My son Hunta had his second surgery to remove a craniopharyngioma on June 12th and had 2 massive post surgery tonic-clonic seizures due to low sodium (120).
The endos instructed nil by mouth and no DDAVP to “dry him out” and increase sodium - which worked but was hellish to go through! As we all know, not allowing someone with DI to drink is torture, let alone as a 21 month old.
I am interested in hearing from anyone if they have had this happen?
Our endo seems to think that Huntas dose pre surgery was too much and that he would have been running on a low sodium anyway, and then the surgery would have been anough to lead to the seizure.
Hunta uses the Minirin 200mcg tablets and has 50mcg at 6am, 50mcg at 1pm and 150mcg before bed, and has a big breakthrough from 5pm to 8pm.