Oral care for people with autism

DISCLAIMER: What I share in this post is my PERSONAL opinion and my personal experience with products etc. I DO NOT work for a company that sells any of the items listed. This is not meant to provide lots of scientific information or research and is simply what has worked for me and what I understand to be true and correct.


This post is for all of my comrades who struggle to know how to help their children with autism have healthy teeth. I am a dental hygienist and a mother to a nine-year-old boy with autism. I know first-hand how difficult it is to take care of teeth when there are struggles with sensory issues, diet issues, behavior issues, and might I also admit fatigue issues from raising a special needs child. I found this post on facebook today:  

Michelle Harvey Says
my son was diagnosed with severe autism when he was 18 months, around the same time he stopped eating, I tried everything to get him to eat, he eventually started to eat but had a very limited diet, chips, crisps and cookies!! After 6 long yrs of constant encouragement I finally have him eating various other foods, but have just been told by his dentist that he needs to have all of his top teeth and most of his bottom ones taken out!! (he will not let me brush his teeth at all, he has severe sensory issues) I am so worried about what to do, should I let the dentist do what needs to be done or not I'm worried he will stop eating afterwards, and if he stops will he ever start again!!! The dentist says he must be in pain but it's hard to know as my son is non verbal!! Was wondering if anyone else has had similar problems!!

Following this post there were 71 comments, most of them with similar frustrations, worries, and problems with daily oral care. For this reason I am writing this post directly to Michelle Harvey and all other Mom's who are faced with such a devastating problem.

This is going to be a long post, so bare with me. But if you stick it out I PROMISE it will provide you some useful tools that can help you and your child with autism.

ORAL HEALTH 101

Glossary:
Gingiva- the scientific term for gums

Gingivitis- inflammation or swelling of the gums.

Periodontal disease- gum disease that affects the gums, the bone surrounding the teeth and the connective tissue that holds the teeth in place

Caries- technical term for cavities

Plaque- the sticky stuff on your teeth. It is comprised of bacteria and bacterial byproducts.

Calculus- hard deposits on the teeth. Also known as "tartar"

ITS ALL ABOUT THE BUGS.

Maintaining oral health is all about the control of bacteria. There are over 600 different kinds of bacteria that live in the oral cavity. It is important to understand that different bacteria cause different problems. Some bacteria contribute to dental decay (cavities) while other types of bacteria contribute to periodontal disease or gum disease including gingivitis. The products and ideas I am giving you today are different ways to control, manipulate, remove, or change the bacteria in the mouth.

In order to understand what our goal is and to understand what the disease stages are we are first going to look at a healthy mouth.

This is an example of healthy gums. You will notice they are pink, there are sharp edges pointing in between the teeth and if you look closely you will notice the stippling, like an orange peel. This means the gums are really healthy.

After brushing within hours the bacteria in the mouth will begin to grow and form communities called biofilm. Biofilm is a living, breathing community of bacteria. Believe it or not bacteria can communicate with each other and find ways to thrive. It is our job to constantly remove that biofilm. As the bacteria divide and the biofilm grows our bodies will try to fight off the invaders and we see the first stage of disease. Gingivitis- shown here.

You know how it looks when you get a splinter or any other type of skin injury? The area turns red and gets swollen. The same thing happens with your gums. Notice the color difference in this picture. See how it is more red in between the teeth and the gums look "puffy" and not uniform. This is how gingivitis looks. Most kids have gingivitis to some extent, kids with autism almost always have more gingivitis than their typical peers because they have an especially difficult time with brushing. As you know for yourself, brushing includes a lot of sensory information: taste, texture, smells etc. Gingivitis can cause the gums to be more sensitive and it can be painful when brushing. Bloody toothbrushes ARE NOT NORMAL. This means gingivitis is present.

If gingivitis is not resolved it can lead to periodontal disease or gum disease. This is what it looks like:

Notice how the teeth look "long"? The supporting bone and connective tissue has been destroyed. My entire education examined exactly how this happens, and why. I could go on for hours explaining the process but for our purpose I only need to say it was a combination of the bacteria present in the mouth and the host-response- meaning how the body responded to the bacteria. Once the bone has been lost it CANNOT be restored. The disease can be maintained, but it is a life-long condition that needs to be maintained with the care of a good dental team. Left untreated it can lead to toothloss. Unfortunately many people have periodontal disease and never feel pain or discomfort. It is a silent disease.

Cavities are the result of acidic attacks on the teeth. Your mouth maintains a normal, healthy pH. Sugary foods and carbohydrates are a favorite of bacteria. They digest the food producing acid which eventually breaks down tooth structure and causes cavities. Once a cavity has broken through the enamel it has to be surgically fixed (getting a filling). If it has not broken through the enamel there is a chance to fix it with a remineralization paste (see below).

HOW IMPORTANT ARE BABY TEETH.... REALLY?

Baby teeth fall out, so why should you drain your emotional tank fighting with your child to protect them, why should you spend money restoring them, and if they do come out why should you use a space maintainer?

Although it can be emotionally draining, and physically trying you should do your best to protect the health of baby teeth for several reasons.
1. It takes a very, very long time to teach children with autism habits and routines. The time you invest now will help your child understand the reality and importance of daily oral care.

2. The bacteria that infect baby teeth can infect adult teeth and may lead to cavities in adult teeth before the tooth is completely erupted.

3. Baby teeth hold the place for permanent teeth. If a baby tooth is lost prematurely it can keep a permanent tooth from erupting in the right place which may lead to crowded teeth, misaligned teeth and eventually a need for braces. Yeah, right like my child will EVER wear braces. Talk about a nightmare- an autistic child in braces. High functioning kids will be ok, but not for those who have more severly affected kids like mine. I love straight teeth but straight teeth is not the goal here. I am talking about teeth and jaws that function and are stable and are easy to clean and sometimes braces are needed to provide this.

4. If you know your child has a cavity and you are considering just let it go, read carefully to this. The make-up of a baby tooth is different than a permanent tooth. The enamel is thinner and therefore things can go really bad with a baby tooth really quickly. If it needs to be fixed, fix it. Don't wait- it can lead to pain and extractions or root canal treatment faster than a permanent tooth. There is an exception to this rule. If the Dentist can see on an x-ray and based on the child's age that the tooth will be falling out soon than decay can be left alone. Just do your best to keep it clean. Find a good dental home and trust their judgement.

5. If left untreated decay can lead to an abcessed tooth. Keep in mind the infection can enter the bloodstream and travel to the brain. A young boy named DeMonte Driver was killed by an abscessed tooth when the infection went to his brain. So tragic.

6. Unfortunately, sometimes teeth have to be extracted. In Michelle's case there may be too many teeth involved that cannot be fixed and it may be a potential for greater health problems if left untreated. And sometimes if the tooth is too far gone there is not anything to restore as with a root canal or a crown. Depending on the number of teeth extracted there may not even be a reason for a space maintainer. I have three cousins who have had all of their upper front teeth extracted, and despite a large space left open for a long time the permanent teeth erupted in the proper place.

TELL ME WHAT TO DO ALREADY!

Unfortunately there is not a magic rinse or toothpaste that replaces the need for brushing and flossing. It simply needs to be done every single day twice a day. It is critical to mechanically remove the plaque and bacteria that form on the teeth and gums. Here is a look at some different brushes.

Spin brushes are inexpensive and make brushing fun. Some kids with autism really, really like the vibration.

If you find that a power brush is the ticket you might consider investing in something like the Phillips Sonicare for kids. It is rechargeable, and you simply replace the head. I personally love the Sonicare and my son does too. I would not go out and purchase the more expensive brush like this without trying the cheaper version first though.

There are children that HATE the bristles on a toothbrush. I have found this Banana Brush to be the best way to introduce a toothbrush and usually leads to a regular brush. It is made of silicone (I think) and feels soft and a little squishy. Almost like the chew toys that kids use for oral stimulation. The bristles are not bristles and are made of the soft material and provide a great gateway to a regular brush.

If you simply cannot use any type of brush try using a washcloth. Anything that can remove the plaque will be better than simply not doing anything.

I DO NOT RECOMMEND TOOTHETTES! They are simply too flimsy and do not do a good job of removing anything. They only reason to use this would be to help your child let you put something in their mouth, but if you think they will want you to always use the same "tool" then do not even bother.


XYLITOL, XYLITOL, XYLITOL

Xylitol is a sugar alcohol that can be found in different fibrous plants and foods, like tree bark and corn. The chemical make-up of xylitol is different than regular sugar. This is really important to understand because, the bacteria love the sweetness of xylitol and will want to eat it up. Once the bacteria take in the xylitol it cannot be broken down due to the different chemical make-up and the bacteria die!! If xylitol is used on a regular basis it will prevent cavities and ear infections!!! Something that every single child with autism I know has struggled with at one time or another. Xylitol is great for diabetics as it does not cause a rise in blood sugar. Another great benefit of xylitol is that it will make the surface of the tooth really slick and the bacteria cannot stick. This will help decrease the amount of plaque AND kill the bacteria.  Xylitol can be found in toothpaste, mints, gum, mouthwash, candy etc. When shopping for xylitol products you want to be sure of two things:
1. That xylitol is one of the first three ingredients
2. That xylitol is the ONLY sweetner. If is also has sorrbitol, manitol or any other -itol's it is not pure enough.

How do I use xylitol?
Strive for 5 exposures every day. This is easier than you think. Here is how we do it in my family
1. Brush with xylitol toothpaste. We use Spry made by Xlear. You can also use the mouthwash if your child is capable
2. After breakfast-  xylitol candy or gum
3. After lunch- xylitol candy or gum
4. After dinner- xylitol candy or gum
5. Brush and/or rinse with xylitol

Here are some of my favorite xylitol products that I use personally.

This is the toothpaste my husband and I use. It is mint flavor but not overpowering. 

I LOVE the kids toothpaste. It comes in a strawberry banana flavor and is very, very mild. My son who has a difficult time with strong tastes has absolutely NO PROBLEM with this paste. Even on the days when we simply cannot brush I will put some on my finger and swipe it on his teeth. If I cannot remove the plaque at least I can try decrease how many are in his mouth available to harm his teeth and gums.

You can buy the gum in larger quantities in the small jars or in the blister pack as seen here. Several flavors to chew from. A note about xylitol gum: the flavor does not last long. But it is not supposed to. Chewing and chewing for non-nutritional reasons is not good for the jaw. They did not design it solely for that purpose it is just that the xylitol gum does not keep the flavor forever and that is ok!

The mouthwash is not overly powerful like many mouthwashes, but it does leave a really nice, fresh feeling after use. If your child cannot swish and spit you can simply dip the toothbrush (or washcloth) in the mouthwash to get it in the mouth. And unlike fluoride, it is safe to swallow. 

This is a great delivery system for infants. You can put some xylitol gel into the pacifier and the child sucks on it getting the xylitol. It is never too early to start! Safe to swallow.

This product is used for people with a dry mouth. Dry mouth can be caused by medications. A mouth low in saliva can lead to more cavities. Even my son likes this spray. I keep it in my purse and give him a few squirts after a really sugary snack if I do not have gum or mints. He loves it! 

Some of the xylitol candies. Really tasty, lots of flavors. Easy to tote container. How about using these in behavioral therapy rather than candy that promotes cavities. 

It is really easy to add xylitol to your daily life. It comes in granules like this and can be used in lots of things. Sprinkle some on top of fruit, cereal or make your own popsicles. It is much sweeter than regular sugar so use sparingly. You can bake with it too. BUT, you cannot bake with xylitol if the food needs to rise- like in breads. Just as the bacteria cannot break down the xylitol, neither can the yeast. Be careful about making juice with xylitol because in large amounts in can be a laxative. Or if you need a laxative effect, go ahead and make that picture of xylitol sweetned kool-aid!

If your child suffers from chronic ear infections, allergies, or asthma it would be highly beneficial to use a xylitol nasal spray. It works the same way in the nose, and ears as it does in the mouth. The bacteria die once they take it in and it makes the surface really slick so they cannot stick like they usually do. Use once a day. 



These are Dr. John's Herbal Lollipops. They are made with licorice root and are an orange flavor. They help prevent cavities! The recommended use is one sucker in the morning, one in the evening for ten days straight. Do this every three months to prevent cavities. It does feel a little strange to hand your child a sucker and not worry about what the damage is done, but don't worry. It PREVENTS cavities. You can purchase them at http://www.drjohns.com/?i=herballollipops. They have a plethera of xylitol flavored candies and suckers. Stock up!

PROBIOTICS

No doubt you know that probiotics are beneficial for your digestive system. Probiotics are also a really great way to improve oral health.

The product that I like best and know the most about is made by Oragenics called EvoraKids. You can find this product in natural health food locations. The bacteria used in this product is actually derived from the oral cavity rather than the gut. This is a really great way to help manipulate and control the bacteria in the mouth when removal is difficult and not enough to maintain health.

REMINERALIZTION

There is a cyclical process that happens with our teeth. It is a battle between demineralization (caused by acids in the foods we eat etc) and remineralization. If it tips too much to the demineralization then we end up with cavities. This is a product that has to be purchased through a dental office. MI Paste is a great product that most dental professionals know about and keep in the office. I recommend it all the time for sensitivity, white spots from braces etc, but it uses casein- a milk protein that a lot of kids with autism are allergic to. The product I recommend and love is made by Voco and called Remin Pro. It does not have the casein protein and instead uses xylitol which you now know is really beneficial.

It is a creamy paste and very easy to use. After brushing you simply put some on your finger or on a q-tip and swap it all over the teeth. It is not a toothpaste, and if used on a toothbrush it will make the bristles gunk up and stick together. You can use it once or twice a day. I use it at night on my son. The taste is not offensive by any means and makes me feel better after having all those snacks throughout the day and during therapy.

FRIENDLY FOODS

Some foods are better for your mouth than others. One of my mentors, Shirley Gutkowski travels all over talking to dental professionals about helping their patients improve their oral health without nagging people all day about brushing and flossing. Here is a short list of foods that research shows are beneficial for oral health

• Blueberries
• Cranberries
• Green tea
• Garlic
• Raisins
• Licorice root
• Cheese

What you drink can have a BIG effect on your oral health. There was a research study that took pieces of extracted teeth and weighed them before and after they were soaked in different kinds of popular drinks. This helped us evaluate what kind of damage different sodas, juices, etc. Here is the take away. Citric acid in any form is terrible for your teeth! The soda you need to stay away from is MOUNTAIN DEW. Do not drink it! Every time I see someone with a Mountain Dew I always want to take it from them! Weird, I know. We like soda in my family and my son loves it. We use it as a motivator for him to do things he does not want to. The smarter choice is Root Beer. In the research study I am referring to, A&W Root Beer was the best choice for soda. And better than a lot of juices too. Probably because it is made with licorice, which now you know is good for teeth!

QUANTITY VS FREQUENCY

Would you believe me if I told you it was better to drink 44oz of soda all at once than it was to sip 20oz of lemonade all day? Every time we eat or drink the pH in our mouth changes- to be more acidic which is bad for our teeth. Our mouth works diligently to fix that pH to protect our teeth. Keep in mind that the frequency of what you eat or drink is more important than the quantitiy (except for your hips- but that is not my speciality). What does this make you worry about? Yep, ABA therapy or any other type of situation where food is offered as a reward. Just keep that in mind and do the best you can to overcome the problem. Offer xylitol candies instead of skittles or whatever you use. Have your child finish their juice or soda (with a meal is best) in one sitting rather than sipping on it all day. Take what you know and make it work in your life. Knowledge is power.

If you have lasted this far, I commend you. It has taken me several hours to get this information from my brain to the page. It says a lot about you and your dedication to your child. In my next post I will offer some helpful tools for visiting the dental office.

Oral health is a critical component to overall health. Children with autism already have so much they need to overcome and they need everything working in proper order. A toothache can be detrimental to a nonverbal child. It can be so difficult to know for sure what is wrong and whether or not your child is in pain. I know that it can be difficult and I hope with all of my heart that this information will be beneficial for you. After reading Michelle's post there was a fire inside me that could not be quenched until I accomplished something to get the word out. There are ways other than simply brushing and flossing to keep your child's mouth healthy.

From one mama to another I hope you know how much my heart aches for those of you struggling to do what is best for your child. My son just had his first cavity. I was pretty proud that he made it to 9 without any cavities. We had to go to the hospital to have him sedated with general anesthesia. Even as a hygienist and with all the knowledge and tools I have it still happens. It was difficult for him the following days after surgery and he tried for weeks to pull his stainless steel crown out. Not to mention the 1,500 dollar bill from the hospital, $300. from the dentist, and $900. from the anesthesia docs even after my insurance kicked in, and I have good insurance. All for one stainless steel crown, 4 sealants and some x-rays. That is too much for families, especially with the costs of behavior therapy, speech therapy, occupational therapy and every other therapy these kids need. It does not have to be another difficult challenge associated with autism as long as you are armed with information. I hope this helps, I pray this helps for you and for your special little child.

Lots of dental love from a Mama that cares.