???'s about orthodontia/dental work

[CFHockeyMom]

Ok, Sean had his orthodontic consultation today. He's been going to the orthodontist for a while now but this was his first official consultation (i.e. the Dr. let us know the extent of work needed to be done).

Sean needs a ton of work. He's got an under bite, a small palate, missing adult teeth, and just general "crookedness". When all is said and done he'll probably need to undergo gum surgery because of all the moving/shuffling they'll be doing and the resulting effect to his gums. He's in the beginning stages and won't actually get his braces for a while but does need to have some teeth pulled sooner rather than later to help avoid any further problems.

So here are my questions:

Are there extra risks for CFers and dental work?

How many of you CFers/your CF kids have had extensive dental work/braces?

Lastly, and this may upset some of you, is it worth it? I'm not being negative but facts are facts and Sean has CF. He's cultured pseudo since day 1 and has cultured cepacia once. I have no illusions about Sean's health or his future. Is spending +$6000 on dental work plus all the "torture" he has to endure in his best interest or should we save the money for future health care expenses and spare him the pain/agony?

Thanks in advance for your input.

 

[JazzysMom]

He is so young that I dont question the benefits. Easy for me to dish out advice when I never took it for myself. I now wish (I know its not too late blah, blah, blah) that I did something for my teeth, but I DID/DO think its a waste of $$. My teeth were/are poor quality all around. Genetics & meds killed them. Its a lot of work to go thru & yes a lot of $$. We cant lie about that. Some might say take that $$ and use it for something else, but teeth are important. For medical reasons & self confidence! I vote go for it!

 

[Jane]

Claudette,

I totally understand your question about "is it worth it?". Josh got braces two years ago. He needed them for an overbite. He didn't have to have any teeth pulled or pallette expanders. He was really happy to have braces because it made him one of the crowd. I guess its nice to have to have things that other kids have even if its painful. Its just something kids do. We were fortunate because our insurance paid part.

I never questioned it until this year. Since Josh has been through so much this spring, getting him to wear his retainer has been impossible. Really how can you ask a kid to put in his retainer when you're worried about fitting in all the other really crucial stuff. His teeth have been moving slightly. Under normal circumstances, I'd be really mad, But looking at the "BIG PICTURE", having crooked teeth is not a big deal.

But if it makes them feel better being one of the guys- do it.

 

[Jem]

I vote for the braces too because kids can be mean. Our teeth can make a huge difference in our appearance. And your son has enough to deal with with having cf. I want to share this story of a friend of mine who was in the same situation as your son. My cf friend's parents were told by the dentist not to invest in braces because, after all, it would be a waste of money because their daughter was not supposed to live past her teen years. He told them the money would be better spent on a family vacation instead. My friend overheard this conversation and was hurt by what the dentist said but never told her parents. Well, her parents decided to make the sacrafice and go ahead and spend the money on the braces. My cf friend is now 42 years old and still kicking. She has a great smile. My friend said that her parents going ahead with the braces was a message to her that her parents had confidence that she would be around for a long time to enjoy them.

Good luck with your decision.

 

[anonymous]

How does your son feel about getting braces? If he wants them, then I say go for with no hesitation. I am now 28 years old (no cf) and had braces twice to fix my bad teeth. I was done with them at the age of 16 and have been SO SO SO glad to have good teeth. If I were to die today or even 5 years ago, the money was well spent.

About the risk, there is a dentist somewhere online who has a child wcf. He has shared some precautions/ideas...I may have seen that on CF Parents at Yahoo...

Best Wishes!

 

[julie]

Is it worth it is a very valid question. Mark's parents didn't do anything for him with his teeth, and they needed some work. So we spent about $5500 when we first got married on braces and getting caps on 2 of his teeth because of the shape of them (they were 1/2 the size of his other teeth) and because he really needed the braces.

So I definately think from that standpoint it's worth it- CF or no CF.

How committed is he to taking care of his teeth though? Braces (traditional metal ones) are a pain in the butt, require daily flossing (sometimes 2x a day) and definately brushing at least 2x a day. I personally brushed after every meal. It might require a serious discussion from mom and dad if you have concerns about him taking care of them.

Another big thing is, do his teeth being messed up affect how he feels about himself? I know I was always self conscious of my teeth, even though I had my braces at an early age. Mark was even more conscious about his teeth as he got older. Self image is a very important thing, especially if he already struggles with some of the stigmas of CF.

Definately isn't a life or death situation, no dobut there. But if he's committed to taking care of his teeth and he wants it, and you are willing to do it, I woud recommend you go for it.

Does you ins cover anything? I know my parents split up my teeth pulling and ortho. stuff over a few years so they would have their yearly maximum start over and get more coverage from the ins. company.

Best of luck whatever you decide to do.

 

[Giggles]

I have cultured pseudo my whole life and I am 34 years old and had braces. I say if you have the money then yes.



Jennifer 34 Years old with Cf and CFRD

 

[anonymous]

My mother told my dentist that I would not have braces because of everything else i had to deal with. Luckily I turned out not to need them

I agree with the poster that said kids can be mean. Although the kids might not know about CF they will see his bad teeth and then he will be teased forever. in my mind that is not worth it and I wouldn't want to put a child through the teasing.

Sue 24w/CF

 

[NoExcuses]

I had braces.

I also have a receding gum tissue on the bottom front 4 teeeth (hereditary). So they took tissue from where my wisdom teeth used to be (i got those pulled) and covered the low gums.

Never had an issue, but my CF rarely gives me much trouble.

 

[janjoe]

iv'e thoght about this very thing . our new dentist ( ignorant of cf) told us joe would need braces. i think he has nice teeth!!!!!!!!!!! wer'e lucky in uk 'cos we don't have that "perfect teeth " culture. you may have noticed!!!!!!personally i won't bother putting him through all that . because of the cf, he is already TERRIFIED of jabs and needles.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[dyza]

My daughter has just finished with her pallet spreader and she will move on to a brace once her adult teeth are all in. Our dentist is very up on things here and says that a proper bite will correct many problems, headaches, neck strains, migraines even.
The thing is here in Scotland, my daughters treatment is free, we have to pay for cosmetic treatment. Would we do this if we had to pay for it ? No question there , yes, absolutly.
When I was young I didn't look after my teeth, then I had 8 knocked out playing rugby when i was 16. Crowns followed but ultimatly have lost most of my teeth. DEntures are brilliant for lazy people. I would never put any of my kids through that. Braces are all the rage just now anyway.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janjoe</b></i>

iv'e thoght about this very thing . our new dentist ( ignorant of cf) told us joe would need braces. i think he has nice teeth!!!!!!!!!!! wer'e lucky in uk 'cos we don't have that "perfect teeth " culture. you may have noticed!!!!!!personally i won't bother putting him through all that . because of the cf, he is already TERRIFIED of jabs and needles.<img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote></div>

hahahaha.....so was Austin Powers a real super agent then?......hahahah

 

[janjoe]

i don't get it <img src="i/expressions/face-icon-small-confused.gif" border="0"> never seen the films ,i know who he is though , groovy baby!!!!

 

[dyza]

another way you could maybe go is by using a dental collage.
In Glasgow we have the 'Dental hospital and training collage', anyone can get treatment here by appointment, obviously the treatment is by medicle students, under supervision.
They have to learn, dont they. And if they learn here in Scotland, I'm sure there must be the same kind of establishments in the US, or wherever.
Getting braces may be difficult this way, it may be more run of the mill treatments, but giving the cost.?
Hope this helps you, and everyone.