WARNING DISTRESSING
Jackson continues to have these episodes (they can last up to 2 hours!) followed by a wipe out sleep he is barely conscienous after and wakes up to pain. No-one has a clue what they are or why they are happening we have had another EEG today but im not expecting to see any results are all the others have come back as normal.
The doctors originally thought that it was something called Reflex Anocix Seizures (RAS) but todays consultant said it doesn’t tick the right boxes for it to be that so we are absolutely clueless.
while these episodes are happening we cant challenge his fluid intake so we are nowhere near coming home as he cant come home on IVT.
We are in a vicious circle its hard its tiring and its very stressful. If anyone has any clues please let us know. Thank you xx