Early diagnosis

Attending your first eye clinic appointment with your child can be daunting. The clinics are often very busy and several different people may complete a variety of tests with your child.

• Depending on how old your child is, a specialist nurse may initially measure their ability to see detail by asking them to read down a letter chart.
• You may see an orthoptist who’ll diagnose and treat eye movement disorders, as well as visual impairments related to the way the eyes interact with the brain.
• An optometrist may complete eye tests and examinations of your child’s eyes to check for diseases or disorders of the eye.
• It is very likely that you will see an ophthalmologist, who often specialise in specific eye conditions, as the first visit will be relating to diagnosis of the vision impairment.

You’ll be asked many questions about your child’s vision. You too may have questions you want to ask – it’s a good idea to make a note of your questions before you go to the clinic, so that you don’t forget anything vital. And if you don’t fully understand the answers they give, ask them to repeat themselves.

Some suggestions of questions you may want to ask:

• What is the cause of the eye condition? 
• Is the condition inherited?
• Will special treatment be required – is the condition treatable?
• How much can my child see? (However, bear in mind it can be difficult for the ophthalmologist to assess how much your child can see in the very early years.)
• What can I do to help my child?
• Are there any special techniques I should learn to stimulate my child’s visual abilities?

Once the ophthalmologist has all the information, they’ll be able to diagnose your child’s eye condition. Have a pen and paper with you, so you can take notes. It’s very easy to forget the details when there’s a lot of new information to take in. You can also ask for written information to take home with you. 

Meet the eye clinic team

• Ophthalmologist - they are a specialist eye doctor, who diagnoses eye conditions and provides the treatment.
• Orthoptist - they carry out vision assessments, usually after diagnosis of your child’s eye condition.
• Optometrist - they carry out sight tests, looking for any abnormalities within the eyes and detect any vision defects.
• Eye Clinic Liaison Officer (ECLO) or Family Support - they provide you with support from diagnosis onwards and direct or refer you to relevant services.

Find out more about the professionals working with your child here.

Tests that may be carried out at the clinic to find out the final diagnosis 

Your child may have had to undergo various tests and that can mean waiting longer for the diagnosis.

These could be electrodiagnostic tests (which aren’t invasive and measure the amount of electrical activity in certain areas of the body) such as:

• A visual evoked potential (VEP) test, which tests the time it takes for the brain to respond to signals sent by the eyes. This involves attaching some small discs to your child's scalp to record the electrical responses from the brain whilst your child is shown flashing lights or a black and white checkerboard pattern on the screen.
• An electroretinography (ERG) test, which tests the light detection portion of the eye by using sensors taped to the eye area while flashing lights are shown to your child, both in the light and in darkness. The results of the test give the ophthalmologist a detailed idea of exactly what your child can and can’t see.

A blood test might also be done to determine whether your child has a specific gene related to an underlying condition that might be affecting your child’s vision.

It’s natural to be concerned when your baby doesn’t make eye contact with you. However, it can take a few weeks for a new-born baby’s vision to develop and for your baby to make direct eye contact with you when you’re talking or playing with them.

The lack of eye contact doesn’t automatically mean that there’s a vision problem but if you’re concerned, contact your doctor and ask them to check your baby’s vision. If you’re still concerned, ask your doctor for a referral to an ophthalmologist.

It’s natural to have concerns about your child’s future and to want to make sure all possible support is in place. You may be worried about even knowing what support and services are available. Or you know what support your child needs but you’re finding it difficult to find a way to have it put in place.

Our specialist team can talk through your concerns and tell you about the support you need to be aware of. 

Once your child has been diagnosed, it’s natural you’ll want to know more about their specific eye condition. There are some really useful support groups for specific eye conditions and they often hold family days, where you can meet families with children who have the same condition.

• Albinism
• Alström Syndrome
• Aniridia
• Bardet-Biedl Syndrome
• CVI
• Keratoconus
• Macular Dystrophies
• Marfan Syndrome
• Microphthalmia, Anophthalmia, Coloboma
• Nystagmus
• Retinal Dystrophies
• Retinoblastoma
• Stargardt's disease
• Stickler Syndrome
• Usher Syndrome

Other useful sources of information

• NHS Scotland Visual Impairment Network for Children and Young People has information on a very wide range of eye conditions.
• Great Ormond Street Hospital has a downloadable booklet listing resources that you may find useful.
• Contact provides support for families with children who have a disability.
• RNIB provides information, products and services for children and young people with vision impairments, you might find their information for parents useful.

• Yes, you'll probably feel isolated, especially in the early days following your child’s diagnosis. You probably won't know other parents who have a child with the same, or a similar vision impairment. It can help to meet and talk with other parents and share experiences and tips.
• Your child may also benefit from meeting other children with a vision impairment and realising they’re not the only one with these difficulties. Older children who have a vision impairment and are thriving are great role models. Talking to them may give your child the encouragement they need and the courage to attempt different activities.
• One way of meeting other families and starting to build a network of support is at our family events. 

Toys that have reflective surfaces, lights, bright colours and a noise such as a bell or rattle, all help your child to find and enjoy playing with their toy. Have a look at what’s available in specialist toy catalogues first but be aware that they can be expensive, you may want to find similar alternatives. You need to be mindful of safety, so make sure the toy is safe for your child to play with.

Here are some examples of specialist toy catalogues:

• Spacekraft
• Rompa
• Wonderbaby
• TFH Special Needs Toys
• Learning Materials Ltd
• RNIB

We’re here to help if you’d like more advice on appropriate toys for your child.

There’s no right or wrong time or way of telling people about your child’s diagnosis. First though, you need time to absorb the news yourself, so that you can gain a little resilience before discussing the situation with family members and friends.

Often, once parents have spoken openly and honestly with people, they discover that those people were already aware of the child’s vision difficulties but had accepted them without comment.

Of course, there are occasions when the diagnosis of vision impairment comes completely out of the blue. In that situation, you should only start conversations with your family and friends when you feel ready to do so.

Speaking about your child’s diagnosis can help everyone involved, including you and your child. However, try not to talk constantly about the diagnosis with your child, particularly if they’re old enough to understand. Try to keep it normal and not something they need to worry about.

Relationships often become strained during times of stress and uncertainty and the diagnosis of your child's vision impairment may be one of those times.

Not everyone feels the same emotion at the same time and individuals can be in a different place emotionally at different times. Some parents can be quite pragmatic and accepting of the diagnosis, others may be extremely emotional and upset, and some may feel a sense of guilt and bewilderment.

Talking to each other to discuss the diagnosis and your feelings about the situation can help you both to understand each other’s position. It will help you to support each other and to move forward emotionally, giving you both the resilience to negotiate the way ahead for your family.

If your child has been diagnosed with a specific eye condition and only has vision in one eye, this is known as monocular vision. It affects their 3D vision and depth perception, and can cause difficulties as they get older in moving safely around steps, stairs, kerbs and different floor or surface levels. It’s not uncommon to have significant sight loss in one eye and normal vision in the other eye.

Some children with severe vision impairment may experience difficulties with sleeping. That’s because the body’s natural, internal process that regulates the sleep-wake cycle (known as circadian rhythm) is affected by light and darkness. If your child has little or no light perception, they’re likely to experience difficulties with the sleep-wake rhythm and will have disturbed sleep patterns. One option is to speak to your doctor, who may be able to help make your child’s sleep-wake rhythm more manageable.