Hi OFH,
Oh the poor sweet thing, she’s really being put through the mill isn’t she, my heart goes out to her and to you. What did the MRI show regarding her cerebellar tonsils ? because low-lying or herniated cerebellar tonsils can cause high intra-cranial pressure to be missed on a Lumbar Puncture (LP) if they are bunging up the hole.
I think any level of empty sella, in the absence of a cyst or the like, is indicative of raised intra-cranial pressure, as is the papilledema and the flattened backs of eyes, so why on earth was the lumbar puncture necessary – oh probably to test the CSF for infection or whatever.
I can’t overstress the importance of correct spinal (especially cervical) alignment in these circumstances, try and encourage her to sit straight with head balanced well over shoulders and place cushions for support if she finds this hard, as many with EDS do. A soft horseshoe shaped cushion to support her neck might be beneficial too and it can stop the back of the head from being pushed forwards, all these things help. Has she had an injury doing sports or anything ? What was the alignment of her vertebrae like on the scan, do you have a copy ?
Regards
Barbara.