Epidermolysis bullosa (EB)- how to keep your child’s mouth and teeth healthy

A healthy mouth and teeth are an important part of our overall wellbeing. Keeping the mouth and teeth clean and comfortable helps reduce preventable dental problems and the need for invasive treatment. It also helps your child to meet their nutritional needs.

EB can affect the mouth in several ways and brushing the teeth can be difficult because:

• Blisters in the mouth may be sore.
• There may be a gradual increase in scarring within the mouth.
• How far the mouth can open and how mobile the tongue is, can gradually reduce over time.
• Regular toothpaste and mouthwash may be too ‘spicy’.

Soreness in the mouth can also mean your child needs to eat more slowly or with increased frequency.

All of the above can increase the risk of tooth decay.

Some types of EB can affect the development of tooth enamel (the protective outer covering of the teeth).

Enamel hypoplasia is a condition in which the tooth enamel is underdeveloped or missing and is very common in people with junctional EB. It can lead to the teeth looking brown and patchy or pitted and can cause plaque and tartar build up which can lead to gum inflammation. It can also cause an increase in sensitivity to hot and cold food and drinks.

Enamel hypo mineralisation is a condition which affects the quality of the tooth enamel and can cause it to become softer and sometimes chip away. Children with enamel hypo mineralisation have an increased risk of tooth decay, and may also experience an increase in sensitivity to hot and cold food and drinks.

Please speak with your EB dentist or hygienist if your child is experiencing sensitivity, so they can give you advice on what may help.

You should start brushing your baby’s teeth as soon as they appear- this is usually at about 6 months old. We recommend that you help your child brush their teeth until they are at least 7 years old or until they can brush their teeth effectively by themself.

• Brush the teeth twice a day for about two minutes. Brush first thing in the morning and last thing at night.
• Always use a fluoride toothpaste- look for ‘1450 ppm’ on the tube.
• Use a smear of toothpaste for babies up to three years old, and a pea sized amount for children aged three to six years old.
• Don’t rinse after brushing- this allows the fluoride in the toothpaste to work for longer.
• From eight years old use a daily alcohol-free fluoride mouthwash after lunch if possible. This should be used at a different time to toothbrushing.
• From 10 years old your dentist or GP can prescribe a stronger fluoride toothpaste: 2800ppm.

• Soften bristles under warm water before brushing.
• Try using a small, soft bristle toothbrush eg. Curaprox baby, finger guard brushes, Collis curve, Curaprox surgical, Nano toothbrush, TePe Kids and TePe compact tuft toothbrush.
• Use a mild flavoured toothpaste if regular toothpaste stings e.g. Oranurse flavourless or Biotene toothpaste.
• Disclosing tablets are chewable tablets that turn dental plaque a bright colour. They’re a great way to reveal plaque and improve toothbrushing.
• If your child finds it difficult holding or moving a toothbrush, speak to their dentist/hygienist or occupational therapist for advice.
• If your child suffers from mucositis (sore and inflamed mouth), please speak with the EB or dental team who can advise on suitable mouthwashes, sprays or gels to help ease the symptoms.

Your child will have regular visits with the EB dentist, but we also recommend that they’re registered with their local dentist at around three to six months old, so they can have routine check ups. Your EB dentist and hygienist can give you further advice on this.

We recommend that your child visits the EB dentist and hygienist every three to six months. The dentist will check and clean the teeth and provide advice on how to keep the teeth healthy. They may also apply a fluoride varnish or sealant to the teeth to reduce the chance of tooth decay.

Babies naturally enjoy sweet foods more than savoury foods, but too much sugar can lead to tooth decay.

Try to wean your baby onto a variety of savoury foods, to help them develop a liking for foods which are less sweet. Vegetables, protein sources such as fish, meat, nuts, beans, pulses and natural plain yoghurt are all good ways to start. Your baby may not like savoury foods straight away but keep trying- some foods need to be tasted up to 15 times before they’re accepted.

Encourage your child to drink water or cow’s milk (if your child can drink cow’s milk). Your baby can be offered sips of water from around 6 months and cow’s milk from 12 months old. Avoid giving juice, fizzy drinks, squash, smoothies, and non-prescribed milkshakes. Even no-added sugar juices contain natural sugar that can cause tooth decay. Some non-dairy milks are also sweetened with apple juice or sugar.

Try to work towards changing from a baby’s bottle to a cup at around one year of age.

Try to work towards reducing and stopping overnight milk feeds as soon as your baby is capable, your EB dietitian can help you with this if needed.

Water is the best drink.

Drink water or whole milk during the day. Water also helps to rinse the mouth and clean the teeth after eating. You can use alcohol free vanilla extract, cinnamon or pure cocoa powder to flavour milk if advised by your dietitian.

Avoid sugary, sticky foods such as sweets and lollipops where possible. Too many of these can lead to tooth decay.

If your child needs a high calorie diet, try to use savoury foods rather than sweet. Oils, cheese, natural yoghurt, milk, cream, margarine, eggs and avocado are all high in calories. Try to choose full fat but no-added sugar versions where possible.

Your child’s dietician may have advised that your child has nutritional supplement drinks.

Milkshake supplements can be a great way for your child to easily consume more nutrients, calories and protein but they can also be high in sugars.

To protect your child’s teeth, we recommend that where possible you:

• Pick a neutral/ unflavoured/ savoury flavour.
• Avoid giving milkshake supplements in your baby’s bottle.
• Ideally add them to meals- you can use them in porridge or cereal instead of milk.
• Encourage your child to drink milkshake supplements through a straw if possible.
• Drink milkshake supplements in one session rather than sipping them over a long time.
• Sip water, rinse the mouth or brush the teeth after having a supplement drink.

If you have any questions, please do get in touch:

• Message us on MYGOSH
• Call us on 0207 405 9200 ext 0078
• Email us on dietetics@gosh.nhs.uk