Q&A with Candace Hixson (Mom to Samson)

Thanks to Candace Hixson, mom to Samson, for taking the time during National Children's Dental Health Month to share their family’s experiences as they manage the oral health of their child with FOP.

1. Why is prioritizing dental health important to you as the mother of a child with FOP?

I want to avoid the need for dental procedures that could be damaging to Samson’s jaw and overall health, especially now that his jaw has started to lose range of motion.

2. Are there any specific tools that have been most helpful in supporting good dental health for your child with FOP?

Before his jaw started locking up, an electric toothbrush was great for Samson and helped make sure he was brushing long enough. When he was younger, we used a toothbrush that connected to an app on my phone – Colgate HUM toothbrush and app. It would show how long to brush and it could identify if he was brushing thoroughly in each area of his mouth. Now that his jaw has become restricted, a normal toothbrush is difficult to fit between his top and bottom teeth. I have recently switched him to a flatter manual toothbrush with curved bristles that hug the teeth. It’s the Collis Curve Triplefit Periodontal Toothbrush (pictured right ). We are also trying to implement a water flosser. 

3. Did you have trouble finding a dentist who was comfortable treating a client who has FOP? If yes, how many dentists did you visit before you found your current one?

No, we did not have trouble finding a dentist to treat Samson. We had a pediatric dentist when he first started going to the dentist as a toddler. We recently switched to our regular family dentist, who has been wonderful and ready to help.

4. What resources did you bring to your dentist to help them learn what they needed to know about FOP?

I emailed the FOP Treatment Guidelines and also had them consult with a dentist who is an expert in FOP. You can find both resources at ifopa.org/emergency

5. What is the biggest challenge you've faced in practicing good oral health and how did you overcome it?

Just making sure that Samson is brushing well and for long enough was the initial challenge. We tried different items until we found what worked for us. Our biggest challenge now involves the fact that his jaw only opens about a centimeter so it is difficult and scary to get a toothbrush in his mouth in all the places it needs to be

6. How often does your child visit the dentist?

Samson goes to the dentist every three months. That’s four times a year (as opposed to the typical two times a year for a "normal" patient).

7. Did you have any issues getting your insurance to cover the additional dental visits that are recommended for a person with FOP? Did you provide any documentation or resources to your insurance provider to get them to cover the additional visits?

Our current provider does not charge for the two extra visits. Our prior provider did not charge extra either.

8. What does a typical dental visit look like? Is it any different than the visits that your other children have?

Samson's visits take a little longer than his brothers' visits. Our hygienist takes extra care and extra time to clean his teeth and provides plenty of time for him to take breaks and rest his jaw. We haven't been for a cleaning since his jaw became restricted (just over the last month) so I am sure his next appointment will look a bit different.