New Panos

On Friday I took the kids to my work and decided to get some new panoramic x-rays.  It's been almost 2 years since Caleb's last one, and Angie's last x-ray was......undiagnostic.  We just got a new machine, and so I was excited to see how they'd turn out.  I must say.  Quality-wise....they turned out GREAT!  I only wish they gave me some better news. 

Below is Caleb's pano.  Mostly bad news here.  His little canine tooth is coming in SIDEWAYS.  It doesn't look like it will ever errupt.  I've heard of orthodontists taking impacted canines out of the palate....but I've never seen it on the mandible (bottom) before.  And his one little molar, there's no permenent tooth behind it.  My boss says there's still a chance that it could start to calcify late.  He says he's seen it happen lots of time.  And especially since we KNOW Caleb's experienced delayed erruption anyway (his first tooth came in when he was 2 1/2).....who knows.  There's still a chance I guess.  I'm not counting on it. As for those two little fangs on top.....nothin' behind them either.  My poor boy.  How un-lucky.  I wish I had an explanation for him.  

The next one is Angie's pano.  She did such a good job!  I told her to stand there and don't move....and she did it!  The x-ray turned out brilliant!  I was so proud of her.  As far as her teeth go.....she may have more baby teeth than her brother....but so far what I can see of her permenent teeth.....she's about the same as her brother.

No permenent teeth behind those 4 bottom, front teeth.  The little "shark teeth"......well they're gonna be around for a while, unless we decide to take them out.  They're so itty-bitty....who knows what we're gonna do with them.  I THINK I do see permenent teeth behind her 2 front teeth on top.  They look HUGE (as all adult teeth do, when you're looking at a TWO year old)...but I'm pretty sure I can see them.  Some bad news: I don't see her 6-year molars starting to calcify on top like they are on the bottom.  If they decide to NOT develop....she'll be just like her brother in that matter.  I can't really tell if any other permenent teeth are starting to develop on top.  It doesn't look like it.  Her primary laterals are missing on top....so naturally there's no permenent ones either. On the bottom....well she may get a few more than her brother, but not by much.  She's still VERY young, so we might get to see a few more start to calcify.....but honestly I just don't know.

I just sit and stare at these x-rays.....wondering what is to be done.  Why are they like this?  Is baby #3 gonna have teeth like this? (My guess would be yes....but how bad?)  Ultimately I just have to remind myself there's absalutely NOTHING I can do about it right now, and just quit worrying.  I am grateful that my children are otherwise healthy, very happy, and most of the time they're even easy to care for.  I guess I can't ask for much more than that.

Angie's Pano

I decided to go to Boise this weekend, since Parker is off hiking in the mountains for the next few days. Friday I stopped at my mom's office and tried to get some x-rays of Angie. I have just been DYING to know how many teeth she's gonna get. I'd pretty much already admitted to myself that she's gonna have problems just like her brother. Ectodermal Dysplasia is genetic. Yes, it's supposed to be rare. But I guess not for my little family. She has her 4 front teeth, and they're shaped pretty weird. Kinda jagged and conical. As she approaches 18 months, I pretty much decided that it's possible there might not be any more coming.

Well at Dr. Emory's office we tried to get her to bite on an x-ray. Hah. should've known better than that. I can hardly even get her mouth open to brush her teeth. Then we decided maybe we could get her to hold still long enough for a pano. We knew it'd be blurry, since there's NO WAY she'd hold still for the entire time, but maybe just long enough to see a few teeth?

We tried 3 times. The first 2 she kept turning her head and looking around. The third time, by some MIRACLE she just stared at herself at the mirror, and only turned her head once at the very end. Here's what we got:

Can you believe it?!! My miss Angie not only has teeth, she has ALL OF HER TEETH! I started to cry the second I saw them. "She has so many!" I just kept saying over and over. "Look at all of them!" I counted them over and over again. Twelve on the bottom for sure. At least 10 on the top, and maybe more. What a miracle! I am so grateful my baby girl held still long enough to give me this peace of mind. It looks like the teeth are sharp and pointy like Caleb's. But.....they're THERE!! Wow. My Angie won't have to wear dentures.

What a good day!!

We're not alone....

Sorry about the blogging slump. It's not even my fault. Our monitor has quit working on our home computer. After about a week of me thinking it'd fix itself.....I've resorted back to the laptop. Which really isn't even all that ancient. We bought it in 07. It wasn't the MOST inexpensive one available at the time....but close. It's out of memory. Every time we turn it on it gives us these alerts that if we don't shut it down then things could be lost. I'm sure there's a simple solution. We've deleted lots of files. It's still at about 80% now. My ipod has more memory than this thing. But....it DOES work. Just slower. A lot slower. Anyway 2 weeks ago something awesome happened. My Grandma Willis has been staying at my mom and dad's for the past few months. And she told me something, that I'd heard before....but for some reason I'd always brushed it out of my mind. Too distant. Not really relevant to US. Let me explain. I guess Grandpa Willis has a sister with 2 out of 7 (I think it's seven....could be wrong there) children that have chronically missing teeth and thin and wispy hair like my children. Well....of course they're much older now. One is a boy and one is a girl. The girl's name is Jenny. And I got to talk to her on the phone. It turns out Ectodermal Dysplasia DOES run in my family. It's on the WILLIS side. Why it's exhibited in MY children and nobody else's I may never know. But Jenny had struggles as a child. Her front teeth were tiny and pointy (very much like Angie's). She's missing about 8 teeth. Pretty good actually. My son has LESS than 8 TOTAL. And who knows how many Angie has. And her brother (sorry I can't remember his name....starts with a "W") has NO teeth on the bottom. Wow. And both of them had hair that looks JUST like my kids when they were young. Now Caleb's hair is starting to get thicker as he gets older. But.....when he was Angie's age, it looked exactly the same as hers. Here's what fascinated me the most. She had NEVER heard of Ectodermal Dysplasia. And so I had the opportunity to tell her about it, and I gave her the website, and told her about the international registry. I think she was surprised to finally have an family explanation for why she and her brother were just a little bit different. Anyway. Talking to her made me feel really good. It's nice to know that what my children are going through isn't COMPLETELY random. Will my children's children have ED? I don't know. Hers don't. She has 3 kids and her brother has five. Crazy. Anyway. I'm making a little change to this blog. In the left column, I'm creating an area with links to all of my previous posts about ED. (If I can find them all....I only have 3 years of archives to go through).

F.U.D.

Some of you may not know. FUD stands for "Full Upper Denture." Last Friday Caleb got his teeth. I always knew the day was coming....but I never thought it'd actually get here. Over the past 2 weeks, I've been taking Caleb into the office on my day off (Friday). The first week we got impressions. Which is never fun no matter WHO the patient is. This patient is 4 years old. And he did surprisingly well. We did the lower impression first. No problem. He just sat there while that stuff stiffened up. But then we had to do the upper impression. I know how he felt. He had to feel like that stuff was going down his throat. We practiced breathing through his nose before starting. And actually especially while we did the lower impression. Even so, after about 10 seconds he started crying. There wasn't anything we could do either. I was holding Angie....who would run off and terrorize if I let her go to wipe his tears. So Dr. Thompson held those trays in his mouth, and he just sat there and cried. Jenny wiped his tears while he sat there. Luckily he never actually struggled. Just cried. It was kinda sad. But it didn't last long.

The next week, we had the upper teet ready in wax. He tried it on to make sure it fit. It did. This set of upper teeth is unique. Originally we thought he'd have partials (partial denture) on both arches. But the guy at the Denture Center thought it might work better if we over-lay the 2 teeth he has on top. So his upper teeth is actually a Full Upper Denture, not a partial. However, I am trying really hard not to call it a denture around him. I think the word "denture" has a sort of stigma to it. So we'll call it his flipper, or his teeth.

Then, last friday we had the finished product. He tried them in, and we showed him how to put them in and take them out by himself. Within no time, he was popping them in and out. He'd say, "Mommy! Look at my new teeth!!" Then he'd put them back in. When we got home, I had him try to eat with them in. Not as successful as I was hoping for. They didn't stay in well at all. We have to use fixodent to hold them in properly. But after taking his first bite (bread) it stuck to his palate and he wanted to pull them out to clean them off. I encouraged him to just eat slowly, and swallow slowly. (He must feel like is mouth is allready full with those things in there). But ultimately, he wanted to take them out to eat. So I let him. I wasn't gonna push it. The last thing I want is for him to resent wearing those. We'll take it slow. From that time on I decided that I would have him chew with his teeth, but not bite yet. Without the bottom teeth, biting still doesn't work very well. So I'll still cut up his food....and he can just practice chewing. He'll get the lower teeth in a week or two, depending on how long it takes him to get used to the top. So far, he's been wearing them for 45 minutes to an hour about twice a day. Baby steps.

One other thing....he doesn't talk very well with his teeth in. I have been encouraging him to speak slowly and hopefully he'll start to articulate a little better.

These pictures don't really do justice. He doesn't really know how to smile correctly. He kinda jutts his jaw to one side to smile. Maybe he just needs to spend some time in front of the mirror. ;) He'll get it. I'd say they really do look pretty good. If you inspect them closely....they do look a little un-natural. But not NEARLY as un-natural as just the two canines pointing down. I think he's gonna do well with them. I hope.

I also took a little video of me talking to him on the first day after he got his teeth. Enjoy.

We're so proud of Caleb. I never would have dreamed that we'd be able to get his teeth made at such a young age. He's such a good little boy. And now hopefully we can get him used to wearing them before he starts school in September. Congratulations Caleb.

Caleb's pano....a reason to rejoice!!

Today was a great day. Parker and the kids decided to come and visit me during my lunch break. I was really happy that they came to see me at work (that doesn't happen very often). And while we were there I decided that Caleb might be ready for a panoramic x-ray. We've been putting it off because we weren't sure he would cooperate. However, since he was in the office today I decided we'd give it a try. I showed him the pano machine, and told him what it does. Then he walked right up to it, held the handles and bit on the mouthpiece as if he knew all along what to do. He held completely still as it was going around his head and when it was done we saw this.....

I took one glance at those little molars in the back and tears came to my eyes. He has molars!! Oh the relief! Do you realize what this means?! First of all...that's 2 more teeth to chew with once they come in. It means that when he's all done growing, those molars can be an anchor for a bridges or a flipper. Now....sadly he's only got the 2 on the bottom. I don't see any maxillary molars.....but you know what else this pano shows?

Tooth buds at the base of each canine! Permanent teeth growing behind those tiny little buggers! And his one molar that is errupted, has a small dark spot at the bottom of the roots. It's likely that that dark spot is the START of another permanent tooth bud. (That particular tooth is one of the last baby teeth to come out, so the permanent one doesn't develop until later).

I can't even express how happy I was today. My boy will get 2 more teeth! Not to mention he will get the experience of losing at least 5 of his baby teeth. What a day! Dr. Thompson also said we'll probably be able to get him fitted for a flipper in about a year. At least the top. He's going to look so different with a toothy smile. I know it's gonna be weird for me at first. I hope he'll wear it. But we'll cross that bridge when we come to it. For now...I'm happy to report my boy has molars!

Caleb's teeth!....I think there's FIVE!

Today we had some errands to run...and since we had to stop by mom's office, we decided that we'd better take some x-rays of Caleb's teeth now that they're starting to come in.

Now I have to say, the first picture is my favorite because HE HAS A MOLAR!! And you know what's even cooler? That molar was the first one in. If you look at the top you'll see there's no gray shadowyness above that little tooth, and that's because it's alrady in! The second picture is the other side of his bottom teeth....looks like it's just the canine. The other two shots are occlusal views, and please don't scoff....it's VERY hard to get a two-year-old to bite on a little piece of film and it's even harder to get him to hold still while you push the button. The first is an occlusal of the mandible (the bottom teeth). It only shows the canines, but we know there's a molar behind one of them that you can't see.

And the second occlusal is at a bad angle and we got it as he was in the process of spitting it out, so we were lucky we got anything. What's crazy about this shot is what is to the left of the canine on the left.....doesn't that look like another tooth growing in sideways? I can't wait till he's big enough to hold still for a pano. Anyway, I was totally thrilled when we finally got these pictures. Boy he's gonna look funny when they all come in. But that's okay, every tooth in the mouth is a blessing and it will help to hold a prosthesis when he's ready for that. So....four canines plus a molar equals FIVE TEETH! Horray Caleb!

Caleb cut his first tooth!!!!!!

Well, I wasn't sure it would ever happen, but today Caleb finally cut his first tooth! Tonight he was running around, I we thought he had something in his mouth....so I went to see what it was, and when I stuck my finger in his mouth I felt something sharp on the bottom left side. HE CUT A TOOTH!! Holy cow, we were so excited! Delayed erruption is a symptom of Ectodermal Dysplasia, as well as missing teeth they manage to come in late.

Now, we know from some of the x-rays that our son is missing some teeth that are gonna affect the way he looks. With only canine teeth on the front, and only canines and maybe one or two molars on the bottom, he's gonna look like a little vampire when they all finally come in. I've attached a picture so you can see what it will look like...THIS IS NOT A PICTURE OF CALEB. But it is probably what he will look like (or close to it) when all his teeth finally come in. You'll notice the bottom picture is also a changing picture, that shows before and after dental treatment. It's pretty cool. Anyway, so no making fun. We're happy his teeth are finally coming in, and even though he's gonna look pretty silly till he's old enough for us to convince him to wear a denture, we just want to take this moment to congratulate Caleb on his first tooth, errupted at two years and five months.

Ecto-derma-what?

When Caleb was about a year old, I started to get a little worried, because none of his teeth had errupted yet. We asked the doctor about it, and he said that there are some one-year-olds that don't have teeth yet, and that we should wait till he was fifteen months old before we start to worry. So...fifteen months came, and still no teeth. At that point the doctor and his dentist started to wonder if he might have a rare condition called ectodermal dysplasia.

ED is supposed to be a genetic disorder. It's really rare, but it's even MORE RARE for it to just come up spontaneously, like in Caleb's case. In order to diagnose ED, there must be two or more symptoms shown. A common symptom is several missing teeth, but it can also affect the hair, skin, skin glands, and/or nails. Well, we finally made an appointment with the Genetics Clinic to see if we could figure out it it's really ED or not, and today we went. These are some pictures of Caleb in the doctor's office. He's not lying on that paper-covered table because we told him to....he did that himself. It was kinda cute. He was really good. The doctor did a thurough physical inspection, and looked at his skin, his hair, and in his mouth. Caleb was really good, and we even brought his toy doctor kit so that he could do an inspection on mom as well. :)

After evaluating all the assessments, the doc let us know that Caleb DOES have ectodermal dysplasia. We still don't konw what KIND, and that will require further testing. We will continue to find out what this will mean for Caleb's future as far as Caleb's health, as well as the chances that our other children (when they come) will have it....and if it will eventually pass on to Caleb's children. This will require blood testing, which we will be doing in 2009.
So the rest of this post is kinda a little science lesson on how ectodermal dysplasia happens. The funny picture here shows the neural plate. Back when the baby is a couple of microscopic cells, or an embryo, there are certain things that have to happen for the embryo to continue to grow. The neural plate folds in on itself, to create some essential parts called the ectoderm, the endoderm, and the neural tube. The neural tube is eventually what develops into the brain and spinal cord. And the ectoderm, is what develops into the hair, teeth, skin, and nails. The next picture is the neural tube, and the red is the ectoderm, the yellow is the endoderm, and the blue is the mesoderm. Each of these funny words develops into major organs in the human body. You can imagine, if something goes wrong with one of these tiny groups of cells...how that could cause some serious changes to the human body. Luckily for me, I took Embryology when Caleb was only four weeks old, and so I knew what ED was before I even knew that Caleb had it. Caleb is otherwise healthy. So there's no need to worry about anything. We're just trying to figure out the fine details of the matter. He's happy and healthy, and we'll keep everyone posted as we figure out more.