By Joanna McGowan
Sponsored by BRMI in collaboration with Jennifer Margulis
Dental surgery for a child with autism. Before we dive into this subject, it’s worth noting that dental health can be especially challenging for those with autism.
Even something as simple as filling a cavity can be an ordeal. Because many of our children have sensory, attention, and behavioral issues, many dental issues may require sedation.
In my last article, “Taking a Child with Autism to the Dentist,” we talked about preventative care. But even families with the best oral hygiene may have to deal with dental surgery.
My son Christopher has severe autism.
He has sensory issues and is nonverbal.
So, when he needed his first cavities filled, at age five, we had to take him to the hospital for dental surgery. I was extremely overwhelmed and did a ton of research.
This is the guide to dental surgery for a child with autism that I wish I’d had when we were going through this for the first time.
Be aware of upfront expenses
Before dental surgery for a child with autism, but you should be aware of how much it will cost.
You will likely need preapproval for dental surgery for a child with autism from your insurance company, especially if it is a procedure that is usually done in a dentist’s office.
In addition, if you want your dentist to use less toxic materials, be prepared to pay out of pocket.
Getting your insurance ducks in a row
Make sure that the dental office and the hospital or surgical facility have all of your insurance information for both your medical and dental coverage.
If you have more than one insurer, the dental office needs to know which is your primary insurance company and which is secondary.
We were lucky in that we had good dental insurance. In our case, this insurance paid for much of the dental surgery minus our deductible.
However, some of the non-toxic materials I asked the dentist to use were not covered.
In addition, the insurance company did not cover the dentist’s fee for working in the hospital.
We had private medical insurance and Medicaid as a secondary insurer. The dentist we were using at the time, however, did not accept Medicaid.
Our medical insurance covered the hospital’s facility fee minus our deductible. Medicaid picked up that difference. So, luckily, we didn’t incur too many out-of-pocket expenses.
Plan on insurance mistakes
Keep in mind that as the bills come in, you’ll have to be vigilant.
You will likely receive separate bills from the dentist and from the hospital or surgery center.
Make sure there are no hidden charges.
Double check that everything that should be covered is covered.
Before dental surgery for a child with autism, have the contact information of a supervisor at your insurance company. Establish a relationship with a case manager.
Having a name and direct phone number will save you a lot of time if any issues arise.
Plan on insurance mistakes and try not to get upset when you catch them. There were always insurance issues with Christopher’s dental surgeries.
After all, it’s hard enough to make ends meet when you have a child with autism who needs dental surgery. You don’t want to be stuck with a big bill that is not your responsibility.
Our first problem arose when the hospital billed our secondary insurance without first billing the primary for the anesthesia.
The second time, our primary insurance covered the surgery but denied the anesthesia, which should have been included as part of the surgery.
It was very frustrating.
But we stayed with it and got it worked out.
You will too.
Before the surgery
Consider getting a Biocompatibility Test for Dental Materials (CMRT).
The CMRT test is from Clifford Consulting and Research (CCR).
It costs over $300, and it is usually not covered by insurance.
This was a big expense for us, and a huge hassle. But in the end, I was really glad we did it.
At the time we were preparing Christopher for dental surgery, this lab test had to be ordered by our dentist. The company would not even take a payment directly from us, so the dentist had to agree to order it and then add it to our bill.
Today, it looks like in some states you can order the test directly from the company, which is easier than having your dentist act as the go-between.
Once they analyze your child’s blood, they send back a booklet listing dozens of commonly used dental materials and telling you whether or not each is suitable for your child.
The front page summarizes Reactive Components and Nonreactive Components.
Where to get the blood draw?
For this test, your child will need to have a blood draw. The blood is then sent to CCR.
CCR suggested trying www.anylabtestnow.com, which had a location near us.
We booked the blood draw online. But when we took Christopher to have his blood drawn two days later, we found out they didn’t do pediatric blood draws. Yikes!
So, I spent the next day, Friday, calling all the hospitals in our area to see if any were open on Saturday for a blood draw, able to accommodate a last-minute appointment, and would allow me to take the blood home to ship myself on Monday.
As an autism mom, I have shipped many specimens to labs. I’m experienced and entirely comfortable doing so. But most of the hospitals I called found my request highly unusual and said no.
I finally talked to an awesome lab tech who allowed us to come in before the lab officially opened on Saturday. We shipped Christopher’s blood out Monday and received the results on Thursday. Just four days before his surgery.
We were very lucky. Our dentist thought the test was fascinating and eagerly helped us make sense of the results.
Figuring out your child’s sensitivities
The dentist and I reviewed all the materials she planned on using.
We found that one contained a material, Eugenol, that was on my son’s Reactive list.
Though this material is safe for many, it was not safe for Christopher and the dentist agreed not to use it.
Review the dental materials
Regardless of whether or not you do the Biocompatibility Test, you may want to review all of the dental materials your dentist plans to use.
I asked our dentist for a list and then I Googled each material.
For each, I looked at its Material Safety Data Sheet, or MSDS. For example, the MSDS for 3M Filtek Supreme (which was on the initial list the dentist gave us), listed Bisphenol A in Section 2.
BPA is an endocrine disruptor.
We didn’t want anything with BPA used in Christopher’s mouth.
The MSDS for Durelon Cement, another material the dentist planned to us, did not mention fluoride. But then I found another source that said Durelon releases fluoride. So we opted out of using that as well. Instead, the dentist used Tetric for the filling material, and EZ Pedo for the crown that Christopher needed during his dental surgery.
Complicated and a lot of work? Yes. But better than having something toxic in my son’s mouth forever.
What about prophylactic antibiotics?
Your dentist may recommend you give your child with autism an antibiotic to be taken prior to dental surgery.
But many children with autism do not do well on antibiotics.
Most of our kids have disrupted intestinal flora, which antibiotics exacerbate.
Concerned about side effects, I did some more digging.
I discovered research that shows that there is little evidence of the effectiveness of prophylactic antibiotics.
Instead of prophylactic antibiotics, we decided to give Christopher colloidal silver, a potent natural antibacterial agent, for a few days before surgery.
What about anesthesia?
When I was researching options for safe and effective anesthesia during dental surgery for a child with autism, the most comprehensive information I found was an article, “Anesthesia and the Autistic Child,” by Sym C. Rankin, a registered nurse.
Talking to the anesthesiologist
Just as it’s important to make sure you and your child’s dentist are on the same page, it’s equally important to speak with the anesthesiologist prior to the surgery.
The best thing to do is to explain your child’s issues and your concerns, and ask to know everything the anesthesiologist plans to use.
Keep reading to learn more about the medications the anesthesiologist will likely recommend.
Make sure to let the anesthesiologist know all of your child’s allergies and sensitivities, even if you’ve already told the dentist and the hospital staff.
For example, my son has a B-12 deficiency, mitochondrial disorder, and multiple food allergies.
As uncomfortable and nervous as you might feel, speaking to the anesthesiologist directly is very important. For Christopher’s third dental surgery, we actually decided to start over with a new dentist because the anesthesiologist refused to work with us at all.
Sedation
Typically, the process begins with the child being sedated with a gas mask and then an IV is inserted.
During dental surgery for a child with autism, the anesthesia and other medications are administered through the IV and sedation is maintained through the gas mask.
The anesthesia is typically delivered at a high flow rate. You can discuss the possibility of lowering the flow rate to low or minimal, which can prevent heat loss during surgery and shivering afterwards.
If your child is used to IVs from frequent IV medication or blood draws, you also can discuss the possibility of starting the IV without using anesthetic gas.
Medications that the anesthesiologist will typically use
Pre-operative sedative
Given to the child, typically orally, shortly before surgery. This might be Versed (or Midazolam).
Given as an IV, versed is not heavily metabolized. So, we okayed this medication.
However, when we got to the hospital, a nurse handed it to us in a bright red drink. I explained that his chart clearly said Christopher was allergic to corn and could not tolerate any red food dye.
The nurse who brought it to us was visibly frustrated. “But you okayed this medication,” she said several times. Luckily another nurse stepped in to help and Christopher was given the drug intravenously.
Anesthetic gas
While fewer anesthesiologists are using nitrous oxide, many still use it in combination with other gasses.
Nitrous oxide can be problematic for children with autism and patients with MTHFR gene polymorphisms. MTHFR polymorphisms—and methylation issues—are common in individuals with autism.
In very simple non-scientific terms, nitrous oxide messes with the enzymes in the methylation cycle, and B12 and folate get all screwed up.
Print out a copy of this article from the New England Journal of Medicine and share it with your dentist and anesthesiologist to explain why you want to avoid nitrous oxide during dental surgery for a child with autism.
Ketamine is another popular anesthesia, administered with other gasses (or in other ways). But it is a hallucinogenic and has been associated with brain damage. We did not want Christopher to have this drug.
Sevoflurane is probably the safest choice for our kids. It has a low solubility. This means it doesn’t stay in the body very long and it is not heavily metabolized.
The anesthesiologist agreed to use sevoflurane by itself, not in combination with any other anesthetic gas.
What about analgesics?
Analgesics are pain-killers. Both narcotic and non-narcotic analgesics may be put in the IV given during dental surgery for a child with autism.
Narcotic analgesics
Narcotic analgesics are opioids. They work by binding to opioid receptors and blocking pain signals from the brain.
These include fentanyl, morphine, and hydromorphone (Dilaudid).
In my initial conversation with the anesthesiologist, I told her that I didn’t want to use any narcotics.
She insisted that she would reserve the right to administer narcotic pain relief if she thought it necessary.
We asked her to only use fentanyl if it were absolutely necessary.
Fentanyl is a short-acting highly effective pain reliever. Only a small percentage is metabolized.
I was worried about my son being exposed to opioids. Luckily, Christopher did not end up needing them. However, in a later dental surgery, a minimal amount of fentanyl was administered and Christopher recovered without issue.
Non-narcotic analgesics
Non-Narcotic Analgesics are anti-inflammatories that work in the body (instead of the brain) and affect the chemicals at the site of the pain.
Typically, acetaminophen (the main ingredient in Tylenol) is given during dental surgery for a child with autism.
But acetaminophen depletes the body of glutathione. Glutathione binds with toxins to escort them from the body.
Most children with autism are already low in glutathione. And there is a growing body of scientific evidence, including work published in 2024 at the University of North Carolina, Chapel Hill, and earlier peer-reviewed research by a team of scientists from Harvard and Duke Universities that identifies acetaminophen as a causative factor in autism.
So, drugs containing acetaminophen, including Tylenol, are not a good choice for children with autism.
The only IV pain medication that I did allow was Toradol (also known as Acular or Ketarolac), a non-steroidal anti-inflammatory drug.
Though Toradol has side effects, it appeared to be the safest choice at the time.
Amnestic agent
An amnestic agent might be used during the surgery to maintain sedation.
This is usually Propofol (or Diprivan).
If your child with autism has mitochondrial issues, he or she won’t be able to break down the phospholipids in Propofol. Propofol also contains eggs and soybean oil (which is important to know if your child has food allergies).
Share your concerns with the anesthesiologist so you can find a safer amnesiac agent if one is absolutely necessary.
Other medications
These medications are also commonly given during dental surgery, so they should be considered and discussed with the anesthesiologist as well.
Muscle relaxant
A muscle relaxant like Rocuronium might be used to keep the body still during surgery.
We requested not to use this. Rocuronium increases the heart rate and my son has a heart murmur.
Anti-nausea medicine for dental surgery for a child with autism
An anti-nausea medicine like Zofran might also be administered. Zofran works by blocking serotonin and contains inactive ingredients that can be problematic for children with allergies.
Lactated ringers
This solution is sometimes put in the IV to replace fluid.
My son has a dairy allergy. This solution contains lactate, which my son can’t have.
When I asked the anesthesiologist for the list of medications she planned to use, lactated ringers were not on the list. But I wanted to discuss it anyway just to make sure that only saline would be used for fluid replacement.
Our medication summary
By now you can see why it’s so important to talk to your child’s anesthesiologist or nurse anesthetist prior to surgery.
To sum it up what we did: the meds we agreed to were Versed (but not in a red corn-syrupy drink), Sevoflurane, Toradol, and Fentanyl (the last of which would be given only if absolutely necessary).
Christopher ended up needing only Sevoflurane and Toradol in the IV.
What to expect the day of the dental surgery
Request that your child’s surgery take place first thing in the morning. Granted, it is difficult to get everything together, including your child, at 5:00 a.m.
But it is much more difficult to keep your child away from food or drink if the surgery is scheduled for later in the day.
Because dental surgery for a child with autism will require anesthesia, it is likely that no food or drink will be allowed after midnight.
Christopher’s first dental surgery was scheduled for 7:00 a.m.
I kept him up a little late so he was sleepy in the car and pretty compliant.
The second time he had surgery, we were unable to get a morning appointment.
I kept him in his room as long as possible, until it was almost time to leave.
We explained to him that he wasn’t allowed to have anything to drink beforehand. But it is difficult to know how much he understands.
Thirsty, hungry, crabby, and angry with me for withholding food and water, Christopher screamed during the entire car ride to the hospital.
He was so upset that I had a difficult time calming him down in the waiting room.
What to bring for dental surgery for a child with autism
Pack a bag the night before. That way you can just throw your sleepy kid in the car and leave with no last-minute scrambling.
Here are some suggestions for what to bring:
Something comfortable for your child to wear after the procedure
Diapers, underwear, and/or pull-upsEven if your child is fully potty-trained, it is a good idea to bring extra underwear just in case. You never know what will happen under anesthesia and it’s better to be safe than sorry. Christopher was potty-trained when he had his second surgery, but I put him in a pull-up for the procedure.
A cup and something to drink Christopher was extremely thirsty after waking up from both surgeries, especially the second time. I packed his sippy cup and coconut water. A cup without a lid or straw is ideal after dental surgery to prevent dry sockets. But not all of our children can drink from a regular cup. Coconut water is a great drink because it effectively replaces electrolytes and doesn’t usually have added sugars or other crappy ingredients.
A favorite toy, book, iPad, or all three If you’re not first in line (and even if you are), you might have a long wait before the actual surgical procedure. So, you want to make sure that your child is comfortable and occupied. If you are in a hospital, you will probably be waiting in a triage area on a bed. There might be a television. Surgical centers that cater to children will probably have a waiting room area with toys and games. But no guarantees. So, you will want to bring some things to do that you know your child likes.
Copies of your paperwork Be sure to bring all the paperwork you have related to the surgery, including any articles you’ve printed out, as well as a list of the medications and dental materials you, your dentist, and the anesthesiologist have agreed on. Hopefully you will have already discussed medications with the anesthesiologist and dentist. But you will want to review it the day of the surgery. Best to have a list in hand. After all, you might not remember everything. Furthermore, you will likely be exhausted from getting up so early and frazzled from the whole experience (especially if your child is anxious).
Insurance cardsEven if you’ve already provided insurance information, you may need to provide your child’s insurance card for the hospital or facility to copy.
A driver’s license or other identification This is probably a no-brainer, but don’t forget your ID to prove that you are the parent or guardian and holder of the insurance.
Books, magazines, and your phone Some dental surgeries take hours. You are usually required to stay on the premises. So, make sure you have something to do other than sit and worry. An adult coloring or puzzle book can also help pass the time.
Healthy snacks Bring healthy food! If you are at a hospital, you can grab something at the overpriced snack shop. But it won’t be healthy and it will leave a hole in your wallet. What’s more, surgical facilities often don’t have anywhere to eat. So bring your favorite healthy foods. We like bananas and oranges because they come in their own wrappers; almonds, walnuts, pecans, and Brazil nuts are a great source of protein and vitamins; celery and carrots make the perfect crunchy treat.
What to expect when you arrive for dental surgery for a child with autism
When you get to the facility, you will have to check in. Then you will complete paperwork, provide your insurance card/s, and identification.
In addition, you will be given paperwork while you’re checking in and you may get more later.
Make sure to keep all of the paperwork you receive—you might need it later for insurance or other purposes.
Christopher’s first surgery was in the hospital. For that one, we were taken back to the hospital bed right away. We waited there with the nurses for the dentist and the anesthesiologist.
His second was at a surgical facility. For that procedure, we waited in the waiting room for a half hour or so and then we were taken back.
At that time, I tried to explain to him that the doctors were going to make his mouth feel better and that he was going to go to sleep so that they could help his teeth.
I told him not to be scared, that I would be right outside. Finally, I reassured my son that I would be there when he woke up.
Once they wheel your child away, the waiting begins. Christopher’s first surgery was pretty extensive and took about 5 hours.
The second one was much quicker. It took less than 2 hours.
After dental surgery for a child with autism
When the dentist and anesthesiologist finish, a nurse or nursing assistant will bring you back to be with your child.
This is the time to ask any questions about how the procedure went. Be sure to write down what the medical staff tells you, or to voice record it, as you might be feeling anxious and may not be able to pay as close attention as you would like.
Expect your child to wake up out of sorts. Christopher was very grumpy because of the IV in his arm.
At the surgical center, they quickly removed it.
But at the hospital, the nurse told me that she couldn’t remove the IV until he calmed down. Which he didn’t, because he was upset about the IV.
Finally, a kind nurse realized this and removed it and he instantly calmed down. He then drank (gulped!) over a liter of coconut water.
Post surgery pain management
Your dentist may recommend pain medication following surgery. But we opted to try to use homeopathy for Christopher’s post -op recovery.
Homeopathic treatment for chronic conditions is customized to each individual. It’s best administered using the guidance of a licensed homeopath.
But acute conditions can respond to the same type of treatment in almost everyone.
Additionally, homeopathy is safe and easy to administer.
So, it can be a very good choice for dental issues, including surgery recovery.
Homeopathic pellets are made with milk sugar. For most children with autism, the amount is so minute that it does not affect them.
However, if you want to avoid dairy, most remedies are also available in lactose-free liquids.
Be aware that most liquid formulations have alcohol in them.
For my son, alcohol is more problematic than a miniscule amount of lactose. Consult with your doctor or medical provider regarding your choice of pain management, homeopathic or otherwise.
The specific remedies we used were:
Belladonna 30C—given before surgery for tooth pain
Aconite 12C—given before surgery for anxiety and fear
Arnica 30C—given before and after surgery to help prevent bruising and to alleviate pain and soreness
Ruta 30c—given before and after surgery for quicker healing and reduced pain. I alternated this with Arnica, giving him pellets every three to four hours for two days following the surgery
Hypericum 30C—given after surgery for nerve pain and to help nerve regeneration
Calendula 30C—given after surgery for pain. I alternated this with Hypericum and gave it to Christopher every three to four hours for two days after the surgery
Phosphorus 30C—given after surgery, to alleviate nausea
Nux Vomica 30C—given after surgery, for irritability and to detox from anesthesia. I alternated this with Phosphorus. I gave him this and the Phosphorus just after surgery and for one additional day
If you’ve never used homeopathy before, a schedule of pellets might look something like this: On the day of and the day following the surgery, give your child arnica and hypericum at 12 p.m. Then, at 3:00 p.m., give your child the ruta and calendula. At 6:00 p.m., give arnica and hypericum again. At 9 p.m., if your child is still awake, ruta and calendula.
The next day, in order to gradually stretch the time between them, you will give your child pellets four hours apart instead of three. After that, you can give homeopathic remedies as needed for the rest of the week. I kept my eye on Christopher and checked in with him. When he got ornery or seemed to be in pain, I gave him more medicine.
The rest of the day after dental surgery
I had honestly thought that after the surgery, Christopher would be wiped out the rest of the day.
My plan was for him to lie on the couch watching movies.
But after a few hours, he was ready to play!
Christopher recovered amazingly well. Some children, however, may be low-energy and irritable for days.
Like adults, some kids react more strongly to anesthesia than others, and it takes time for their bodies to clear the medications.
Soft foods only after dental surgery for a child with autism
The dentist will instruct you to only give your child soft foods. After each dental surgery, Christopher drank a lot of peppermint tea with honey. He also sipped chicken broth and ate some applesauce.
It didn’t take long for Christopher’s mouth to heal. A day after dental surgery, he was back to eating his normal foods. But every child’s recovery time is different.
I hope you find this helpful if you are ever facing dental surgery for your child with autism.
I know it seems daunting, but once I understood all this I felt much better.
Our son Christopher is 17 now.
His oral hygiene has greatly improved.
These days, he’s able to brush his own teeth with an electric toothbrush!
Still, he’s had a total of three dental surgeries and will have another one next year to remove some crowded teeth.
I’ve referred back to this guide to help me prepare every time. Not having to start all of the research from scratch has made the process so much easier.
I hope it does the same for you!
About the author:
Joanna McGowan lives outside of Philadelphia with her husband, three children, and one giant dog. Her oldest son, Christopher, has severe, regressive, nonverbal autism. Joanna is a school counselor, yoga teacher, autism advocate, and infrequent blogger on her website HolisticallyWhole.com. She has a BS in Psychology, an MA in Student Services, and certifications in School Counseling and Yoga. Joanna has volunteered for various autism organizations, including The Autism Community in Action (TACA), the National Autism Association (NAA), and her local church’s Disability Ministry, which was awarded the 2015 Loyola Press Opening Door award for its inclusion efforts. She is also the author of a children’s book, You Are My Star. The book’s illustrations are drawn by children on the autism spectrum and all the proceeds are donated to TACA. In addition, Joanna also volunteers at the SPCA to support her daughter’s project, Cara’s Christmas Wreaths, to raise money for homeless animals. Joanna is committed to fighting the uphill battle for a healthier, less toxic world for our children. She is also very tired and drinks way too much coffee. A different version of this article first appeared at HolisticallyWhole.com.
*The information, opinions, and views expressed in this content are solely those of the writer. This material is provided for informational purposes only and should not be considered as medical or professional advice, or a substitute for independent research and verification. Always consult your healthcare provider before implementing any new regimens.