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Ada is undergoing her second surgery—or second time being put under general anesthesia today, about one month after the turned three. She has officially surpassed the number of times Payman or I have had a surgery.
The first time she was 22 months old and we only decided to do the dental surgery route because she needed that and an endoscopy might be telling about the situation of her distraught little tummy. She wasn’t eating gluten at the time, though she was most definitely reacting to cross contamination at the time, and she did not have any gut damage, or esophagus damage either.
On the teeth side of things, she ended up with four crowns on her molars, three pulpotomies (root canals) with resin filling over top and one tooth with resin filling but no pulpotomy.
Since that day, 14 months ago, Ada has broken two of her resin fillings (it seems they just broke off—there was no noticeable injury and erupted four more molars. Her canines have decently deep cavities that have been scraped away (and I swear her tooth just crumbles) at least twice.
I remember going back for an appointment last September and the dentist said it looked liked we were keeping them very clean. We brush and wipe them with a cloth, but admittedly, it is very difficult to floss her.
Then we went back in November and all that was out the window. Her teeth were getting worse and worse looking, and she had food in stuck in them… a huge chunk of something she ate for breakfast, which the dentist insisted was there from the night before. We do not agree. I just don’t think its possible I missed a chuck of food *that* size.
Anyhow, the dentist’s unyielding opinion is that we don’t brush her teeth well enough and that is the problem. She repeats over and over—though *I* no longer bring it up, that there are no enamel defects in her teeth and they are extremely rare. I could add, though I’ve stopped, that they are not rare among the special population of those with celiac disease.
This morning, as we prepped for surgery, she told us that she wants to be “aggressive” with her treatment—which I actually agree with b/c I don’t want to be here a third time and have resigned myself to the fact that she has metals in her body—and do as many crowns as we need, after she takes x-rays and determines how bad the decay is.
But she always takes it one step too far, and Payman sometimes thinks I’m being too sensitive and sometimes agrees with how I feel.
Minutes before I have to sign a paper that says I understand the risks of anesthesia—including brain damage and death—she says we must be aggressive because she isn’t convinced that Payman and I will be able to keep her teeth clean enough to keep this from happening again.
Thanks, lady, really. I am risking my child’s life and putting her body through something because I’m just not able to brush as well as everybody else.
Okay. Maybe I’m touchy, but damn. She also said that Ada’s teeth have been dirty every time we’ve ever come in, so could we possibly “really” commit to the flossing this time? Payman makes the valid point that, as a doctor, if she *truly* believes this is all our fault, she has an obligation to drive home that point for Ada’s benefit.
It’s annoying that her memory of how dirty Ada’s teeth are at *each* visit and my memory of being told how I’m doing a good job at least once are different.
So an hour into the surgery she calls us in the waiting room, as we knew she would. Goods news—the decay in the newest molars is not as bad as suspected! She tells Payman, but not me, that she doesn’t understand, after reviewing Ada’s records, how the molars have the decay they do. I swear, that’s all I’ve ever wanted anyone to say. *&^%
I guess she saw less decay than expected from the x-rays and must have reviewed her notes from each visit, notes that *should* show that her molars at least have been decently clean at most visits. I freakin’ scrub the hell out of them. But I am bad at flossing—apparently my largest downfall as a mother of a gluten-intolerance child. (I made a joke the other day that bad teeth is just another way gluten says “F You” to people).
Not that gluten has anything to do with it according to the dentist, who has never studied gastroenterology or celiac disease.
So back to the point. Sorry for the bitter tone and language of this post. I’m a little raw at the moment .
These molars are less than a year old, and coupled with Ada’s records, the dentist admitted she doesn’t understand why they are decaying the way they are.
However, good news is she is now suggesting no metal crowns on the molars! Just resin fillings, and maybe very close visits so that tiny cavities can be filled with resin without totally traumatizing Ada each dental visit. And, “Can you agree to really devote yourself to the flossing?” Yes, God woman. I’ll force her more than I do now. She does admit that she understands why it’s hard for us to do it—b/c Ada protests so much. She cries through brushing as it is.
She is losing all four front teeth, and getting crowns on the two canines. Those top four caused most of the problems… they have the root canals and the decay… they probably breed the bad bacteria. She’ll have a toothless little grin until she’s eight at least, but what else can we do?

Dental work feels drastic to me as a reason to put your child under. But with all of Payman’s dental work the past year, even as an adult, he is developing a deep-seated dread of dental work, and we don’t want to do that to her.
Okay—rant over! A few more hours and I’ll see my swollen lipped little angel!

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Today Ada had a check up with her dentist. She is 2 1/2 now, but before she turned two she had extensive dental work. There are other posts discussing those details and her surgery to be put under.

Let me just say that it is not my favorite experience in life to hold her and stare at her teeth while the dentist uses her scraper-pick-thing that scrapes away plaque, normally. On Ada, it just scrapes away what should be the hard enamel of her teeth like chalk.

On a positive note, she sat amazingly still and poised this time. I’d say her dentist scraped away decaying enamel for a good 5 minutes or so, and if you’ve ever held down a two year old, that translates into what feels like 30 minutes.

The dentist was quite impressed, and I was surprised. The last visit she squirmed and cried and screamed. But there is a lot of new awareness and maturity and understanding that comes when a kid hits 2 1/2, at least in my experiance.

I told the dentist that it was very discouraging. Since her last visit, we have brushed and scrubbed those two teeth that give her the most problems, and to watch the dentist just chip away at all the decay that is still appearing, just kind of sucks. I told her if this was my first child I would feel like a negligent mother. But I know from Azita, whose teeth we treated the same way, that most of this is just that Ada is a special case.

She was more reassuring than she has been at any other appointment, saying that it isn’t that uncommon for a kid’s teeth to decay this way. And she seemed assured that we had really been trying to do everything we can to keep Ada’s teeth from eroding like a sand dune, whereas before she might have been wondering if we tried hard enough. Ada’s damage was so extensive… few kids have four silver crowns, three root canals and two fillings before age two.

She still doesn’t seem to deem the gluten connection much, but her other doctor at Duke– the celiac specialist– does. That seems to be the trend from other gluten intolerants I’ve heard from– that the dentists don’t know much about it, but the celiac people do.

Ada then threw up all over me. I have mentioned this several times before to this doctor– that she throws up at least once a week, and threw up extensively in her first 18 months of life, again due to her gluten issues or something related. She asked this time, after seeing it happen, if she does it when she is nervous. It seems like I remember someone else mentioning that a kid threw up for attention or because she was upset or something. Sigh. No, people. Kids throw up because something is wrong with their tummies or the food they are being fed! And there may be a few that do it for some emotional reasons, but I’m sure, the VAST majority are health related. Having a over-working gag reflex is something that several people I’ve met with food intolerances cope with.

I used to gag to even brush my teeth, each and every day. It went away in the past two years since being off gluten, along with my back pains while sleeping, majority of headaches and razor burn.

So I wonder.. is there some other food causing her gag reflex and weak teeth? Or would I be reading too much into it? I know it’s not normal to throw up once a week.

Then the dentist, now that she is actually paying attention to the vomiting that I’ve mentioned several times, says that sure, it could make the teeth weaker, and asks me if I’ve mentioned it to her pediatrician. YES I have LADY! You know, the other Duke specialist that was there the day of the dental surgery you performed sticking cameras down her throat and into her stomach?

Sigh. I don’t know why I feel so antagonistic towards some of her health professionals. They are all really pretty nice. It’s probably just an outgrowth of frustration when you can’t seem to control something that pains you about your kid. Atleast in another 2 1/2 years she’ll start losing these teeth. Maybe we’ll have better luck with her adult teeth, but if her dad is any indicator, I might not want to get my hopes up on that. He flosses and brushes and obssesses and has still had several root canals recently.

I had my first professional cleaning in 8 years last month and the dentist said I had less plaque than many people have at their 6 month cleaning. I’ll just be happy for me and Azita. And take her advice to scrub Ada’s teeth with dry gauze after brushing. And maybe between meals. Blah.

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I haven’t posted nearly as much on Ada and her symptoms from foods and her diet as I used to. Updates on her health, I guess, I used to do pretty regularly. There were times, actually about a year ago, where we ate a very limited diet, two proteins, a few veggies, a few types of fruit and no grains.

Now we are simply gluten, dairy, soy and non-organic corn free. Not a bad list at all, actually, once you are used to it and have good recipes by your side.

Two of her issues, though, have always failed to get better. They wax and wane but they don’t go away. She suffers from chronic constipation and has teeth that are extremely susceptible to decay.

She almost got to the point where she’d go every day when we were on our most limited diet, with no grains at all. Some weeks it is as long as 7 days, some weeks every 2. It is very hard to say what the cause it. I often feel that she is reacted to cross contamination of gluten from eating at my in-laws house (though we wipe the table down, gluten is like a hot pepper. Think of how it will still burn you even if you rinse something with water. It’s on door knobs, counter edges, plates perhaps) and at playdates and being out and about.

And then sometimes I think she is intolerant to something else. Perhaps we should again go all the way corn free.

And the sometimes I know it’s partly because she keeps it in herself. She seems to feel the urge but will run around the house for 30 minutes if need be to keep the urge from making her actually go to the bathroom. Azita did that too, and it’s not too too uncommon, but it seems to be worse when there are other signs of a food bothering her system (like keratosis pilaris, or skin bumps). And Azita stopped doing it about 3 weeks after we went gluten and dairy free. I have to constantly decide when I’m being a careful, observant detective mom and finding answers about the subtely of my child’s health or if I’m trying to control and find an answer for something I can’t control.

I could go back to a no-grain diet, I could. And it would be a small price to pay for a healthy child. But it can be hard to convince yourself to do that when you aren’t sure it would help and you are already free of some big huge allergens. Although, my advice to another mom would probably be just to do it!

The other issue– her teeth– is not simple either. She has had loads of dental work for someone who hasn’t even hit 2 and a half yet. Three root canals, two silver crowns and some drilling and filling. Her enamel is clearly very weak. Dentists seem to think we just need to clean better, but her pediatric GI at Duke recognizes that celiacs often have tooth issues.

The theory, my theory, at least, is that the enamel didn’t form properly because I ate gluten while she was in utero. Since she has been gluten free since she was 5 months old, the hope is that the adult teeth will come in stronger. What is funny is that people will say that “bad teeth” run in their families. So does gluten intolerance. Ada’s dad and granddad both struggle with their teeth.

Anyhow, through reading and talking to others, I learned that magnesium and calcium are important to bowel function, and that vitamin D is imporant to teeth health.

Then I learned that calcium, magnesium and vitamin D must be in proper proportions to each other. If calcium is out of whack, magnesium won’t be absorbed, and D is related to that too.

Ah hah! Two symptoms directly related to two or three nutrients related to each other, I thought.

Also, maternal vitamin D has an impact. One study found that women who did not have enough vitamin D while pregnant had children with more cavities. Nothing I can do about that now, but interesting nonetheless.

Now, I already had thought about the kids vitamin D before this. We don’t wear sunscreen unless we are going to be outside for a much longer time than normal or it is extremely hot. I also let the kids play outside with little clothes one– underwear or bathing suits. We are naturally meant to get vitamin D (vitamin is a misnomer, by the way, it’s a hormone) from the sun but we don’t because we don’t spend enought time outside, and when we are outside, we are fully clothed or have on sunscreen.

I thought my kid’s D levels would be good because of my actions in regards to soaking it up naturally. I personally don’t see the point in slathering them with creams with added chemicals just to need to supplement them with something else, the vitamin D. I do realize that a lot wouldn’t agree with me and would be worried about skin cancer, and I’m okay with that. We are doing loads to try to help their bodies be strong enough to fight cancers and illnesses if they ever pass our way.

So to cut to the chase, since I am way too damn wordy— I tested her D and calcium. Both fine.

That little rascal. There will be no magic keys for her, beyond living a gluten free life!! Oh how I was expecting them to both be low and once I supplemented she’d start going every day.

But hey, take that dairy council! Perfect calcium levels and not a dairy product in sight.

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We had struggled with the decisions of Ada’s dental work, worrying about the nickel and aluminum in stainless steel crowns, which are highly pushed by mainstream pediatric dentists and sealents, made of plastics containing BPA sometimes. 

Ada’s dentist seemed to get aggravated by our pushing and prodding about using a ceramic crown made for children by narrowing her eyes and saying “If studies backed up that those worked we’d use them.”

But on the day of the surgery I tried to smooth it over and told her we trusted her judgement and were just very cautious parents with a child with an autoimmune disorder (gee makes it sound so official).  We are trusting her with our child’s health and I didn’t want the relationship to be antagonistic.  The truth is we would be just as questioning and anxious with Azita or any other child.

She called us during the surgery and I wasn’t prepared for waht she was going to ask.  She said she was in disbelief at how much more Ada’s teeth had decayed since the month before when she saw her and that, in the front three teeth, stainless steel crowns weren’t even possible because the teeth didn’t have enough to attach a crown to.  Did I want her to pull them or attempt to reconstruct them with resin.

I told her my main concern was if Ada was in pain.  If she thought there was any chance that rebuilding them would leave the nerve close enough for her to eventually be in pain, to pull them, but that truth be told, I’d rather her still have some teeth than none.  It wouldn’t affect her speech, it’s just cosmetic.  I kind of hate to admit that.

I was more stressed the entire time after that wondering how bad her dental work was really going to be.

Her teeth look beautiful though, and I’m glad we did it.  The dentist decided to do root canals to completely take care of the concern about pain.  It just means there isn’t much rooting the rebuilt resin teeth in place, and we have to really hope she doesn’t smack her teeth against the floor or fireplace.  They will fall out. 

So she ended up with three root canals, two stainless steel crowns, and at least  fillings I believe.  Sigh.

The dentist began hinting at breastfeeding and “dietery” concerns that we will discuss Monday.  She said that as long as Ada is allowed to “eat whatever she wants”– and her meaning was clearly pointing to night nursing– we would have to worry about this stuff.

Sigh.  That is so not true.  Breastfeeding is not at all like bottle mouth, where the teeth are constantly washed in milk or juice sugars.  And breastmilk is non-careogenic.  With a bottle given at night, the liquid can pool in the front of the mouth, with the teeth.  With breastfeeding, the nipple is far back into the child’s throat, not bathing the teeth in liquid.  And the milk comes in and then wanes, so that a child is often engaging in non-nutritive sucking to help them settle into sleep.  This means that the milk is hardly there.  Again, not so with a bottle.

Besides the study in which researchers soaked baby teeth in cow’s milk and breastmilk for 6 months.  The cow’s milk decayed the teeth while the breastmilk did not, even after so many months.

The huge caveat to that is that when cracker crumbs were placed on the teeth and then soaked in breastmilk, the teeth decayed very rapidly.

So night nursing is perfectly natural, evolutionarily normal, and harmless to teeth IF they are not covered in food already.  You need to brush them well before you night nurse.  And then dentists need to stop blaming breastfeeding for yet another thing.

It’s a good thing Ada is my second child.  Had she been my first, I would be wracked with guilt, thinking I’d done something wrong.  But I nursed Azita the exact same way, and her teeth are perfect, which even the dentist can’t deny.  She said, “Well every child is diferent.”

I guess I’ll have to point out to her that the biggest different between the children is Ada’s exaggerated response to gluten.  And the weeks before the surgery, I’d been feeding her all kinds of cross-contaminated-with-wheat-at-the-factory gluten-free types of snacks.  Alot more carbs than usual, alot more traces of gluten than usual.

I want to help educate the dentist on the truth of the risks for breastfeeding at night though I don’t think it will help.  Maybe the next mom might have more encouragement if I do.  I used to get quite nervous at the thought of confronting doctors with the research I’d done that didn’t agree with their own opinion, starting when I was pregnant the first time and told my first OB (who I only saw once) that I didn’t want to be unnecessarily induced and she snapped back at me.

They get threatened.  It’s annoying. 

I guess I will print out some of the studies found here:

http://www.kellymom.com/bf/older-baby/tooth-decay.html

I’ll write about the endoscopy tomorroe.

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Add specialist number three to Ada-the-angel’s list of doctors at Duke Medicine.

Ok, well, this one isn’t really a specialist like the allergist or gastroenterologist.

But the girls each had their first dentist appoinments this week.  Azita has had no issues and turned four, so we took her, and she did marvelously.  She loved it.  They loved her.  Question and question and question about what they were doing to her teeth, only perforated by questions about when she would be receiving her new toothbrush.

Ada.  Ada has had some tooth chipping and decaying for several months now.  The front two were decaying quickly, and I’ve been making an effort to brush them well and use little flossers, more than I did with Azita, since we realized her enamel seems quite weak.  Weak enamel and issues with teeth often come in people with celiac disease, at the very least, anecdotally.

The front two looked bad, but still didn’t prepare me for the dentist’s assessments.  The wants to put two stainless steel crowns and about 8 fillings in.  She says there are extensive cavities in each of her teeth and that brushing them meticulously from this point on won’t prevent them from getting worse– which was my hope. 

She will have to be put under at the hospital for this amount of work.

We spoke about what metals are in the stainless steel crowns, including nickel and aluminum, and our concerns in putting these substances in the mouth of a child whose immune system seems to be in constant overdrive.  Celiac disease in as autoimmune disorder, after all, and Ada does seem to react to some chemical smells or pollens, as do I.

The dentist here gave me the name and a referral to Duke Pediatric Dentistry and suggested I get their opinion because of our concerns with the allergies, crowns and putting her under before the age of 2.

We will be going on Tuesday, bright and early, to be there at 8 a.m.  But it was that, or several months away, and there seems to be a sense of urgency with this.

Honestly, my main fear, is Ada being in more pain.  We speculated that the over-the-top throwing up from since before the teeth were in until a few months ago may have weakened the enamel.  She has had enough pain in her 20 months.  If she starts crying or seeming that the cavities hurt, my gut reaction will be to get all the dental work done.  We have to do something, we are just trying to find the least invasive way to go.

One dentist’s website, out of Texas, says he feels that stainless steel crowns are often unnecessary, cruel and antiquated.  But that is his opinion and I have no idea other than from him saying it, why that is.  He did say that adult teeth grow in crooked more often under crowns. 

There was some talk about nursing at night and bottle mouth, and I cited a study listed at the end of this article for the dentist, in which the researchers soaked teeth in breastmilk for 6 months and there was no decay, thus breastmilk in non-carieagenic.  The big caveat is, however, that they soaked teeth with cracker crumbs in it in breastmilk and there was quite a bit of decay.

So night time nursing does not cause the caries or cavities, but you must make sure the teeth are clean before you put them down to sleep.

The dentist kind of shrugged and said, “well sugar is sugar.”  That study kind of contradicts that, and I’ll be mailing her a copy of it, but still she was pretty nice about it.  The more we talked the more I think she could plainly see I wasn’t just negligent about the teeth.  When she found out about how strict Ada’s diet is, she started to realize this kid has some special issues.

And then when she looked at Azita’s absolutely sparkling little teeth (which I wasn’t even sure they would be, we aren’t perfect, but she does brush her teeth), I gained even more credibility.  She even said, “So you didn’t nurse this one?”, possibly showing her bias that she thinks the decay is caused by night nursing and I reaffirmed that I indeed had nursed them both the same way, how ever many times at night they wanted to until at least the age of 2.

I feel that the Duke office will probably have the same opinion, so I called some holistic/biological dentists to get their advice.  One gave me the brand name of a plastic resin crown which has no metals in it.  She said it costs more and is slightly less durable but it is the non-metal/non-chemical/crazy-crunchy-momma way to go.  Well she didn’t say it in those *exact* words.

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