This afternoon Violet had her Neurologist appointment.
Pop a bottle of champers or whatever you all drink out there, as it has now been 1 YEAR since Violet's last seizure and given that all hers end up status epilepticus, that is so damn good to hear Epilim has made the world of difference for her! After 3 years of her having epilepsy, it's great to have them finally under control!
He is concerned about her daily headaches and will be talking to Violet's Neurosurgeon to see what his thoughts are on these. It may come down to medicating her daily with something to help them instead of constantly using Panadol or Nurofen...mainly Nurofen as the Panadol does nothing to touch it. He is also wondering whether ICP monitoring would be worthwhile to see if she does have any extra raised intracranial pressure on top of the excessive pressure she has regardless of her shunt, but I would prefer not to as it is an invasive procedure that may cause more problems.
So we await to hear their decision on what the next step will be.