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Oral involvement in TSC can include gum fibromas and dental pits. The fibromas appear as overgrowth of the gums and can be quite extensive, although this finding is not common in individuals with TSC. Dental pits occur in about 7% of the general population and in about 90% of those with TSC.

The pits are seen on both the front and back surfaces of the teeth, which are areas that do not normally develop cavities. The dental pits can be revealed using a dental plaque-disclosing stain. Examination of the teeth is noninvasive and can usually be performed by a dental hygienist or other healthcare provider. Meticulous dental hygiene, including regular brushing and flossing, is an important aspect in preventative care for individuals with TSC

As with the eyes, teeth manifestations are another area that has not received much longitudinal surveillance from a research standpoint. We do know enamel pits remain an issue throughout the lifespan, so having your dentist preventively utilize sealants to minimize tooth decay is appropriate every 6 months. It is important to know oral fibromas can occur near the teeth or within the bony jaw, and these should be treated with surgical excision or curettage when present.

Meticulous dental hygiene, including regular brushing and flossing, is an important aspect in preventative care for individuals with TSC.

Visiting your dentist

Regular dental cleanings and x-ray check-ups to catch decay early, usually on a 6-month interval, are important. Your dentist may recommend recalls more frequent than 6 months based on you/your child’s risk for cavities. Children’s dentists (pediatric dentists) are trained in providing care to children and adults who may need sedation or extra behavioral care. Hospital dentistry is also an option if a patient cannot tolerate the regular office setting.

Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.

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