About TSC


Oral/dental health is a critical part of maintaining overall health in TSC. The teeth and gums in TSC individuals are slightly different and often take a little more care to keep healthy.

As with all children, the recommendation is that the first visit to a dentist is by the age of 1 year, and no later than 6 months after the first tooth comes into the mouth. This will help your dentist discuss how to keep your/your child’s teeth as healthy as possible, and what to possibly expect in individuals with TSC.

Tooth Enamel

The tooth enamel may have pits on any surface. These enamel pits may be an easy place where decay can start.  Your dentist may swab the teeth with the common dental plaque disclosing dye and then wipe it off.

Examples of enamel pitting seen with plaque disclosing solution.

While enamel pits are estimated to occur in about 7% of the general population- they have been noted to occur in nearly 100% of the TSC population. Not all dental pits are cavities; they are just areas where enamel did not form, but can be an area where food can build up and start a cavity. 


The gums may have small areas of growth called gingival fibromas, which are mostly harmless and do not need treatment. However, they may need treatment if they become large, a source of irritation, bleeding, or an area where food can be trapped. They can be part of the gum overgrowth that is sometimes a side effect of Dilantin seizure medication.  Regular dental cleanings (prophylaxis) are a great help in controlling these.

teeth4Example of a gingival fibroma.


The mouth can be a source of bacteria and potential infection. The care to maintain the mouth is a high quality of life issue. Sodium Fluoride (NaF) in the water supply or as a supplement given to children up to the age of 12 can significantly decrease decay because it is incorporated into the developing enamel and makes it more resistant to decay.  The daily use of fluoridated toothpaste is important to reduce the cavity risk.


The awareness of the amount of sugar in the diet is a very valuable dental health issue.  In addition, the amount of time sugar remains in the mouth is critical. For example, a cough drop, breath mint, or chewing gum can provide a small amount of sugar for the bacteria in the mouth for a longer period of time and therefore produce much more decay or gum disease activity.

Soda/cola/pop is a combination of high acidity and a large amount of sugar that work together to damage teeth. Some medications for seizure control come in a syrup that is sugar-based and can quicken dental cavities. Electric toothbrushes are good, particularly in combination with dental floss when recommended.  Children and adults who have limited ability to reach all teeth need supervision and/or assistance to achieve good dental hygiene.

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. 

Where Can I Get More Information?

The following organizations are good sources of reliable information:


  • Cutando A, Gil JA, Lopez J (2000) Oral health management implications in patients with tuberous sclerosis. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 90(4):430-5
  • Flanagan N, O’Connor WJ, McCartan B, Miller S, McMenamin J, Watson R (1997). Developmental enamel defects in tuberous sclerosis: a clinical genetic marker? J Med Genet; 34(8):637-9.
  • Mlynarczyk G (1991) Enamel pitting: A common symptom of tuberous sclerosis (Oral Surg Oral Med Oral Pathol 71:63-7.
  • Sparling J, Hong C, Brahim J, Moss J, Darling T (2007). Oral findings in 58 adults with tuberous sclerosis complex. J Am Acad Dermatol; 56:786-790.
  • Updated by Elizabeth Gosnell DMD, MS and Greg Mlynarczyk DDS March 2014