 drink soda, even though they are only 6, 4, 3 and 2 years old. They drink juice or pasteurized milk all day, they eat zero fish, they eat almost no fruits or vegetables. The 6-year-old refuses all vegetables and fruits in every form except for apple juice, apple sauce, french fries and mashed potatoes. They don't eat organic, they're constantly on antibiotics and tylenol for this or that.

So if it's all about nutrition, why don't they have cavities? Not a single cavity between the four of them. And their mothers also ate crap diets while pregnant - total crap. Yet my 21-month-old, who eats a WONDERFUL assortment of organic foods, fish and nothing more processed than the occasional bittersweet chocolate chip every now and then, has 4 cavities. And I didn't have a perfect diet during pregnancy, but it was much better than that of my nieces' mothers. Therefore, according to the "there is no genetic factor" theory, my 4 nieces should ALL have cavities. How do you explain that if there is no genetic component?

I'm not claiming that there is no nutritional component. Of course there is, but it HAS to be related to genetics as well. It has to. Even in your post you mention the possibility that it isn't a matter of not eating the proper foods, but possibly not absorbing all the minerals in those foods. THAT would be a genetic component. Why would only certain children not absorb minerals properly? Genetics. Why would only certain children fed crappy diets develop cavities, while the rest didn't? Genetics. Why would certain children fed wonderful diets develop cavities? Genetics. Admitting that there is a genetic factor at play does not in any way compete with the theory that nutrition is a factor as well. Some children are genetically susceptible to nutritional deficiencies. That's the only logical explanation.

I'm not trying to be argumentative with you, but I don't understand why you refuse to even entertain the possibility that some children are genetically more likely to develop cavities. Some children are genetically susceptible to nutritional deficiencies. For whatever reason, they have a harder time absorbing the nutrients necessary for proper tooth development. Either that or they have a harder time putting those nutrients to work on their teeth. Whatever it is, the two theories (genetic and nutrition) do not compete - they complement each other.

And to the OP, my dd also has hypoplastic enamel, but only on some of her teeth. Those two teeth have cavities, as do the two in between them. It was very unlucky in that the 4 front are the most likely to develop cavities anyway, so this certainly didn't help. I'm sorry you're going through this! I can't imagine how stressful it must be to have this problem on ALL of the teeth! I'm glad you seem to have a good dentist and hope you get it all worked out soon.
 
#4 ·
Quote:

Originally Posted by JaneS
I really don't think it's genetic but mineral related, either a defiency in his diet or inability to absorb them. Does he have gut, digestive or poop issues?

Please see "Curing Cavities with Nutrition"
No--no digestive problems at all. He is actually very healthy--rarely even gets a cold.

A mineral-related problem may or may not be exacerbating the condition, but for the record, if I assume the diagnosis is correct, then amelogenisis imperfecta actually is genetic----

Quote:
Amelogenesis Imperfecta is a rare inherited disorder characterized by brown discoloration of the teeth, resulting from a lack calcium (hypocalcification) or underdevelopment (hypoplasia) of the hard outer covering of teeth (enamel). The disorder is divided into numerous forms based on the severity of the enamel defect (e.g., complete absence [agenesis], underdevelopment, etc.). Individuals with Amelogenesis Imperfecta may be prone to early tooth loss and/or disease of the structures that surround and support the teeth (periodontal disease). Amelogenesis Imperfecta may be inherited as an X-linked, autosomal dominant, or autosomal recessive genetic trait, depending on the form present.
And purely FTR, he doesn't drink juice or soda, and only has sweets occasionally. Never had a bottle--nursed for 2 years+---all those good things.
I don't claim that his diet is sugar-free, or that his brushing habits are top notch, but . . . as I said, the affected teeth weren't even fully erupted yet--i.e, they came through the gums without enamel---so, I don't think that it was necessarily diet-related in this case. His baby teeth were perfect--this has only been a problem with the secondary teeth. The dentist did, however, think she can see a small spot on my 3 year old DS's front baby tooth.


Quote:

Originally Posted by Plummeting
And to the OP, my dd also has hypoplastic enamel, but only on some of her teeth. Those two teeth have cavities, as do the two in between them. It was very unlucky in that the 4 front are the most likely to develop cavities anyway, so this certainly didn't help. I'm sorry you're going through this! I can't imagine how stressful it must be to have this problem on ALL of the teeth! I'm glad you seem to have a good dentist and hope you get it all worked out soon.
Thanks for the support & information-it is scary, but nice to know I am not alone!!

Still looking for some more websites, etc--the internet can get a tad overwhelming!!
 
#5 ·
Plummeting,

Read the thread I started "Curing Cavities with Nutrition" and read Weston Price's book of research into native diets, "Nutrition and Physical Degeneration" and then you'll know exactly where I'm coming from.

It's not fruits and vegetables, it's high minerals and the correct fats including high amounts of vitamins A and D. None of which is present in modern healthy diets unless specifically planned.

And yes, parents can pass on their poor teeth by passing on their nutrient deficiencies to their offspring, but it's not genetic in the sense that we have no control over it.
 
#6 ·
JaneS, I've read the thread. I don't think Weston Price is the be all and end all of nutritionists. He has a few theories that don't jive well with me or even make any sense to me, but different strokes for different folks.


However, you're still not addressing the issue I'm presenting, which is why only CERTAIN children seem susceptible to tooth problems when presented with less than ideal diets. I understand it isn't about vitamins and I never said it was, so I'm not certain how that statement is relevant. A bad diet is a bad diet is a bad diet, regardless of whether I'm concerned about vitamin content, mineral content, fat content or how many different colors I eat in one day. So my question to you is: Regardless of what missing factors it is that causes tooth problems, why is it that only certain children's teeth will be affected when they don't get those factors?

You stated in your own post that the modern diet is *always* deficient in these factors unless one carefully plans her diet with this information in mind. Therefore, shouldn't ALL children whose mothers don't take this into account develop cavities and terrible teeth? If there is no other factor in play than the nutritional one, why don't my nieces have cavities? Their mothers didn't eat healthy diets while pregnant - not by a long shot. My sister thought a healthy diet was a salad made with iceberg lettuce and a couple of tomatoes and cucumbers for lunch, a few chicken fingers with french fries for dinner and a bag of M&M's at night. She worked in a restaurant and this is exactly what she ate 5 days a week during both of her pregnancies. If bad teeth are "inherited" due to mineral deficiencies during pregnancy, her kids should have bad teeth, but they don't. And if bad teeth are created by the diet they have after birth, they should have terrible teeth, but they don't. Their teeth are PERFECT.

I have been healthier than my sister my entire life. There has never been a point in time when she could have claimed to have healthier habits than me. Never. But her kids have perfect teeth and mine has terrible teeth. Please explain that to me in terms of your belief that there is no genetic factor in play.

Again, I'm not claiming that we don't need to change our diets enough to at least closely resemble what Price recommends. I'm not claiming that at all. What I am claiming is that some children are more susceptible to suffering the ill effects of an imperfect diet. If we all had a perfect diet, then maybe we'd all have perfect teeth, but that doesn't explain why only some of us have bad teeth on our imperfect diet. Why do the others still have great teeth? What is the explanation, if the only reason for tooth problems is diet?

My husband's grandfather smoked 2 to 3 packs a day for literally 50 years before he quit. He never had problems with pneumonia, bronchitis, lingering colds, his heart. He never developed emphysema or lung cancer. He was and still is as healthy as a horse, but he stopped smoking when his doctor finally convinced him it would kill him one day and he knew he was getting old. My old boyfriend's grandmother got emphysema after smoking for only 30. Some famous supermodel has emphysema and she only smoked for a few years - she's incredibly young. There is a correlation between the two issues. Yes, smoking causes all of these horrible health problems, but not everyone is affected the same way. Obviously, some peopleare more genetically susceptible to the negative consequences of smoking. I think it's the same with improper diet. Some people can eat total crap their entire lives, after being born to a mother who ate total crap all throughout her life and pregnancy, and still have perfect teeth. Other people won't get so lucky, even when provided a much better dietary foundation.
 
#7 ·
Wow--

I know this is old, but we are still dealing with the problem. DS has had to have the two cavities filled & has gotten crowns, as well. Three dentists were consulted & all agreed on the diagnosis of AI. All 3 also concurred that it was genetic--that no nutritional influence--nor even dental hygiene habits played any role WHATSOEVER. I come to re-open/update this post on the off-chance that someone does a search for the condition & finds this thread---in the hopes that they will not go away with only one side of the story.

Maybe I was in a good mood during the original posting, or maybe I am just in a super-pi$$% mood now, but man--JaneS--you really burn me up. I don't often "fight back" about ANYTHING in my life, but I am really steamed.


Quote:

Originally Posted by JaneS View Post
It's not fruits and vegetables, it's high minerals and the correct fats including high amounts of vitamins A and D. None of which is present in modern healthy diets unless specifically planned.

And yes, parents can pass on their poor teeth by passing on their nutrient deficiencies to their offspring, but it's not genetic in the sense that we have no control over it.
What is your background in genetics, exactly? And when was the last time you looked in to the nutritional, genetic, or dental history of MY child's parents. What a load of crap your statements are. Without any direct knowledge, you place blame on me & my ignorance/neglect--all based on the ramblings of some dental snake-oil peddler.

I offer, from the National Institutes of Health (or do we not believe them, I suppose . . .):
Mutations in the AMELX, ENAM, and MMP20 genes cause amelogenesis imperfecta. The AMELX, ENAM, and MMP20 genes provide instructions for making proteins that are essential for normal tooth development. These proteins are involved in the formation of enamel, which is a hard, calcium-rich material that forms the protective outer layer of each tooth. Mutations in any of these genes alter the structure of these proteins or prevent the genes from making any protein at all. As a result, tooth enamel is abnormally thin or soft and may have a yellow or brown color. Teeth with defective enamel are weak and easily damaged. Researchers are looking for mutations in other genes that may also cause amelogenesis imperfecta.

Amelogenesis imperfecta can have different inheritance patterns depending on the gene that is altered. Most cases are caused by mutations in the ENAM gene and are inherited in an autosomal dominant pattern. This type of inheritance means one copy of the altered gene in each cell is sufficient to cause the disorder.

Amelogenesis imperfecta is also inherited in an autosomal recessive pattern; this form of the disorder can result from mutations in the ENAM or MMP20 gene. Autosomal recessive inheritance means two copies of the gene in each cell are altered.

About 5 percent of amelogenesis imperfecta cases are caused by mutations in the AMELX gene and are inherited in an X-linked pattern. A condition is considered X-linked if the mutated gene that causes the disorder is located on the X chromosome, one of the two sex chromosomes. In most cases, males with an X-linked form of this condition experience more severe dental abnormalities than affected females.

Other cases of this condition result from new gene mutations and occur in people with no history of the disorder in their family.


And my poor eating habits during pregnancy---my crappy nutritional management of my child plays into this how? You know nothing about this subject, obviously-so please stick to the cavity/nutrition forum where you can be nurtured and supported as you lead flocks of children away from the cavity badlands inhabited by those like me.
 
#8 ·
I'm sorry about your babe. Is there anything that they can do? Is there any kind of fake enamel that can be placed before the need for crowns? My boy has serious tooth decay in his upper four teeth, but I don't think it's an enamel condition. I alternate between being fearful of his adult teeth, and hopeful for his adult teeth. I hate these tooth issues, it's so heart breaking in so many ways. I hope your boy is handling things well.
 
#9 ·
Our youngest son had two molars like that at exactly the same age, and they said that because I have an autosomal recessive immunodeficiency (dysgammaglobulinemia Janeway B) the problems with our son's teeth could be amelogenesis imperfecta as well.

She's also right. Subclinical infections, sometimes ones you don't even know about, can do that... and that's all we can put it down to with our son, because it was the only two he ever had. With him, the enamel crumbled last, so the first we knew of it, was almost hollow teeth.

He's had no problem since then, so the worst prognosis isn't necessarily the only prognosis. But part of that, was that it brought him up with a start. He'd cleaned his teeth, but not been flossing, or as diligent as he should have been round the back. Now he's a toothbrush flossing diligentee.

In your case, the diagnosis may, or may not be right. Time will tell.

With my immunodeficiency though, I found that minerals, vitamin C and changing my diet to include way more raw foods seemed to bridge some of the gaps for me, and make everything work a lot better.

I've found I have much higher requirements for certain minerals than "normal" people do, especially (but not exclusively) magnesium, which is interesting, because magnesium holds the calcium into bones. I have to take four times the recommended daily allowance of magnesium. I'm sure that with some genetic conditions, particularly if the effect is caused by methylation (epigenetics) the mineral absorption pathways aren't as secure as otherwise would be the case. In my case, my gut flora had also been damaged by years of antibiotics, until I became severely allergic to them, and I didn't know that you need decent gut flora to absorb minerals properly. It took a while to get the gut flora back working as it should. So for me, that was an issue.

I've got no genetic expertise, but have gone into it in some depth, because supposedly in order to survive, I'm supposed to have immunoglobulin monthly, but didn't want to do that, since it carries other risks for those with a dicey immune system.

I can't have antibiotics so in order for me to live, its my way, or the byway
. And sometimes we parents are the only ones who can provide the answers.

Certainly a whole lot of things have improved for me, including my bone density. An x-ray done by the dentist recently, showed that my "bone cap" was good and solid, supposedly unusual in someone my age and with my history. She was expecting to see none, and she and I were pleasantly surprised. And I've had very few fillings in the last few years, so that shows me that there has been an improvement. My mother had no teeth 15 years before the age I am now, so I'm doing okay... So two issues have improved.... my teeth are better, and I get far fewer infections than would be expected with someone with an autosomal recessive disorder.

So people with genetic conditions definitely do need to fine tune what they do, supplement wise, and might need more nutritional support than others.

Our son's problem brought us up with a start, because we'd assumed he was normal, though healing was slower with him, and had keloid tendencies. We now know, after tests done a couple of years ago (he's now 22) that his immune system is very like mine is, but not as bad. So I have to be careful with him, and though he hates it, every day he gets a huge helping of rabbit food
and a mineral supplement designed specifically for our soil deficiencies here. He grumbles and grizzles, but a lot of things have gone better with him since then.

Have you had a dental Xray done on him? What was his bone cap like? If its good, then it might be one of those things, but if its not so good, you might want to talk to someone about an ankle bone scan (or whatever they do in your country) to see if its affecting the body bones as well. That might not be such an issue now, as bone is so bendy in kids, but if the areas of bone that are solid aren't as dense as they might be, you might want to talk to someone about that, because that might cause problems later, once the growth plates close.

Just thinking ahead to questions you might want to research... because often what happens in teeth, happens in bones. I can understand your caution. Nothing more important then the scaffolding, coz we have to hang the rest of the furniture on it... or chew with it
 
#10 ·
Nutrition influences gene expression.

Quote:
Like the active form of vitamin A, the active form of vitamin D-called calcitriol-is a hormone.5 Although its structure is similar to that of the steroid hormones, vitamin D is classified as a secosteroid because one of its carbon rings is split open.6

Hormones can act in two ways: first, they can slip inside of a cell and enter the nucleus, where they bind to DNA and thereby direct a cell to turn the expression of a gene on, off, up or down; second, they can bind to a receptor on the outside of a cell membrane and thereby transmit a signal to the cell, telling it to change what it is doing in any number of ways. Activated vitamin D does both.5,7

Because of the similarities in the molecular nature of their interaction with genes, the receptors for activated vitamins A and D together with the receptor for thyroid hormone constitute a distinct family of hormone receptors.5

http://www.westonaprice.org/basicnut...-d-safety.html
 
#11 ·
IMO, yes nutrition influences gene expression, and making the nutritional connection with modern afflictions is a huge and very important piece of the puzzle, but not everything can be fixed or averted with nutritional measures. I'd venture to say that most problems are caused by multiple factors, nutrition is not the only and ultimate cause of every disorder and it can't fix everything.

BTW, many people seem to confuse Weston A. Price the man with what is said by the Weston A. Price Foundation, when in fact he died many years before the foundation was established and had nothing to do with it. He was a highly respected man in his day, not a snake oil salesman (in fact, his work seems as selfless as any science I've ever read about, and certainly more selfless than modern industry-funded research, which hardly deserves the name of science). Again IMO, there is sometimes a distinct disconnect between what Price found and wrote about and the sometimes absolutist and exclusionary statements made by representatives of the WAPF. So, I would encourage anyone interested in nutrition to read Price's work itself (Nutrition and Physical Degeneration, and assorted correspondence of his that's been published), rather than dismissing it because of something said by anyone involved with the WAPF.
 
#12 ·
I don't know the details, but I know someone who has this. I remember her teeth being "fixed" when we were kids, but whatever was on them came off. She has just recently been getting them fixed. She's having the work done at a local university, it would have cost $25,000 but they're doing it for $5,000. It is pretty rare, to my knowledge.

Michelle
 
#13 ·
Purely FTR:

Interestingly, I have another DS. He, like his brother (from the OP), had noticeably spectacular baby teeth. He just lost his first one, and the secondary tooth is coming up--I can see that it lacks enamel, exactly like his brother's. The ped. dentist suspected that DS#2 would have the same condition. Also, just learned that my older sister has this condition, as well.
 
#14 ·
There's a dentist at the University of NC, chapel hill who has done research in Amelogenesis Imperfecta, Dr. J. Timothy Wright, he's Professor and Chair of Department of Pediatric Dentistry

http://www.dent.unc.edu/search/peopl...MPLOYEEID=1975

looks like you have been going through this a while, so you are most likely up on what's been going on with this condition but you may want to take a look at the Complete CV or PHS398 Form links on that page for Dr. Wright, it has refrences to the articles he has written, might give you some information that you don't have already.

Dr. Wright sits on the advisory board for the NFED (National Foundation for Ectodermal Dysplasia http://nfed.org/ ) our little guy has a skin disorder and enamel defects and we went to see him, I really liked him but we were't able to use him for the work because insurance wouldn't pay out of state but it was nice having someone 'in the know' look at him and tell us what we were doing was the right thing or not.
 
#15 ·
I *think* my 18-month-old has this. Her lateral incisors are coming in yellow, and I have been doing some searching online, and it seems likely to me that this might be the cause. DH had a problem with his teeth as a youth-- said the dentist told him there was "no enamel" and they put a coating on them. Somehow he outgrew his problem (is that possible?) His teeth are fine now, albeit a little discolored.

I can find no reason for C's discoloration, other than the possibility of an inherited disorder like this.

We're seeing a pediatric dentist soon (referring GP said she has a more holistic outlook than most!) so if I get any information, I'll share it here.


Till then, I'm going to be force-feeding C bone broth every day, breastfeeding till she's in college, and brushing. I hope her adult teeth come in all right...
 
#16 ·
My 10 year old daughter has this. She has been to several doctors. Her teeth are really bad and we were told her mouth would cost us a mercedes! She uses a special kind of toothpaste and does everything we were told. We were told there isn't much to be done until her permanent teeth are fully grown in, around age 16. It is going to be really really hard for us to pay this, but I'm willing to do anything. I hate that she has to go through school like that. The kids pick on her sometimes, ask her if she brushes her teeth, etc. It has affected the way she smiles. When she takes pictures she won't show her teeth. It really saddens me, but she is a very beautiful spirit and very smart, top of her class. She understands what is going on and knows it will be fixed. AND IT IS INHERITED....her father had it!

I hope and pray that something can be done, even if just for temporary coverage...like cosmetic...but even then that's $$$$$$. I'm looking for any answers, anything about dental insurance, etc. Lord knows dental insurance when it comes to this sort of thing isn't worth a darn.
I'm just beside myself and need an answer or any advice. Don't listen to people who don't know a thing about what they are talking about!!

I hope this disease can be brought forth and get more coverage, since it is so rare but not life threatening. It takes an emotional toll on our children!! And I'm sure, like me, you want to do anything you can to try to get your child help. I wish everyone of you who are dealing with this gets the help you deserve.

If you have any advice please let me know. I found this board when I was googling about the disease. Thank you!!
 
#17 ·
i actually have Amelogenesis imperfecta and so far 2 of my sons have it aswell. i had all my teeth removed when i was 3years old and my perm teeth started to fall apart when i was about 17, this was mis diagnosed as poor oral hygine and wasnt till my 2nd son started complaining of pain in his gums it was diagnosed. unfortunatly there is no cure (as im sure you already know) but after months of research i have found out that dental implants can be done on the nhs with this condition, so for anyone suffering with this condition or worried about their childrens 2nd teeth it may be worth requesting a referal to a dental hospital. in the short term crowns are usually put in place 2 protect the ennamal, (stainless steel in first teeth and porcelin in perm teeth) depending on how affected the teeth are these may be enough, but as i said dental implants are available which would provide a more permanant fix.
 
#18 ·
Hi,

I have this dental disease and it is awful, mine also began with my second set of teeth. It is genetic and can start out of one peron, my daughter who is 3 has this in her baby teeth. The treatment is on going and crowns are best I have found and the comfort of the crowns is priceless. Anyone have any luck submitting this to medical insurance? This is recognized as a congenital disease under health care in new york. I am currently battling two heatlh care companies.
 
#19 ·
AI

Hello, I know this is an old thread but I thought I'd just inform you the information I've learned about AI throughout my life in case any of you have any questions. I have AI, and was diagnosed when I was five, so since then the doctors that my parents worked together with would meet and plan the next step needed to take for me. Since this is so rare, they formed a group of doctors to examine my teeth and try to fix it as much as they could to help me and my family. Although, it is very expensive, I live in Canada and the team of doctors helped me by covering 75% of it under something called 'cleft and lip palette' a part of the John McGiveney centre. I am now 21 years old, and just last year I had a portion of my teeth covered with veneers, which helped me a lot. Although, it is still upsetting that I receive cavities as much as I do even though I take care of my teeth. I have before and after photos if anyone would like to see and if anyone has any questions let me know because I would like to bring more awareness to this disease and help people struggling with it.

email me at kryzak@uwindsor.ca

thank-you!
 
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