Mar 182012

Professor Irene Gottlob’s team at Leicester University hospital are one of the leading research centres for nystagmus in the UK.  So when the Nystagmus Network recently publicised information about a new hand held OCT (Ocular Coherence Tomography) scanner they’ve helped purchase for Leicester and advertised for volunteers to take part in trials there I got in touch straight away.   We are very keen to help out in any research that can help make a difference for the future. 

I was advised to seek a referral from Jack’s doctor so an appointment could be set up, which came through within less than two weeks for last week.  Whilst there was one appointment time of 1pm, we were told to expect several tests and sessions with different Doctors throughout the afternoon.

Although it was my first trip to Leicester, finding the hospital and parking were relatively straightforward (thanks to the sat nav and my Mum’s navigation skills :-)), and we were very impressed with the large waiting area in the Ophthalmology department with lots of toys and activities to help keep children entertained.

The first appointment was primarily to take details, family history, and Jack’s symptoms.  Jack was asked to look at flashcards with dots on, and a flashlight was used to check how reactive his pupils were to the light.

The next appointment was to evaluate Jack’s eyes prior to dilating them, and they said they could see a slight squint.  They also checked my eyes.

Appointment three was taking a video of Jack’s eyes as a baseline for future visits.

Appointment four was a closer look at the inside of Jack’s eyes using the new OCT scanner equipment (approx. 15 minutes after some drops had been added to dilate them).  The scanner looks a bit like a hairdryer and works by pointing it at an eye and clicking to take a photo.  Whilst this sounds easy it’s more difficult in practise with infants as they need to keep their head still for at least two seconds to allow the correct image of the back of the eye to be captured.   It took several attempts for each eye for Jack as by this point, he was starting to get tired (so his eyes were moving quicker), but they were pleased with the pictures.

The final appointment was with Professor Gottlob who summarised findings for the day and thanked us for our help taking part in the trials.  It was really good to meet her.  She explained it’s likely Jack has Ocular Albanism but they would like to do more tests including a repeat of the ERG (electro-retinogram) and VEP (visual evoked potential) ones he has had at Newcastle, tests to check whether he will benefit from wearing glasses, and take more images with the new OCT scanner.

This diagnosis has come as a bit of a shock, as we thought this had been ruled out by the previous VEP and ERG tests, but I’m also really glad that we are finding out sooner rather than later so Jack can get the best treatment possible.

I am currently eight months pregnant, carrying a little brother for Jack, so the next appointments will be scheduled in four months, when they’ll be able to test the new baby too.

I have started to research Ocular Albanism and found the following information on the NOAH (National Organisation for Albanism and Hypopigmentation) website helpful.

Amy Atkinson, a friend I’ve been writing to whose son has recently been diagnosed with Ocular Albanism has also provided a good summary of the condition on her blog “Through the Eyes of Liam” on the Ocular Albanism and FAQ pages.

There is still a lot more to learn, but fortunately there seems to be a lot of help and support available.   And despite this new information, Jack is his usual lively self – he started walking last month which has progressed to running – and it’s been great spending a lot more time with him since I’ve started maternity leave.



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