What is Early Onset Nystagmus?
This type of nystagmus occurs early in childhood, usually from birth. Nystagmus is an involuntary, uncontrollable movement of the eyes, usually from side to side, however sometimes the eyes can move up and down, or in a circular motion. This movement can vary in speed, depending on the direction the eyes are looking. Children are not aware that their eyes are moving.
What causes Early Onset Nystagmus?
Nystagmus in childhood may be inherited or be associated with another eye disorder e.g. albinism (a condition where the eyes or sometimes the whole body have no pigment/colour). Many children with nystagmus have no other eye or health problems.
Can Nystagmus be cured?
At present there is no known cure, however, it is unlikely to get worse with age and may become less noticeable.
How common is the condition?
Nystagmus is believed to affect around one in 1,000 people.
How does nystagmus affect people?
- In most cases with early onset nystagmus, the brain adapts so whatever the person is looking at appears steady despite the eyes moving, however the object may not look clear.
- Nystagmus can reduce eyesight to below average and, in some cases a child may be registered partially sighted. Generally near vision, for example reading, is better than distance vision.
- Many people with nystagmus can read very small print if it is held closer. However, books and schoolwork with enlarged print can be used to make reading easier. In some cases the use of a magnifying glass may help.
- Children may read more slowly and tire more easily because of the nystagmus, but this should not be taken as a sign of poor reading ability.
- In some cases nystagmus is helped by using a different head position e.g. turning the head to one side or lifting the head up or down to steady the nystagmus. Children do this instinctively if it helps to improve their vision.
- Most children with nystagmus attend mainstream schools.
Who will we see at the hospital?
At the hospital you may see several specialists:
- Orthoptist will assess the squint and check the vision in each eye.
- Optician (optometrist) will test the eyes to see if glasses are needed.
- Ophthalmologist will look into the eyes to check they are healthy and will carry out any surgery on the eye.
How can the potential for vision be maximised?
- If a child is also long or short sighted then glasses should be worn to correct this.
- Don’t discourage your child’s tendency to get closer to objects.
- Don’t discourage the use of a different head position.
- Inform teachers of your child’s condition and use larger print books and magnifiers, if helpful.
- Advise teachers where a child should to be sat in the classroom to best see the blackboard.
- Advise teachers to allow your child to have regular breaks/ rests when reading as they may tire more easily. Nystagmus can be worse if a child is stressed, tired, anxious or unwell.
- Your ophthalmologist can provide a supporting letter to your child’s teacher if required.
A small number of children may benefit from prisms or surgery to help reduce an obvious head turn, but this does not stop the nystagmus.
Your orthoptist or ophthalmologist will advise as to which, if any, treatment is best suited to your child.
Further Nystagmus Information
Support and information is available from the Nystagmus Network.
This service includes a telephone help line, meetings, talks, booklets and information leaflets.
Contact: www.nystagmusnet.org.uk
Tel: 0845 6342630 or 0292 0454242
For further information
Contact details
Appointments Office:
To change or cancel an appointment, call: 0191 282 4444 (option 3).
Monday to Friday 9am to 5pm (excluding Bank Holidays)
Children’s Eye Department:
To speak to an orthoptist about your treatment 0191 282 4434
Monday to Friday 9am to 5pm (excluding Bank Holidays)
The Patient Advice and Liaison Service (PALS)
PALS can offer on-the-spot advice and information about the NHS. You can contact them on freephone 0800 032 02 02 or e-mail northoftynepals@nhct.nhs.uk
Useful websites
If you would like further information about health conditions and treatment options, you may wish to have a look at the NHS Choices website at www.nhs.uk
