There have been previous posts in this blog about dental treatment for those with autism. I am sure readers with older children have already found what works for them. Many people are not regular readers, so there is some repetition in today’s post.
There is no single best solution for the dentist because your options are very different depending on where you live and your budget.
In other countries there are more legal restrictions. Some countries with universal healthcare have well organised free solutions for those with special needs, but you may have little choice.
In many countries all the options are pretty bad.
It looks like US dentists are taught two broad options: -
· Sedation
· Immobilization
I think they are often missing a missing a third option, D-Termined or similar, which I think is the best one.
Sedation
There are several levels of sedation, all the way up to deep sedation and finally general anesthetic.
There are legal restrictions on how far dentists can go with sedation and this varies widely depending on where you live.
Where we live the dental clinic can give you local anesthetic and no more. In the UK light sedation and moderate sedation is permitted. For a higher degree of sedation, you need to be in a hospital, with all the emergency back-up.
Intravenous (I/V) sedation is quite common for those with anxiety, but you have to sit still while you are connected up.
General anesthetic seems to be very commonly used for special needs kids and I presume the adults they become, of whom we hear very little.
Immobilization
I had never heard of immobilization, probably because in many countries it is illegal.
In the US immobilization is widely known. Some people think it is great and some people do not.
The patient is physically attached to the dental chair so that they cannot move.
D-Termined or similar
There is a third option, which you might just call “good dentistry”. I eventually found two dentists like this. They break everything down into steps and make sure the child gets familiarized with each step, before moving on to the next. They are not in a hurry and they try to make the experience as fun as possible, inflating surgical gloves like a balloon etc.
One US dentist developed his own system in the belief that most people with special needs can be treated conventionally and should not need to resort to general anesthetic.
Dr Tesini named his method the D-Termined program. More than a decade ago he made a training DVD for fellow dentists which was available for free, thanks to a supportive charity. Much more recently he published a peer-reviewed paper showing its effectiveness at reducing the need for general anesthetic.
D-Termined is ABA applied to dentistry. Everything is broken down into simple steps. Once you have mastered being able to sit still in the chair and keep your arms still, you move on to learn about all the gadgets the dentist can use. Eventually, after a few visits, you move on to a simple actual procedure, like polishing/de-scaling teeth.
Keeping you arms still is step our new dentist does not teach/insist on. This is a mistake, since it can be taught and flapping arms can be dangerous.
I did acquire the DVD training by Dr Tesini ten years ago and tried without success to find a local dentist interested to apply it.
You might wonder while all pediatric dentists are not at least aware of the D-Termined program. Apparently having learned with D-Termined most patients can successfully transfer to any other dentist. This would save a huge amount of money in admissions to hospital for dental work.
Effectiveness of the D-TERMINED Program of Repetitive Tasking for Children with Autism Spectrum Disorder.
PURPOSE:
The purpose of this study was to compare the effectiveness of the D-TERMINED Program with standard behavior guidance techniques (SBGTs) used for children with autism spectrum disorder (ASD) in a private dental setting.
METHODS:
A retrospective data analysis was performed from records of children with ASD who received treatment using either the D-TERMINED program or SBGTs at two private dental practices. Data were analyzed using chi-square, Fisher's exact, Wilcoxon Signed Rank, and Mann-Whitney U tests and logistic regression.
RESULTS:
Forty-four charts (22 in each group) were selected from office visits between 1999 and 2012. Children in the D-TERMINED group were significantly younger (P=0.01). There were no significant differences between groups regarding gender and dental care characteristics. Patients treated with the D-TERMINED program showed a significantly greater improvement in behavioral scores compared to the control group (P=0.03). Additionally, children treated with the D-TERMINED program had significantly lower referrals for dental treatment under general anesthesia (P=0.04).
CONCLUSION:
The D-TERMINED program may help children with ASD learn the cooperation skills necessary to receive treatment in a dental practice, which might impact health care cost effectiveness.
In Monty’s dental training program, we practised at home with an electric drill. Monty made a burning smell drilling into some old pieces of oak. So, he got used to strange sounds, vibrations and smells. We practised with a syringe how the anesthetic is applied.
Costs in the US
A survey by TheWealthyDentist.com reports an average cost of $482 for IV sedation. General anesthesia can cost $300-$1,000 or more and averages about $600-$700, depending on the complexity of dental procedure.
Monty and the Dental Marathon
About a month ago Monty finished his dental marathon of fifteen visits to the dentist since March. It was entirely successful but it did take much longer than I had expected.
I got to learn about restorative dentistry. In Monty’s case his decay was deep and could not be repaired leaving the nerve intact in a single visit to the dentist. A live tooth has the nerve intact and has its own blood supply. I wanted his two problematic teeth to retain their nerves.
The dentist drills out as much decay as possible and then adds layer of Calcium Hydroxide, which is very alkaline. This then causes the nerve to withdraw slightly and slowly the pulp above the nerve is converted to dentine (so-called reparative dentine), you add a temporary filling and wait for 6-7 weeks. Then you remove the temporary filling, drill a bit deeper, again avoiding the nerve, add a layer of calcium hydroxide and another temporary filling and wait another 6-7 weeks. The end result is that you can remove deep decay without removing the nerve.
On two rear teeth Monty had temporary fillings four times before he got the final permanent filling. That means being injected with local anesthetic ten times and ten trips to the dentist.
In addition, he has visits for fissure sealant to be applied on the remaining teeth.
Our original “nice dentist” from 4 years ago went on an extended maternity leave and it was toothache that prompted the need for a different one. Fortunately, we found a nice new dentist who in the last couple of years developed an interest in treating autistic kids. Even she was not keen to work on the rear teeth. She can only give local anesthetic; she cannot use US-style physical immobilization. Her suggestion was to make an appointment for dentistry under general anesthetic. So off we went to the local University hospital where, as expected, they wanted to extract both teeth under general anesthetic, all they do is so-called “radical dentistry”, but even for this option you wait 3-4 months for an appointment.
I asked why can you not save the teeth? Like with a typical child.
I was told that Monty would struggle with local anesthetic, the rear teeth are particularly difficult. Some kids with autism can struggle with the loss of sensation and end up biting themselves quite badly.
I said not to worry about the local anesthetic, we would easily get him through that part. Yes, he has autism, but he is no longer typically autistic - he is now "different". We do not avoid challenges; we try to overcome them.
Our new dentist basically said she would only try and repair the teeth if there was a plan B for emergency extraction. Such an extraction is not possible at the government hospital and she would not be able to do it either.
More than 10 years ago when Monty needed emergency dental work, we had to take him to a neighbouring country where it is legal to have general anesthetic in a dental clinic.
Fortunately, a local private medical clinic that does minor operations has recently started doing some dentistry and they can offer general anaesthetic. So off I went there to see if they would help. I met a very pleasant dental surgeon who had just relocated home from Chile and he also thought teeth should be repaired and not extracted. He was happy to provide the plan B.
Feeling much happier, our dentist agreed to proceed and our dental marathon began.
We started in winter, so no allergy-affected behaviour, and things went very well. The dentist told me “it was exactly as you said it would be”, Monty could comply with treatment like any typical teenager. Anaesthetic no problem, drilling no problem. Monty get to choose the music during the dental procedures. It was stress free.
As we moved to spring and then summer, compliance did fade slightly. The worst day and in fact the only really tough visit was the for the final drilling and filling on the lower tooth. The anesthetic did not seem to have gone in exactly the right place, Monty was not happy, the anesthetic was repeated, to no avail. I had to keep him and indeed the dentist as calm as possible. I had to stand in front of the dental chair and talk to Monty the entire time, reassuring him, counting up to 20, down from 20, having him pick the number etc to distract him from the procedure.
That was a visit the dentist will not forget. Monty on the other hand got out of the chair as if nothing had happened.
For dental visit number 15 and the final drilling and filling on the upper tooth I had started to use DMF and Azosemide; there was no anxiety, everything was like in the winter. Monty was a model patient and the dentist was sad that we had finished our marathon.
Dentistry is not expensive where we live, so our 15 visits probably cost about the price of one composite adult filling in the US.
Gangnam Style
Monty became very comfortable with his visits to the dentist, getting the dental assistant to put his favourite music to play. For his final visit getting permanent filling number two, he requested “Gangnam Style”. With his mouth full of cotton wool (saliva absorbers) I had no idea what he was saying, but the dentist understood and it was time for K-pop.
Papoose Board
Until very recently I had never heard of the Papoose Board and its use in dentistry; where I come from it is actually illegal to use it.
A papoose means a native American child. A papoose board is like a straight jacket, but it immobilizes the entire body, including your head. It is like being encased in Velcro straps.
During my many visits to the dentist I learnt that a common problem treating children with autism is that they do not sit still in the dental chair and they flap their arms about which can make it difficult to get any work done. It usually requires the help of the dental assistant so that the dentist has two arms available for her work.
So, you can see where the idea if strapping the child to the chair comes from.
Personally, I cannot think of anything worse during visit to the dentist than having my arms strapped to my body for 30-60 minutes. What if you want to itch your nose? You are non-verbal so you cannot ask the dentist to do it for you. That is just me.
There are horror stories in the US media about the use of a Papoose board, but there was a recent post on the NCSA website saying how great it was for one child with severe autism. It is a case of finding what works for your n=1 case.
In Dental Care for Severe Autism, a Papoose Board Comes to the Rescue
Conclusion
Finding dental care for someone with autism is very often a huge problem. In some countries you get free care that is well organized, but you may not get any choice as to what is done, or indeed how.
Many people with autism routinely have all procedures using general anesthetic, that is OK if you have a qualified anesthetist monitoring the situation. It must be better to learn how to sit in the chair and have regular dentistry using local anesthetic. It is much cheaper and much safer.
I personally think Gangnam style dentistry is much more preferable to the native American style. Yes, it will take longer, at least until the first filling has been completed successfully.
There clearly are people with autism who accept being strapped to the dental chair with Velcro and some who enjoy it. Temple Grandin is a big fan of squeezing/pressure therapy, so I expect she would enjoy being strapped to a Papoose Board.
Another thing I came across was that parents in some countries are not present while the child is having the dental procedure. I came across one lady furious to find out that her child was strapped up in a Papoose board, she was totally unaware it was being used, until she left the waiting room to look for her child. I suppose it depends if having the parent present is helpful, or just adding to the stress - both cases are possible.