By Melanie (Logan) England
(this information was previously posted on the EBmommas website)

The Dystrophic and Junctional forms of Epidermolysis Bullosa are notorious for causing deformities in the enamel and dentin of the teeth, but people with all types of EB are prone to dental decay due to oral hygiene complications. Blistering in the oral cavity, fused oral vestibules and smaller than normal mouth opening can all make it difficult, if not impossible to brush and floss properly.

According to pediatric dentists at http://krspd.com,here are steps parents and patients can take to keep the teeth as healthy as possible. For your convenience they have an office in Madison.

Start a regular routine of brushing your childs teeth as soon as the first teeth appear. If the mouth is too sensitive and blistered for regular brushing, a Toothette sponge can be used (ask your pharmacy for these), or the teeth can be wiped clean with a gauze sponge wrapped around your finger.

See a pediatric dentist who specializes in disabled children as soon as the first few teeth appear.

Check with your local water board to find out if your drinking water if fluoridated, and ask what the concentration levels are. This will help your dentist decide if your child needs a fluoride supplement, and what dosage is appropriate.

Soften the bristle of the toothbrush but running them under hot tap water before brushing. Oral-B extra soft childrens toothbrush ages 1-3 years is one of the best on the market, and the smallest for reaching back teeth in children with small mouth openings.

Use a fluoride toothpaste for sensitive teeth such as Sensodyne or Colgate Sensitive. Plain baking soda can be used if a toothpaste cannot be found that does not irritate the mouth.

Chewing sugar free gum for 15 minutes after each meal helps loosen plaque and food debris from the teeth.

When your childs mouth is severely blistered or ulcerated brushing may be impossible without great pain. During this period the mouth can be rinsed with a solution of 1tbs hydrogen peroxide mixed with 4tbs water and < teaspoon of salt. This will soothe the mouth and loosen debris. If you choose a commercial mouth rinse, read label and make sure it does not contain alcohol.

What your dentist can do:

Prescribe Decadron elixir- a liquid steroid that is swished around the mouth for 2-3 minutes then spit out. For a child too young to follow instructions, it can be swabbed inside the mouth with a toothette or gauze sponge.

For extreme pain your dentist can prescribe 0.05% topical lidocaine gel to apply to gums and inside of mouth 3 times a day.

Magic Mouthwash is a pain reliever that combines lidocaine, benadryl and Maalox, and many EB patients report good success with it. Your pharmacist will mix it in the proper combination per your doctors prescription.

Candidiasis, commonly known as thrush, is another commonly found oral problem in people with EB. Anemia and use of antibiotics can cause thrush, which looks like a white coating on the tongue, palate, or inside of the cheeks. It can also make the surrounding tissues puffy and tender. Your doctor may prescribe a Nystatin solution to rinse and swallow, or liquid Diflucan to be take orally for 7-10 days.

Oral Surgery

Despite diligent care EB teeth may still develop carries and require fillings, crowns, or sealants. Talk with your dentist about which option is best for you or your child. Simplex patients who still have good enamel can often opt for fillings, but patients with enamel hypoplasia will require crowns because the fillings have nothing to bond to.

Its usually far less traumatic for children to be sedated rather than awake for dental procedures, and much safe for EB children to have it done as same day surgery rather than in the doctors office. Discuss all your options with the doctor and decide which is safest and most comfortable for you or your child.

Have the doctor go over the steps that will be taken to minimize trauma to your childs skin during the procedure. Make sure they include the following:
Orient all staff involved in the procedure on basic EB care
Have an assistant to manually retract gums and tongue instead of using metal retractors.
Coat all instruments with Vaseline or Aquaphor, as well as the gas mask the anesthesiologist will use.
Pop blisters as the form during the procedure so they dont grow and cause the patient even more pain.
Avoid if possible allowing suction to touch the oral membranes so less blistering occurs.

To find a dentist in your area contact your local chapter of the American Academy of Dentistry.

Links:
American academy of Pediatric Dentistry