When did you/your child realise you had Nystagmus.

[kez85]

HI, Just a quick thought. My son Is almost four years old, and was born with CN, i have tried explaining to him his eyes are different and why, but it does seem to go over his head. For as long as i can remember he's moods are awful when his tired, we have him under a paediatrition to rule out any other conditions. Half the time he seems absolutely fine and his nystagmus doesnt seem to affect his ability in anything, but i cant help to think his nystagmus affects him more than we know. Other times i convinced he has ADHD or something else, as he really is disruptive to the family life. Im not sure if he is just frustrated due to lack of vision so he is disruptive.

Mainly i was wondering when did anyone realise they had nystagmus and actually understood it, as i really dont know how to help him, i ask him what he see's and when i think he's struggling i ask, im not sure if hes just agreeing with me or actually if he is suffering?

He's been going to pre school for almost two years, they say he's doing fine and he's nystagmus doesnt affect him. The VI teacher comes in twice a year and she seems to think hes absolutely fine, but he's started saying the last couple of months he doesnt like pre school and really kicking a fuss so im worried hes struggling, or just bored. there has been alot more children joined the pre school lately, im wondering is he getting overwhelmed with lots of more children. im concerned as hes starting school in september and he's moods are so irratic, outside people dont often get why hes behaving like he is. I think i'm just being an over protective mum but then i dont want to not help him! im so frustrated and in war with myself!


Very confused and worried for him at the moment

Thank you

Kerry

[justme]

I was diagnosed with nystagmus at the age of 19 witch is rare considering I was born with nystagmus. My parents didn't really understand why I was unable pass and eye exam and neither did I. I remember them taking me to doctor appt. but I didn't look forward to it. I was prescribed glasses through out my childhood but they did nothing. My father began to get frustrated and angry with my condition to the point were he stopped taking me to the doctors. Anyhow I am now 28 years old and I have realized that I am traumatized, I don't blame my parents but I wish they had tried to help me and support me more rather than giving up. It's not easy living with nystagmus I my self struggled in school, I was held back one year because of my inability to focus. Now Im married with kids of my own and work as a Financial Counselor for our local hospital, I don't have a drivers license because Im terrified of having to take an eye exam. Over all I came to terms with my condition im not gonna lie I have my days but all I can so is move forward. I hope this helped you.

In regards to your son well give him tons of support he ia gonna need it specially once he starts school kids can he cruel and don't understand how it affects us.

Wish you and your son the best