Nystagmus is an involuntary movement of the eyes which often seriously reduces vision. Few people with nystagmus can drive and most encounter some difficulties in every day life, education and employment.
I was unaware that I had a family history of nystagmus. I knew my dad had poor eyesight and that his eyes moved a bit but, as I'd grown up with it, to me it was completely normal. Ok, my dad couldn't drive because of it but again, because I grew up with it, I never gave it any thought.
After my son was born and we got his reflux under control we settled down to family life. I began to notice Archie's eyes moving around at about four weeks but, thinking he was just very inquisitive, I left it. Then folk started to point it out and ask if it was normal, well, now you come to mention it I'm not sure. Away I went to Google and read about nystagmus, still not making the connection to my dad. We made an immediate doctor’s appointment and unfortunately, although the doctor had heard of the condition, she was clueless as to how to proceed and even asked what I'd discovered on Google!
We were made to leave the room while she called the hospital to speak to a specialist. This was making me very nervous indeed as, being in the medical profession myself, I know this means they're quite worried. We were called back in and informed we'd be seeing a consultant at the children’s hospital within three weeks. She couldn't answer any of my questions so I went home and informed my family via text message as I didn't want to speak to anyone. It was now that my dad called and told me about his condition. I was totally shocked but relieved as he lives a perfectly normal life and you wouldn't know he had it. Although, now knowing this was the reason my dad couldn't drive, I looked into it again and discovered that a high percentage of sufferers cannot drive. Coming from a family that is heavily into motorsport and having a dad that was a professional rally driver and world champion I thought this may hit Archie very hard when he grows up so I made the decision there and then to tell him from an early age should that be the case.
At our first appointment we saw the consultant and he immediately asked if he could video the eye oscillation as they don't see that many babies with such a pronounced movement. I agreed. As soon as the camera came out Archie started smiling and it broke my heart as he was unaware of what it was for. He had an eye drop test and a whole lot of others that I can’t remember but the general consensus was that he would have to undergo a MRI scan to check there was nothing sinister going on in his brain. I immediately knew from my work that this would require a general anaesthetic. Not my ideal situation but if it meant getting a diagnosis and possibly a treatment I would cope. He was also to have a light test to determine the wiring of his retina to the brain.
The day of the light test we went in and I was, as usual, anxious with Archie taking it all in his stride. We were straight into the room and I sat on a chair with him on my knee while electrodes were attached to his head. They don't deliver a shock by the way, they just measure the brain waves. He loved the wires hanging off them so I had to keep him occupied so he didn't wreck them. Then the lights came on and he was in awe! He loves lights, so much so that he tried to pull the lamp closer to him and broke it, yes my baby is freakishly strong! At the end of the test the lady conducting them said all was normal. Excellent!
Next test was the dreaded MRI. We arrived in the morning with a starved child, not fun. We stuck him in the cot provided and proceeded to entertain him to keep his mind off the rumbly tummy. He loved the attention. I found out we were first on the list with him being the youngest and we were sent for on time. We made our way down the twisting maze to the MRI anaesthetic room and I discovered I wasn't as anxious as I expected. Upon entering the room the anaesthetist wasted no time, gave him the oxygen and gassed him down with no messing, I couldn't help but laugh as Archie tried to eat the anaesthetic tubing. Hungry boy! My other half, Barry, was very obviously shocked I didn't come out in tears, as was I as I fully expected it. We had time for lunch then returned to pick him up. He didn't cry, he just went straight back to sleep then devoured a bottle and a full jar of mango when we got back to the ward. We were allowed home pretty fast.
We heard nothing for ages from the hospital but were assured that if there was anything untoward they would have picked it up immediately. So I continued with the visual stimulation and discovered there is nothing wrong with his eyesight as I can't leave the room for a second without him chasing after me like a greyhound. We recently had another appointment with an orthoptist. I didn't fully understand why but he explained all about the tests and findings and we were very happy to discover that he doesn't need glasses, his vision is very good, his tests were all normal and there is no reason at the moment why, he couldn't drive one day. Over the moon doesn't cover it, although I'm only cautiously optimistic about the driving, I understand this is a condition which is very hard to gauge in babies.
I feel we need to raise awareness of the condition as most folk don't know what it is and even the professionals that do don't fully understand it therefore advances over the years from when my dad was diagnosed have been few and far between.
The condition does not affect personality, let me tell you, anyone that knows Archie will tell you that he is very happy, very outgoing and loves to be the centre of attention... long may it continue!
For more information on nystagmus please visit www.nystagmusnet.org.
No comments:
Post a Comment