The dentist. On a good day, with a non-disabled person with no communication issues and no dental issues … we still dread going.
So add in some communication issues, sensory issues, autism, feeding and swallowing issues, noise and pain threshholds that are different … and it can be an absolute nightmare.
The past year for us has been what I call “The Year of the Dentist.” Poor Kevin was dragged to four or five different dentists in hopes of getting his issues taken care of. I finally got them resolved … more on that later.
It all started innocently enough. We had been visiting the same pediatric dental practice for several years. They advertise as catering to children with special needs. Kevin grew increasingly agitated at the visits, until one time, after the visit, the dentist asked to speak to me privately. “We’re going to have to ask you to go someplace else,” she said.
I cried, literally cried, and said, “Please give us one more chance.” She agreed. And I don’t know what happened, other than a new hygienist tried some new cleaning techniques, and he LOVED it. He would actually reach for the instruments and place them in his mouth himself.
All was good. Other than fighting with my insurance companies each time, because he requires four cleanings a year instead of the usual two, we were doing fine. For almost 10 years! It was lovely.
Then, it all started last Labor Day. I could tell that his mouth was bothering him and that he had loose teeth. He refused to eat for several meals in a row. Labor Day weekend, I took him in as an emergency visit to our dental office, though we saw someone new because it was an unplanned visit. She took a look at the situation and agreed that there were some teeth that needed to come out.
“It’s just a simple gauze pull,” she said. “Just go home and take a piece of gauze and you can pull them out.”
Seriously? She was suggesting DIY dental work?
“If it’s so simple, can’t you just do it? Can’t we do it here?” I asked. She hemmed and hawed and came up with several lame reasons why it couldn’t be done there, today. Reasons like “recovery time.”
I left, very angry, and have never been back since.
That left me with a huge problem though. I still had a kid with a sore mouth and now we had no dentist. On the recommendation of a friend, I took both boys to another dentist. Much better overall experience for both boys. However, he wanted to take a "wait and see" approach to pulling the teeth and didn’t feel it was urgent.
I won’t bore you with each step of the process … but what it came down to was this:
- In addition to Kevin’s communication and sensory issues, he has a seizure disorder and severe sleep apnea. This makes him a high risk patient for anesthesia.
- The children’s hospital where Kevin sees all of his specialists does not have a large, working dental clinic.
- They have 1 or 2 dentists there, but they canceled our scheduled appointment and said that their dentist “had not completed the correct paperwork” to see Kevin.
- Very few local dentists, including this new one we saw, have privileges to use that hospital’s operating room.
- The hospitals where they did have privileges, their anesthesia departments would not touch Kevin because of the seizure disorder.
- The dentists who have privileges at the children’s hospital have very long wait lists, usually 6-9 months.
- The special needs dental clinic in the city will only see you once a year; Kevin requires four times a year.
- Oral surgeons and other dentists who do surgery in a surgery center will not touch Kevin, due to the seizures.
I dragged Kevin all over PA and DE, searching for a dentist that could/would [treat him] with an anesthesia department who was qualified to deal with Lennox-Gastaut. It was a nightmare, time consuming, frustrating and painful for him and he lost weight due to mouth pain.
A real dental clinic that serves disabled children
Finally, success! Someone suggested that I call St. Christopher’s and I did. They saw Kevin within two weeks and he was scheduled for his dental surgery six weeks after that.
The care is extraordinary–lots of teaching doctors from local medical schools. They had experience with anesthesia and seizure disorders. There wasn’t a long wait time. The facility is nice. I have nothing but positive things to say about St. Christopher’s, except that it takes me over an hour to get there, but what can I do? They have a dental clinic of almost 20 dentists and oral surgeons–not including the anesthesiologists, nurse practioners, nurses, etc. For now we just make the best of it and visit other interesting things in the city when we go.
Not all dentists who say they are special needs dentists know all disabilities
This is my main take away from this whole experience. Special needs means different things to different people. Just because a dentist says they serve the special needs population doesn’t mean that they serve all of us.
Questions to ask a potential special needs dentist
- Do you take my insurance?
- What is your policy for emergency appointments?
- Do you serve the special needs population?
- What does that mean to you, to be a special needs dentist?
- My child has XYZ, are you familiar with that?
- What techniques do you use to treat a child who may resist treatment?
- Do you have privileges at any of the local hospitals? Which ones?
- Do you work with any anesthesiologists who work with high risk patients? Can you elaborate?
- My child is considered high risk because XYZ. What would you recommend?
- My child’s feeding/dental issues include XYZ, can you tell me your experience with that?
- Are you willing to allow me/spouse to assist in restraining my child if necessary?
- What restraints do you use in this practice?
What you need to know about dental restraints for special needs children
Physical dental restraints
There is such a thing called dental restraint. Like other forms of restraint, they are controversial. Personally, my son LOVES the papoose so much I have considered getting one for our home for sensory input time. He loves, just loves, being wrapped up really tight, not unlike compression clothing for kids.
There are many different types of physical devices, including things that will hold the mouth open and so on. Learn before you go so that you and your child are not surprised during the visit.
Chemical dental restraints
It has become more common in recent years to use drugs for both children and adult patients. Simply put, these are chemical restraints … many adults hate the dentist so much, they are willing to do it. This is not an option for us on a regular basis because of the seizures and seizure meds. If you want to consider chemical restraints for your child, I would ask both your child’s neurologist, anyone who prescribes meds for your child, and your pharmacist, as well as the dentist. Medicating a child should be thoroughly researched before any decisions are made.
Finding a special needs dentist
- Ask in support groups.
- Ask your pediatrician.
- Ask your child’s current specialists which dentists they work with or recommend.
- Then call, make a consult visit … and ask!
Tips for brushing teeth with a disabled child
Here are some tips I’ve learned over the years from various dentists.
- Have your child be an active participant in choosing what dental stuff you will use. Choose things with their favorite characters, flavors they like, etc.
- If your child cannot use toothpaste due to swallowing issues, ask your dentist about getting a prescription anti-bacterial mouthwash that you can wipe on the teeth and gums afterwards.
- If your child does not like the texture of a toothbrush, consider using a thin/fine washcloth to wipe off both sides of the teeth.
- If you are having trouble finding any dental equipment to use for your child, ask your dentist what is out there to be specially ordered. There are many other options including wipes and swabs.
- If you need to use restraint at home, this is the best position that I have found. After he gets dressed each morning, Kevin voluntarily turns around sits down, and assumes this position. His head between my legs, my legs over his arms to hold them down and I can see easily into his mouth for brushing and our chlorhexadine rinse.
Lisa Lightner is a Chester County, PA mom of two. This post was adapted from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.
