Most children do not like having their eyes examined, or medication instilled. Interestingly, children who are born with blocked tear ducts and therefore have sticky watery eyes, seem to be much more amenable to examination and treatment. This may be due to the fact that since birth, they have become accustomed to regular cleaning, examination and drop treatment. Parents incorporate eye care into the daily routine, and babies soon learn that it is normal and non-threatening. Sometimes they even seem to enjoy the process. Examination of these babies in the clinic is relatively easy.

Although not scientifically proven, it may be that if the child’s first encounter with eye care is when they have a painful problem causing anxiety in both child and parent, they may be fearful of further care in the future. Clearly not all children are the same, and some are more sensitive than others. But, a routine of gentle eye care from early infancy may help reduce problems when blistering does occur.

A school of thought feels that children with severe types of EB, especially dystrophic, should be prescribed routine lubricants from an early age. Gentle cleansing of the eyelids using boiled cooled water or saline solution becomes part of the daily routine.

Children should be discouraged from rubbing their eyes. Unfortunately, the dressings that the children may have on their hands, becomes an ideal tool for rubbing the eye!

If this is a problem especially with babies, soft cotton mitts can be put loosely over the dressings reducing the direct friction of the dressings on the eyelids.

If blistering occurs, do not attempt to prise open the eyelids to examine or instill lubricants. If the child is able to open the affected eye itself, a lubricant ointment or gel can be instilled, and painkillers can be given. If they are unable to open the eye, lie the child down flat, with their eyes closed and apply a generous amount of ointment or gel to the closed lids along the lashes and lid margins. Over a few minutes this will melt and seep into the eye. A gauze pad moistened with boiled cooled water or saline and laid over the closed eyes may help to make the eye more comfortable. An eyepad can be applied but it is not a necessity. The child should be encouraged to rest and not move the eyes as much as possible. If the blistering is minor, watching television is ideal, although computer games are not recommended since the concentration required usually reduces blinking time and it would therefore be better if the eye was padded.

If the affected eye is not more comfortable within 24 hours or has got worse, expert advice should be sought from an ophthalmologist.

Sunglasses are now available for all children and even the smallest babies. They are very helpful if a child has photophobia following a blister in the eye, or when playing outside with other children. Inexpensive, supple, brightly coloured, trendy sunglasses made by Tommy Tippee especially for babies and children are widely available in chemists.

Care should be taken that they are the right size, and that they do not cause rubbing behind the ears or on the bridge of the nose.

Children should have the usual routine eye tests throughout infancy and childhood, and squints and any other disorders such as lid problems should be referred to an ophthalmologist specialising in care of EB patients.

If a child needs to wear corrective glasses, parents should ensure that a qualified ophthalmic optician fits them correctly. Some sports companies now make frames that are supple and light and these seem to help reduce the rubbing and potential blistering behind the ears and bridge of the nose. Wire ear pieces are not recommended, so if the child is having difficulty keeping the glasses on, special bands made from a neoprene type material can be obtained from most sports/surf shops and some larger opticians. These brightly coloured bands cover the earpieces of the frames and are secured at the back of the head with a bead or tie.