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samiamismeParticipant
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).
samiamismeParticipantHi Dr. D,
I couldn’t find my son’s medical records, not all of them anyway. I called his old pediatrician and they will look for them but it’s difficult since they’re archived. I don’t ever remember the doctors measuring head circumference. Do you think this was routine in the early ’90’s? If hydrocephalus was an issue, would he have had a larger head (noticeably)? I’ve never noticed that he was anything other than average (well, really I think he’s exceptional, but there may be some bias there :).
At 19, he has a larger frame, but seems proportional to me. He thankfully doesn’t have cataplexy but he does have morning paralysis which has been controlled by meds, which also have reduced his headaches significantly.
I asked my mom about my head circumference and she also said she doesn’t remember anyone measuring me (must run in the family). She did say that she suspects they did because the doctor commented the first time he saw me that he was surprised that my head was so perfect since I was a preemie (2 months). I guess preemies have higher foreheads and I do not. I can’t find my records either. We were military and lost many boxes of things over the years and I suspect they were among them.
I’m not really sure where to go from here. Do I ask for more tests for his eyes? What kind would they be as it seems he’s had all the ‘special’ eye tests that a neuroophthalmologist did.
Thank you for your information.
Sherri
samiamismeParticipantMy son loses vision in one eye frequently throughout the day. All his eye exams, including the retinal test, comes back negative. Although the neuroophthalmologist said the area where his nerves come together has a smaller opening so he feels this is pinching on the nerves. I feel that yes, this may be contributing, but this came on suddenly (about years ago now, when he was about 16) which tells me that it may be something more? I was just diagnosed with EDS – Classic and Hypermobility. I am also sure (still working toward getting to docs) that I have POTS and Mastocytosis (or MCAD). My son exhibits many signs of EDS but not POTS or Masto. Does it seem like there are eye issues with EDS? Could this be what’s causing his issue? He’s learned to live with it, and that was the docs suggestion, instead of pursuing it further (I think he didn’t want to admit he was stumped…he was one of THOSE). Are there any other tests I should have him go through and which kind of doc would do them? He’s had MRI’s in the past for sinus issues (nosebleeds), migraines, and narcolepsy (all of which he has), but all tests always come back negative. I appreciate everyone’s ideas/thoughts on this. Maybe we’ll touch on something that I can bring to my docs. Thanks!
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