Helen - posted on 06/13/2011 ( 2 moms have responded )
My 21 month old son has just been diagnosed with a rare chromosome disorder called Chromosome 18q Deletion Syndrome no one knows exactly what this will mean for him in the future but we have been told that he will more then likely suffer with learning, development and speech difficulties and that his nerves don't send messages around his body properly. He also has a high chance of suffering from aggression which he is already showing signs of (unfortunately for his big sister). He has quite a lot of physical symptoms of the disorder including a small jaw, wide nose, thinning of the ear canals and dimples all over his body, as well as having a history of Acid Reflux, Asthma and ear and chest infections.
On top of this he was diagnosed at 9 months old with having Nystagmus (wobbly eyes) and has just been registered as being partially sighted due to this - his vision is currently 6/60 in both eyes and will be monitored closely for his whole life.
There is no cure for either of my sons medical problems although with his eyes operations are available from around 12 years old to adjust his eyes most stable position which is currently the left side of his eyes to a more central location by shortening muscles in his eyes, and ease his head posture that he has developed.
I was just wondering if anyone else is going through this sort of Chromosome disorder or Nystagmus with their child or if they themselves are suffers of either? or if anyone knows of any ways i can help my son with his learning and development at this age to help bring him more in line with his peers.