Duane Syndrome

My daughter's just been given a diagnosis of Duane Syndrome and the amount of information out there seems to be minimal. Mordy's four and has bilateral type 1. She's just started school and while we were waiting for a diagnosis nursery were really good with her (trying to make sure she always had a central spot on the carpet at story time etc because of vision issues) but I'm feeling a little lost at talking to school about it as we've had nothing but a phone call from the hospital to chase up appointments/MRI results which is where we were given the diagnosis and then we seem to have just been left to our own devices so I'm a bit unsure what to say to school as we've had no information or support from the eye department so I don't feel able to really tell her school "this is what the problem's called, this is what it involves, here's the support she needs" because I don't even know the answer to these things myself. I don't even know how well she can see when it comes to things like riding her bike or if learning to read's going to be a bit more difficult because of how her eyes work. Any other Duane families out there who are maybe a bit further down the line? 

Comments

  • Hi, my son has this condition in his left eye, he is 10 and gets on quite well, he can read and write he wears glasses and has regular eye tests but copes quite well. My son is partially deaf in his left ear and apparently this is linked? But my son also has sacral agenieses and this to could be why his slightly deaf 
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