22 November 2012

Complications of CF, the dental version

Recently, while brushing Bennett's teeth, I noticed a spot on a tooth that looked like a cavity. Since I have also recently realized Bennett doesn't eat on the left side of his mouth, I arranged to have Bennett's bi-annual dentist appointment moved up a week early.

Bennett and I went to his dentist appointment and, although he didn't cooperate fully with the dentist (Bennett is very suspicious of any medical intervention whatsoever), the dentist was able to observe what she saw was quite possibly 3 spots of dental decay.  She recommended that we go ahead and crown all three teeth.

I was surprised that he would need so much work on baby teeth.  "I mean, they fall out, right?" I asked the dentist.  "Yes, some of them do.  But the ones he has decay on, he needs until he is 11."  Ugh.  Not good.

I began to tear up in the dentist's office.  I felt like a horrible mother.  How does my little 3 year old have three cavities and he isn't even fully out of diapers!?

The dentist reassured me that it makes a lot of sense for him to have dental issues as a complication of his Cystic Fibrosis.  Bennett breathes through his mouth numerous inhaled medications daily that essentially coat his teeth with a sticky film that promotes decay.  Bennett chews his enzymes by mouth, which are like meat tenderizers to help digest his food - a medication, not likely beneficial for his teeth.  In addition to that, Bennett eats constantly throughout the day, an effort we endorse to keep him gaining weight.  But, likely the worst of all, Bennett has a history of chronic vomiting issues from his previous battles with the nasty GI bug, c.diff. (clostridium difficile).  Acid reflux and vomiting issues cause tooth enamel to wear away, putting very susceptible to increased tooth decay.

The dentist and I discussed what it looks like to do dental work on a 3 year old.  The dentist said she could do it in the office, under anesthesia, as long as Bennett's CF doctor would be ok with that.  Despite the work that needed to be done, an in-office procedure seemed fairly reasonable.

I received a call from the dentist the following day.  She had spoken with our CF doctor,  who agreed an in-office procedure under anesthesia would be fine for Bennett.

However, the dentist reported, there was one complication: the anesthesiologist that regularly works with Bennett's dentist did not feel comfortable being involved in such a complicated pulmonary case.  Apparently, the anesthesiologist didn't feel qualified to give anesthesia to a child with Cystic Fibrosis in an office setting.  So, she declined to be involved at all.

So, our dentist, having no anesthesiologist to do the procedure, would now not be able to work on Bennett in the office.  Our only choice would be to do it in the hospital.  And, since our dentist doesn't have hospital privileges, we were going to be referred to another pediatric dentist.

Disappointed and but certainly understanding the complicated nature of Bennett's issues, we made an appointment with a Pediatric Dentist at Scott and White Children's Hospital in Temple to discuss completing the procedure in the operating room there.

Not surprising at this point, when we met with the Pediatric Dentist at Scott and White this week, he found, not 3, but 7 spots on Bennett's teeth that he is concerned about, two of which may require "baby teeth root canals." (Did you know they even have such a thing?!?!)

The reality is we don't know how extensive Bennett's teeth decay issues are.  Bennett is too young (and too frightened) to allow them to do x-rays at this point.  So, the doctors are having to make determinations of how his teeth look from the naked eye.  We have agreed that the dentist will have to determine his treatment plan after Bennett is fast asleep in the operating room.

So, now, in the midst of the holidays, we are trying to coordinate two surgeries, at the same hospital, at the same time, within the weeks between Thanksgiving and Christmas.  Both Pediatric Surgery and Pediatric Dentistry would like to complete Bennett's surgical procedures simultaneously to save him the stress and potential danger of having to undergo anesthesia more than once.

A few side notes..
* Why does this feel a bit like groundhogs day for us?  It's because it is.  We were undergoing the same rectal prolapse surgery almost one year ago exactly.)

* Thankfully, Oliver is 5 and has no cavities, so that has helped reassure me I can, in fact, care for my children's teeth.  It's just that when a child is medically-compromised, like Bennett is, things can get hairier faster.  So, pushing any mother-guilt aside, I push to help Bennett get the dental care he needs as soon as possible.  Thankfully, it looks like it's going to happen soon.

* Surgery date is still to be determined.


  1. Ugghhh, I'm sorry you're going through this. I have worried so much about Finn's teeth for all of those reasons. We have an appointment in just a few weeks and I am worried. The other little CF boy in town here had to have crowns on all 20 of his baby teeth at the age of 2! CF is such much more than just a pulmonary disease and it's just never fun when it sneaks up and reminds us once again that it's there. :(

    1. Ah, thanks Angie, I appreciate your thoughts. That is horrible to hear about the little boy who had crowns on all of his baby teeth. But I'll be honest, in some way, it makes me feel better! I SO agree with your comment that CF is more than a pulmonary disease. CF's genetic mutation affects every cell in Bennett's body, even though I sometimes forget it! I also agree it's so not fun when it sneaks up and reminds us it's there. That's so "classic" CF...sneaky!!! Thanks for your sweet comment. :)

  2. I never knew there was such a thing as a baby tooth root canal, either. I have a little boy with CF too and reading your blog is like looking into the future...helping me be aware of what we could experience as well. I hope the surgeries go well and that he feels better very soon!

    1. Thanks for support, Lauren! You're sweet Victor is ADORABLE! I have found following other families with CF (particularly those with children a little bit older than my Bennett) has been a great resource. It's nice to get a "heads up" of what might be coming down the pipeline. However, the good (and bad) thing about CF is it's so very individual. So, I hope you guys won't run into these issues at all. But if you do, at least you're know you're certainly not alone! Looking forward to following your story now too!

  3. My son is almost 13 and has CF. I've followed your blog for a while and have appreciated and enjoyed your writing. I'm very sorry to hear about recent developments. I've seen rinses in the store that are for restoring enamel to the teeth - I wonder if that would help protect Bennett's teeth. I also wonder if a chewable probiotic would be beneficial by getting some good bacteria in the mouth - there are some good flavored ones for kids.


    1. Shelly, Thanks for your sweet words. I haven't ever heard of a chewable probiotic being beneficial for the teeth or anything about rises that would restore enamel to the teeth. But I will look into both of them! Thank you for the suggestions! The good thing is, once we get his teeth fixed, we will hopefully get him to a better place to begin caring for his teeth in as best shape as we can. They are going to give him a great cleaning since he will be asleep during the process. We will also probably begin going to his pediatric dentist more regularly. Anyway, thanks for your suggestions and for sharing in our journey. I hope your son is doing well with his Cystic Fibrosis! Sounds like he has a very wonderful and resourceful mother to care for him!! :)

  4. Breck,

    Just wanted to let you know you guys are being prayed for during this difficult time and always!


    1. Thanks so much, Meredith. :) That means alot.


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