Making Dental Care Easier for Children with Special Needs

Immediately after every meal or snack that 4-year-old Kaden Lee eats, his teeth and gums must be wiped clean to remove any food particles trapped by his enlarged tongue.

Kaden was born with a lymphatic malformation, the medical term for an abnormal growth of lymph vessels in his head and neck. His enlarged tongue makes it difficult to get to all the areas a toothbrush should effectively reach. Due to this condition, Kaden’s mother and his nurses use Toothette swabs in conjunction with a squirt bottle to clear out his mouth six times each day.

“We can’t get to his teeth really well because the tongue just kind of fills the whole space,” mom Kimberlee Lee said. “We realized we can’t leave food in his mouth at all, ever. He gets food stuck on the roof of his mouth because he can’t move his tongue around.”

Dental care for Kaden’s sister, Joslynn Lee, also requires a degree of finesse and patience. A rare genetic disorder caused strokes that left 7-year-old Joslynn autistic and developmentally delayed with behaviors more aligned with a 3-year-old child. She bites, squirms and resists whenever it’s time to brush her teeth.

Kimberlee says Joslynn responds better when she can watch her reflection in the mirror. And their routine involves music; Kimberlee sings a special toothbrushing song to both distract and calm her wiggly daughter. Singing also helps Joslynn make a connection to the purpose of the toothbrush.       

February is National Children’s Dental Health Month, an occasion to promote awareness of the importance of oral health to overall health. This includes the best oral care practices at home and while at the dentist office. Routine dentistry can be challenging for many children, and even more so for children like Joslynn and Kaden who face extra medical hurdles.

The various sensations that even a routine dental procedure entails – sounds, tastes, tickly tools and bright lights – can be overwhelming for a child with developmental or mental disorders. Patients with autism might need additional patience and care to mediate the sheer amount of sensory immersion they are experiencing all at once. Or a patient with muscular dystrophy might need specialized tools to keep her mouth open during the treatment. Or a patient with epilepsy might have chipped front teeth because of his seizures.

“Patients who have mental, developmental or physical disabilities have a harder time with communication or have difficulty cooperating for oral health practices at home. This all leads to a higher risk of dental problems,” according to Sheela Patel, D.D.S., a pediatric dentist at the Cook Children’s Renaissance Neighborhood Clinic.

“We often encounter families who put off seeing a dentist because they are fearful their child may not be able to cooperate. But it is very important -- especially for the special needs population -- for children to visit the dentist early on so prevention strategies can be created in order to address oral health issues before they cause pain or even infections,” she added.

Dr. Patel and Shawne Barron, D.D.S., M.S., both practice at the Cook Children’s Renaissance location, the only Cook Children’s neighborhood clinic that offers dentistry services in addition to general pediatric care. Dr. Patel estimates that out of the more than 50 patients treated in the dental clinic each day, typically 20%-30% of those patients have underlying medical conditions or special health care needs. The Lee family makes the drive from their home in Justin for dental services at Cook Children’s Renaissance Dental Clinic in Fort Worth.

The American Academy of Pediatric Dentistry (AAPD) reports that children with special needs tend to run a higher risk for tartar buildup, cavities, gum disease, overcrowding and tooth fractures. The AAPD cites various reasons to explain why these children often face a greater likelihood of oral health problems. Examples of complications include behavioral issues (attention deficit hyperactivity disorder, for instance); intellectual disabilities; and facial birth defects such as cleft lip or cleft palate.

“The more severe their health conditions, the more likely they are to have unmet dental needs,” according to the AAPD.

But the experts at Cook Children’s have some advice regarding strategies to ensure healthy oral care and treatment: Go to a pediatric dentist.  Communicate your child’s likes and dislikes to the clinic staff. Establish a daily brushing routine that fits your child’s needs and sensitivities. The guidance and encouragement can ultimately help keep every child’s smile as healthy as it can be.    

Children should make their first trip to the dentist between 6 months and 1 year of age, said Tonya Fuqua, D.D.S., director of Child Oral Health at the Center for Children’s Health, led by Cook Children’s. The first visit lays the foundation for a good relationship with the dentist and for healthy dental practices at home.

“I can’t tell you how to best help your child unless I meet them, I see them, I ask you questions and learn about your child and their special needs,” Dr. Fuqua said. “We as dentists want to help make toothbrushing the least invasive part of the day. We can give tips and tricks to help support a good dental routine at home with different gadgets, tools and ideas. There’s so much to offer, but a parent won’t know unless they take their child to the dentist and start early.”

 She calls the initial appointment the “happy visit” – a chance for the patient to meet the clinic staff, explore the surroundings, and maybe ride up and down in the exam chair. “The first visit should establish a positive experience for that child so that each time they come back they know that this is a safe and possibly fun place to go,” Dr. Fuqua said.

 To acquaint her patients with a few common dental items, Dr. Fuqua might send them home with mouth mirrors, gloves and masks, encouraging the family to play “going to the dentist.” Create a pretend scenario looking into each other’s mouths and using a flashlight to mimic the dental light on the swing arm above the dental chair. Having that play experience can help decrease anxiety when it’s time for an actual cleaning or checkup, she said.  

 Parents of children with special needs should be sure to update the dentist each time their child’s medication and health history change. The office will need to know any accommodations that might help the appointment go smoother, such as headphones or dimmed lighting. Dr. Fuqua recalled a patient with autism who requested a Taylor Swift playlist. “It made a huge difference,” she said.

Dr. Fuqua welcomes any favorite toy or blanket that helps soothe a child in the dentist chair. Parents may also hold their child’s hand and give words of reassurance during the dental procedures. “You have to find what makes them tick, what makes them engaged and smile, what makes that child happy,” she said.

 Alert the staff to any aversions, such as loud noises or a crowded room that could be upsetting. “You know your child best. Let the dentist know those things that trigger your child to get nervous or worked up, in order to help us know what to avoid.”

 Modifications and role playing at home can help a child with special needs warm up to going to the dentist and receiving dental care. For those with extreme sensitivity to taste and touch, Dr. Fuqua recommends limiting the stimulation. Start with a small toothbrush without toothpaste. Eventually, you can apply the toothpaste when the child is ready. Let the child brush a stuffed animal’s mouth. Read books and watch animated videos. All of these steps can start the process of making oral hygiene both fun and familiar.

 For children with dexterity impairments, a tool can be created by inserting a toothbrush into a tennis ball, making it easier to grasp. This modification not only teaches a level of independence, but also gives those children the confidence that they are capable of doing it on their own. 

 Dr. Patel and Dr. Fuqua understand that families juggling with stress and time constraints. possibly due to their child’s health challenges, might be tempted to make dental care a low priority. “It’s definitely one of those things that parents let slide because it’s just one more thing to deal with,” Dr. Fuqua said. The intense combination of medications and frequent doctor visits for the underlying health condition can be overwhelming. Even with these struggles. families should aim for brushing teeth at least two times a day (morning and before bed). Oral health impacts overall health, so it’s not something to ignore.

 The two dentists at Cook Children’s Renaissance Dental Clinic stay busy but are always accepting new patients. The clinic has seen an annual average of 5,434 dental patient visits since 2019. Depending on the medical issues, the safest way to perform dental procedures for some children is under anesthesia in the operating room. Annual dental surgeries at Cook Children’s averaged almost 1,100 in the past three years.

 Dr. Patel recommends finding a pediatric dentist who is comfortable with your child’s unique and individual needs, and can speak at his or her cognitive level. She attributes the resistant behaviors in some patients to a lack of understanding or an inability to express themselves. For a patient who is nonverbal like Joslynn Lee, the care must be extremely customized.

Kimberlee Lee says her daughter has a sensory processing disorder along with her autism. Joslynn’s desire for control makes brushing her teeth a battle. She won’t allow flossing or pulling a loose tooth.

During a dental appointment, Joslynn doesn’t understand why she has to sit still and can’t bite. As a result, she must be sedated for cleanings or other dental work, Kimberlee said.

At home, keeping little brother Kaden’s teeth clean involves the team of nurses who tend to his tracheotomy and restricted airway. The nurses collaborate with Kimberlee to sponge off his teeth and gums every time he eats. 

Unfortunately, a medication Kaden takes to control his lymphatic malformation makes him prone to mouth sores and tooth decay. At just 4 years old, Kaden has already needed several extractions and caps due to the damage to his enamel. Through all of this, he maintains high spirits at the dental office.  

“He loves the attention,” Kimberlee said. “So for the most part, he really is very cooperative. He’s happy to open his mouth. He’s excited about the little bag with the toothbrush and the new toothpaste and all the little things inside and to get the stickers at the end of the appointment.”

For parents with children who have similar needs, Kimberlee shared a few points that help dental visits go smoother for her family:

Plan ahead and bring whatever makes your child relax. Kaden prefers the iPad, and Joslynn likes fidget toys to keep her hands busy.

Offer a reward afterward as encouragement.  

Stay calm and positive. “Check your own energy and be able to show up and love and comfort for your child rather than feeding on their fear,” Kimberlee said. “When you’re scared, it ends up making everything worse.”

 Kimberlee advises parents to do their best to implement dental care at home, and be OK if it isn’t perfect.  The key is progress, not perfection.

“In the beginning of having special needs kids, I always felt like if they got a cavity or something was wrong, that it was my fault that I haven’t been taking good care enough of their mouth,” Kimberlee said. “I’m just going to have some grace, and if we have a problem, we have Dr. Patel to help us through it.”