Well what a big bummer. I sent for my son’s pediatric records and they only had a few pages from when he was two and hospitalized. No head circumferences, so I don’t know about the hydrocephalus. One interesting thing I read in his records is that the nurse said “no one in family with connective tissue disorders”. Of course that was 17 years ago when we didn’t know we had anything wrong. I wonder what they would have diagnosed if I had said yes we have EDS! He was hospitalized with terrible, screaming (literally) pain when he was two. They chocked it up to toxic transitory synovitis because they couldn’t ever figure out what it was. Hind sight….
As for his eyes, I still don’t know what to do, or who to take him to see since he’s apparently seen all the experts and have shown all normal tests. Yet, losing vision in one eye intermittently cannot be normal and I don’t really buy the theory that he has narrowing of the optic nerve. If that were the case, he’d have had this problem from birth (I would guess).