7th April 2014
Early in 2014 Karen, the mother of a child with nystagmus, prompted me to Google “health visitors”, something I’d done before but with little joy. I was really delighted to discover that since I last searched the Institute of Health Visiting had come into existence. As a result I’ve written the following article.
Health Visitors play a vital role in identifying the eye condition nystagmus – also commonly dubbed “wobbly eyes” in children. Nystagmus tends to manifest from six to eight weeks of age and often where there’s no known family history. Most parents therefore leave hospital with an apparently healthy baby and are not looking for an eye problem. First time parents in particular may not recognise nystagmus when it starts and some who do go into denial. So, a health visitor may be the first professional to spot nystagmus in an infant.
Nystagmus, as many of you know, is an involuntary movement of the eyes. The movement is usually conjugate and can be horizontal (most common), vertical or torsional – or even a combination. Nystagmus affects around one in a thousand people and – so specialist teachers tell us — is the most common form of serious visual impairment among school-age children.
Nystagmus is associated with many other eye conditions and syndromes, including childhood cataracts, aniridia, coloboma, optic nerve damage, achromatopsia, albinism and Down’s Syndrome. Nystagmus can also appear with no (as yet) known cause or association. In a small number of cases, nystagmus may be due to a brain tumour; the prognosis is often good, especially if caught early.
Although in terms of treating nystagmus, the medical options are limited, it is entirely wrong to say “there’s nothing we can do”. There’s a lot we can do to help families affected by nystagmus in terms of information, especially for schools, and through peer group support. To demonstrate that point, here’s something Karen (the mother I mentioned earlier) said in an email:
“We joined your network a couple of months ago and my partner and I are extremely pleased to have done so. I just wanted to say thank you so much for your recent emails. Your knowledge and experience of Nystagmus is so reassuring.”
The Nystagmus Network (NN) website www.nystagmusnet.org and publications have lots of information, especially about the effects of nystagmus. Nystagmus varies from person to person, but among the common effects are: poor distance vision, changing vision throughout the day, slow visual response time (we need more time to see), reduced field of vision, poor depth perception, balance and hand-eye coordination, possible light sensitivity and difficulty making sense of new, busy, cluttered or crowded environments. One crucial point to understand is that nystagmus cannot be measured by visual acuity tests (how far you can read down the optician’s eye chart) alone.
Finally, having weird, wobbly eyes — together in many cases with a head posture or head nodding – brings social consequences which are often under-estimated. Once again, it is peer group support – rather than any medical intervention – that can reduce parental anxiety in the short term and make all the difference to an individual’s self confidence in the long term.
John Sanders, information and development manager, Nystagmus Network