Hi all, sorry for the delay in reply. And really appreciate all of your support and advice!

My son has been treated by Lucile Packard Children's Hospital, and per your suggestions we just got into touch with UCSF as well to get their opinion. Given the rarity of his case, we'd like to get as many expert opinions as possible. Do you know if Mayo offers remote consults?

@astaingegerdm His symptoms started in mid Feb and they confirmed intracranial hypertension in early March via observation of papilledema.
His Stanford care team is led by a neuro-opthalmologist and a neurosurgeon among others. I believe they are doing their best in trying to manage his pressure, but so far still struggle to find the primary cause.
He is currently on 40mg/kg diamox and has not had steroids. They are thinking of starting him on dedracon once all the tests (including a potential biopsy of a bone lesion in his clivus) are done. Outside of that, the current course is repeated LPs to maintain the pressure.

Thanks again and welcome any additional thoughts!