Lucas' story

​Lucas was born in January 201x. During the hospital discharge screening on day 3 the registrar could not see a red light reflex in his left eye. After additional reviews by the consultant, Lucas was diagnosed with a likely left congenial cataract. On day 5 we attended the children’s hospital for an urgent consult, and surgery was scheduled for February (7 weeks of age) for removal of the significant left congenital cataract. ​

​A couple of weeks later Lucas was fitted with his first hard (RGP) contact lens for his left eye and we started patching.  At 12 months old, Lucas had surgery for bilateral strabismus: left eye medial and lateral muscles and right eye medial muscles as day surgery.

After a number of lost lenses, we found the perfect fitting and haven't lost any in two years!  We have had issues with patching from as soon as he could pull the patch off. At around 2 years 11 months we faced a dilemma as he had had pretty much no patching for the previous six months. As a last measure it was decided to continue to try patching on weekdays and use atropine on weekends. We had one dose and Lucas became severely flushed in the face and after a call to the eye registrar we had no more drops.

We thought we really needed to give patching one last try to have any chance of his left eye having function. We commenced a sticker book: every 3 hours of patching = 1 sticker, 6 hours = 2 stickers, and at every 10 stickers he could choose something out of the 'present box'  - which contained a mixture of cheap cars, textas, play doh, colouring-in books and so on. I also wrote a long letter to the daycare staff putting some responsibility back on them as he attends 5 days a week!  They were good to start with, but then it dropped off being documented. We discussed this with his teacher again and they modified a table to make it easier for any staff to complete. We also were asked to put his patch on before he got there each day! 

Some days are better then others but we have now had 6 months of solid patching and our last reviews have been very positive and we are down to 4 to 5 hours of patching per day for 5 days a week! The last review saw him actually allow his eye pressures to be measured without being held down by 4 people. So hang in there, it does get better!!  Story by Kristie