Finding a Rett-aware dentist

If you are a caregiver for a child with Rett syndrome, finding the right dental care for them can be challenging due to the nature of the condition. Ideally, you would want to connect with a special needs dentist who specializes in adult or pediatric dentistry for Rett syndrome.

Knowing where to look for an expert who specializes in Rett syndrome dental care and what to pay attention to during your search can help you manage your child’s dental needs.

What to look for in a Rett-aware dental practice

A key aspect of dental care for people living with Rett syndrome is finding a provider who has treated others with complex neurological conditions and is aware of Rett and its symptoms.

When searching for a dentist, some must-haves that can greatly benefit your child’s care include:

• a wheelchair accessible dentist’s office with an accessible entrance and bathrooms
• experience treating patients with complex neurological and developmental conditions
• awareness of common oral issues in Rett syndrome
• a sensory-friendly dental office that is quiet and has dimmable lighting
• staff trained in nonverbal dental communication, such as through gestures and facial expressions, and with experience working closely with caregivers
• expertise in special needs sedation dentistry
• willingness to coordinate with your child’s neurologist and pediatrist

Some “nice-to-have” features include:

• availability of a quiet room for breaks
• flexible scheduling, including longer appointment times
• knowledge of dental desensitization techniques to help manage anxiety
• experience with general and dental anesthesia for Rett syndrome
• staff trained to assist with positioning

Finding an office that has these features can help you support your child’s dental health in a way that is inclusive of their needs.

Managing Rett-specific oral health challenges

Rett can involve certain oral health issues that can be managed through professional intervention and at-home strategies.

A common challenge is Rett syndrome teeth grinding, also known as bruxism in Rett syndrome, which can lead to enamel wear, tooth sensitivity, and jaw discomfort. A dentist may recommend protective night guards, monitoring strategies, or restorative treatments to manage the issue.

Gum inflammation (gingivitis) is another common problem in Rett syndrome, and may stem from difficulty in brushing, swallowing, or fully clearing the mouth of food. As such, regular cleanings are important for preventing and managing gum disease.

Your child’s dentist may also recommend other strategies to help maintain oral hygiene for rare diseases. An example would be using adaptive toothbrushes to make brushing easier and more effective.

Some people with Rett may drool often, breathe through their mouth, push their tongue forward, or frequently suck or chew on their hands or other objects. Over time, these habits can affect how the teeth and jaw develop and may raise the risk of cavities or sore gums.

A dentist can monitor these changes, offer ways to protect the teeth, and refer to other specialists if needed.

Pre-visit prep

Some Rett symptoms, such as involuntary movements and breathing issues, can make dental visits more challenging. However, there are ways to prepare for and potentially improve the experience for you and your loved one.

Step 1: Research

Try to find a dentist who specializes in Rett syndrome oral health or someone who has treated people with neurodevelopmental conditions.

Step 2: The pre-visit call

Call the office and explain your child’s diagnosis and symptoms. Ask any questions you may have and share strategies that may help calm your loved one during the treatment visit.

Step 3: The meet-and-greet

If possible, schedule a pre-treatment visit to give your child an opportunity to see the office, meet the staff, and familiarize themselves with the environment.

Step 4: The appointment

Bring any items that can help your child feel more comfortable, whether it’s their favorite stuffed animal or blanket.

In the chair: Comfort strategies and sedation options

A dental visit can be stressful for both you and your loved one, but there are ways to make it a bit more comfortable. The dentist may choose to use a weighted blanket, strategic positioning, and slow pacing during procedures to help manage any potential anxiety your child may experience.

Depending on the type of procedure your loved one needs and their symptoms, such as involuntary movements, the dentist may opt for special-needs sedation, from mild to deep, or general anesthesia. Because Rett syndrome can involve breathing issues, the dentist may need to coordinate with your child’s care team when planning for anesthesia.

Resource checklist: Where to start your search

Finding a dentist may take some time, and it can be helpful to know where to begin your search.

Consider these tips:

• Visit the website of the Special Care Dentistry Association (SCDA).
• Ask your neurologist for recommendations. Seek suggestions from other parents, such as those who are members of the Rett Syndrome News Facebook group.
• Contact Rett syndrome advocacy organizations, such as the Rett Syndrome Research Trust or the International Rett Syndrome Foundation.

While identifying the right special needs dentist may require some research, finding someone knowledgeable and compassionate can make a difference in your child’s well-being. Consulting resources and knowing what to look for can help you connect with an expert who understands your loved one’s needs.