The teeth and gum tissue of TSC individuals are slightly different and require a little more care to keep healthy. The tooth enamel will have random pits that occur on any surface and can be the spot where decay can start. The distribution of these enamel pits is easily detectable if your dentist swabs the teeth with the common dental plaque disclosing dye and then wipes it off.
Example of enamel pitting.
Most dentists are familiar with seeing pits with enamel as it occurs with about a 7% frequency in the general population but occurs in 100% of the TSC population. Not all dental pits are cavities; they are just areas where enamel did not form, but they can be the spot where food debris accumulate and become a cavity.
The gum tissue often will have small areas of growth called gingival fibromas, and they are benign and do not need treatment unless they become large and a source of irritation or bleeding. Once again, they occur in the general population but more so with TSC and can be part of the gum overgrowth that is sometimes a side effect of Dilantin seizure medication. Regular dental cleanings (prophylaxis) is a great help in controlling these.
The mouth is a source of great pleasure with eating different foods, kissing loved ones, smiling and speaking. It is also the source of a great deal of bacteria and potential infection. The care to maintain the mouth is a high quality of life issue, and there are the same guidelines that apply to everyone. Sodium Fluoride (NaFl) in the water supply at 1ppm or as a supplement given to children up to the age of 12 will significantly decrease decay because it is incorporated into the developing enamel and makes it very resistant to decay. Regular dental cleanings and x-ray check-ups to catch decay early usually on a 6-month interval are important. Children’s dentists (pedodontists) are generally skilled 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. A call to the local dental society can help find those dentists who can provide this care.
Sealants, fluoride treatments, remineralizing toothpastes, varnishes for sensitive roots, fast acting sedatives, digital x-rays, ultrasonic cleaners, lasers and inraoral cameras are some of the new technologies available in most offices to help provide care. The American Dental Society website (www.ada.org) and your state dental society (e.g., www.cda.org) are a good source of reliable information.
The awareness of the amount of sugar in the diet is a very valuable dental health issue. The quantity of sugars, both natural and refined is important as is the amount of time it remains in the mouth. 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. Bacteria love a constant food source and thrive on the simple sugars.
Also, soda is a perfect combination of high acidity and the big amount of sugar that work together to damage teeth. The American diet is high in sugar and soft drinks are a major part of that. Even some of the medications for seizure control come in syrup that is sugar based and unknowingly we add to the decay rate. The new electric tooth brushes are excellent and in combination with dental floss that comes pre-strung on a holder, really good dental hygiene can be achieved.
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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 JD, Hong CH, Brahim JS, Moss J, Darling TN (2007) Oral findings in 58 adults with tuberous sclerosis complex. J Am Acad Dermatol 56(5):786-90
** Tuberous Sclerosis Alliance Information Sheets are intended to provide basic information about TSC. They are not intended to, nor do they, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment without first consulting a physician. The TS Alliance does not promote or recommend any treatment, therapy, institution or health care plan.
Updated by Greg Mlynarczyk, DDS, August 2011.