I was going to write my first blog about something a little more introductory and not as specific as this topic. But, a lot of people have been asking about this, so I thought it would be helpful to share my research and experience.

If you have a child with autism, teeth are likely an issue. Our kids have sensory issues and it may not be easy to brush their teeth, let alone to floss regularly. Our kids tend to be picky eaters – limiting themselves to carbs and sugars. Even kids on a diet free of gluten or even grains altogether can have issues – I know that even though we try to eat really clean my son eats more dried fruit than he should and even though there is no added sugar there is natural sugar that is not good for his teeth. Some of our kids are nonverbal, so we might not even know there is an issue going on until it is undeniable and past the point of natural healing. Many of our kids cannot sit still for an in-office procedure and so, dental surgery is the only option.

This can be extremely scary and induce a lot of anxiety. There are stories of children experiencing regression following surgery. There is a lot of medication being given in the IV. There are lot of different dental materials used (some with mercury, BPA, fluoride, and other things you might not want to put in your kid’s mouth). When my then 5-year-old son Christopher (who has severe autism and is mostly nonverbal) had dental carries and cavities, it was extremely stressful for me. I knew I had a lot to learn and I was just wishing that someone would just give me a to-do and a not-to-do list.

Putting all of the information together ended up being a longer process than I initially thought. It is probably a lot to take in in one sitting. So, I’m writing this as a 4-part series to make it less overwhelming. This first part will just be about initial preparation and research. In the upcoming weeks, I’ll be writing about:
Anesthesia and Medication during Dental Surgery
What to Expect the Day of Surgery
Follow-up Prevention and Care

Additionally, though this is written specifically for children with autism, I followed the same protocol when my neurotypical son had dental surgery – so this post might also be helpful for anyone who wants to learn more about dental surgery for any child.

And on to the preparation…

The first thing you need to do is make sure that you are working with a dentist who you have a good relationship with. If your dentist is going to insist on things you are not comfortable with, be annoyed at answering your questions, or make you feel belittled for your concern and views, you need to move on. I am lucky to have a dentist who I like and trust. For example, she knows I don’t use fluoride for any of my children and even though she does use it in her practice, she’s never made me feel bad or weird about it, and when I tell her why she respects my beliefs. When we talked about surgery, she took my concerns seriously and was more than willing to not only answer any questions I had, but also to support me when I spoke with the hospital staff. She was also okay with my needing specific dental materials and sent out for any that were not readily available in her office.

The trade-off is that a lot of it ended up not being covered by my insurance. You might be luckier, but you should be aware of your expenses up front. You will likely need preapproval for surgery from your insurance company, especially if it is a procedure that it usually done in a dentist’s office. Make sure that the dental office and the hospital or surgical facility have all of your insurance information (and which is primary and which is secondary if you have more than one) for both your medical and dental coverage. Be aware that you’ll need to check on this as the bills come in. There will likely be separate bills from the dentist and from the hospital, and you’ll need to check that the procedure was covered as planned. In our case, our DENTAL insurance paid for the dentist’s charges, minus our deductible (and some of the non-typical materials we used) but did not cover the dentist’s fee for working in the hospital. We have Medicaid as a secondary insurer (Pennsylvania has a Medicaid disability waiver), but our dentist does not accept Medicaid, so I was on the hook for that. The MEDICAL insurance covered the hospital minus our deductible, but Medicaid picked up that difference, so I didn’t have to pay for that at all. Plan on insurance mistakes – it might be good to have the contact information of a supervisor at your insurance company if you don’t already. It saves a lot of time to be able to call someone directly. We’ve gone through two procedures and there were insurance issues both times. The first time the hospital was billing the secondary insurance without first billing the primary (but only for the anesthesia – the rest was billed correctly), and the second time the insurance covered the surgery as was pre-authorized but denied the anesthesia (which should have been included as part of the surgery). It will usually get straightened out, but don’t expect that to happen without you notifying them. You don’t want to be stuck with a big bill you aren’t really responsible for.

You should also prepare yourself for some research. I’m pretty good at scanning the internet, and I found very little. I wanted to make sure that I understood everything, so I ended up calling friends and professionals I knew for their take and for further clarification. Some of the articles and information that I found helpful are at the bottom of this post.  The important thing is that you are aware of everything that will be going into your child’s mouth and body.

You might also want to consider getting a Biocompatibility Test for Dental Materials from Clifford Consulting and Research. I was on the fence about this because it is expensive (about $300 not covered by insurance) and it was a huge hassle for us. But in the end I was really glad we did it. This is a lab test that has to be ordered by your dentist. They won’t take a payment from you, the individual, so your dentist has to agree to this, order it, and then add it to your bill. UPDATE: it looks like they now have the option to order the test yourself in most states, which is extremely helpful. The cost is $325, which is $30 more than when I ordered this. I don’t know if it costs more for you to order it yourself, or if the price has just increased in the last few years.  The test requires a blood draw that is sent to CCR and then they send back a booklet of a vast amount of dental material and lists whether or not each is suitable for you. The front page summarizes Reactive Components and Nonreactive Components. Our dentist (luckily) thought it was fascinating.  This is what the front summary page looks like:

CCR cover page

Why was in a pain in the a$$? First, the time crunch. If your surgery isn’t an emergency, I would still get this done as quickly as possible (starting at least a month before the surgery) to allow time for your dentist to order the test, the test to be shipped, the blood draw, shipping the specimen, the specimen analysis and results, and then working with your dentist for the materials you will use regarding the outcome.  I would definitely have allowed more time if I had it – we ended up having a very difficult time. Once we got the test, we needed to have the blood draw. Gone are the days when you can walk into any old LabCorp or Quest with your own test kit for your child with autism (we learned when we tried to do this). I think I ended up calling CCR and they suggested trying www.anylabtestnow.com, which luckily had a location nearby. We booked the blood draw online only to find out upon arrival 2 days later that they didn’t do pediatric blood draws. It was now Thursday afternoon (when I was hoping to ship the specimen out, since it can only be sent Monday – Thursday) and Christopher’s surgery was going to be 11 days later. I spent the next day, Friday, calling all the hospitals in our area to see if anyone was open on Saturday for blood draws, able to accommodate our last minute appointment, and allow me to take the blood home to ship out myself on Monday. As an autism mom who’s been through a ton of specimen shipments, I’m entirely comfortable with this, but I can totally understand why some hospitals are not quite as comfortable. I finally talked to an awesome lab tech who allowed us to come in before the lab officially opened on Saturday. The blood was shipped out Monday and we got the results on Thursday – 4 days before his surgery and just in the nick of time to review the results with our dentist before the weekend (surgery was first thing Monday morning).

Why am I glad that we got this test? For one thing, after I had reviewed all the materials that the dentist would be using, we found one contained a material (Eugenol) that was on my son’s Reactive list. If I didn’t have that test, that material would have been put in his mouth and I would have had no idea because it seemed safe from my research – it just wasn’t compatible with him. Another reason this was helpful is because 2 years later, he ended up having another dental surgery. Luckily the dental work was minor this time, but he is still unable to sit still and be compliant even for a short dental procedure. It was really helpful to have these test results on hand for reference.

Regardless of whether or not you do the Biocompatibility Test, you will want to review all of the dental material. I asked our dentist for a list of everything she planned to use, and I then I googled each one. I looked for general information, and then I looked for each Material Safety Data Sheet, or MSDS. So, here is the MSDS for 3M Filtek Supreme (which was on the initial list the dentist gave us). You can see in Section 2 that Bisphenol A is listed. This is BPA, which I didn’t want in Christopher’s mouth, so we opted not to use this. This is the MSDS for Durelon Cement. Even though it is not on the MSDS, it says here that Durelon releases fluoride (and I didn’t want that either). So, it is helpful to really do a good search on each material and not rely on the MSDS alone. We ended up using Tetric for the filling material, and EZ Pedo for the crown that he needed.

Here are some of the other resources that I found helpful when I was doing my research. I tried to take all the pertinent information and put it into this series, but you might find something additional that is useful to you. Please come back for the other topics in this series: Anesthesia and Medication during Dental Surgery, What to Expect the Day of Surgery, and Follow-Up Prevention and Care.

References and Resources

Anesthesia and the Autistic Child

What You Need to Know about Root Canals

BPA and Dental Composites – Are They SAFE?

Resin Dental Sealants and Bisphenol A Oral Exposure

Anesthesia and Autism

Biocompatibility of Dental Materials

Parents: What to Watch Out For at the Dentist

Protocol for Surgery Requiring Sedation or Anesthesia when Eating or the Gut is Disrupted

Has your Child with Autistic Symptoms Been Properly Screened for a Subset of Mitochondrial Disease Known as OXPHOS? …Probably Not.

Rescued by my Dentist