Potty (toilet) training children with epidermolysis bullosa (EB)

Most children are ready to start potty training between the ages of 18 to 36 months, however every child is different. It’s not unusual for a child with EB to be at the older end of this spectrum or for potty training to be unsuccessful on the first try.

The NHS has useful advice on how to tell if your child is ready to be potty trained.

Try potty training when there are no big disruptions or changes to your child's routine. It's important to stay consistent, so your child knows what to expect and doesn’t get confused. Many families find that the summer holidays are a good time to start potty training as they’re spending more time at home.

You can:

• Use a padded seat or potty to reduce damage to your child’s skin.
• Use dressings such as Mepilex Transfer or Spycra Protect around the toilet seat or potty to pad it out.
• Apply a barrier cream such as Proshield around the nappy area, bottom and thighs to protect the skin.

• Encourage your child to go nappy free during the day. This can make the process simpler as there’s nothing to take off if they need to wee or poo urgently.
• You can use Skinnies crotchless shorts if your child has lots of dressings around their bottom area and you’re worried they’ll fall off without a nappy. These are available on prescription. Speak to your child’s EB nurse for further advice.

• If your child often finds it difficult to poo, please contact the EB team before you start potty training. They’ll be able to offer advice and support, and it may be worth waiting until pooing isn’t as difficult.
• Try and increase fibre and movement and make sure your child is drinking enough water. Speak with the EB dietician if you’d like advice or support with this.
• Make sure your child is having their routine laxatives as prescribed.
• Sit your child on the potty straight after they've had food or milk as this may help them poo.
• Have a break from potty training for a week or two if your child is finding not being able to poo stressful or upsetting. You can start again once they are able to poo more easily.

• Be realistic with how long potty training may take- your EB team can offer advice as needed.
• Have a potty in the bathroom for your toddler to see and get used to before you start.
• Involve your child as much as possible. Show them how to use the toilet and encourage them to wipe themself with your support.
• Speak with your child’s occupational therapist if EB affects their mobility and posture. They may be able to provide suitable equipment to help.
• If your child goes to nursery or pre-school, ask for potty training to be added to their individual healthcare plan.

• NHS UK- ‘How to potty train’
• Bladder & Bowel UK- ‘Trouble shooting potty or toilet training’
• Contact (for families with disabled children)- ‘Potty and toilet training’

MyGOSH (for non-urgent queries)

Telephone: 0207 405 9200 Ext 5053

Email: gos-tr.ebnurses@nhs.net