r/nystagmus

Hello everyone,

My son was diagnosed with congenital idiopathic nystagmus at 2 months old. At 12 month appt. he had a vision of 20/190 using TAC which my doctor believes will keep improving as he grows into a toddler. My baby is taking independent steps between me and his father like 8-10 steps on his own but only does it when placed in a standing position. He’s not able to get into independent standing on his own ( does it half way and sits back) and he just turned 15 months old. We have had all mris and eye tests when he was under 1 year old and all were normal. We have no reason so far as to why his horizontal nystagmus is there. He cruises well, crawls well, climbs stairs non stop, is active otherwise. I just don’t know why he’s not able to independently stand from the ground yet.

Is there someone with a toddler with congenital idiopathic nystagmus here? Please please help me out. My pediatrician is just asking me to wait out but he is already 15 months old and I see kids running around this age rather than taking just a few steps! Please please help me with your thoughts and advice. I just don’t know what to do! I don’t even know if it’s a nystagmus thing or just a normal baby thing. Thank you so much for reading this.