The problem with studies associated with these syndromes is that the syndromes are so very rare, it's really difficult to find enough people to test!!
Could you post a link to that study or tell me where I can find it? I'd love to read that and I don't think I've stumbled across it yet. I'd really like to send it to Glenda and see if she knows about it.
In the meantime, though... what has your pediatrician said regarding glaucoma screening? It's not like a screening for glaucoma is expensive or invasive... it's annoying, yes. We're all supposed to get our eyes checked anyway. What is the objection?