As I have posted lots about this year, DS has spent most of the year in and out of hospital with his out of control seizures. We have had a pretty rotten time at the hospital where our neuro is based - awful nursing staff, no communication, no interest from neurologist etc. The last week we had there in March, we were basically told that they had tried everything that might work for DS's non convulsive status and that we would have to accept that "children like DS" are prone to bouts of this that are hard to treat and that we should basically go home and sit it out. We even saw the neuro last week when DS was in a bad way and he made suggestions about changing/upping meds etc in the next three weeks before he starts keto diet.
So.. this week things are really really crap and we know there is no point going to A&E with a view to trying to see a neurologist as they will just send us home ( yup, sometimes they don't even send a neurologist to see us) so DH decided to take DS to the next nearest hospital to us which has a good neuro reputation. Another world. Within minutes of being in A&E they had a line in DS to administer a med to try to bring him out of his non convulsive status. Then they arranged for an EEG later that day ( we were refused an EEG at previous hospital on numerous occasions) and they stuck with it,even when DS was hysterical due to emergency med he had been given ( other hospital consultant ordered technician to stop recording after 5 mins as DS was crying and he said there was no point) And to top it all, the neuro consultant came to see us, said that his EEG showed no signs of Lennox Gastaut and that his history of seizures didn't really fit LGS( horrific scary epilepsy sydrome) that other neuro has just thrown at us with no support or explanation, they suggested way forward and new meds to try!!
The nurses are lovely, spend time with DS and give him the right meds at the right time. The ward might not be as modern, but bloody hell, it's a different world.
So. DS was given of of the new treatments today which I don't think has had a huge effect, but the relief that there is someone out there who will actually try something rather than just give up on us.
Sorry for that rant - spent much of the time on ward yesterday sobbing with a mixture of both relief and anger that we have spent the last 4 months being dismissed, accused of exaggerating DS' condition and finally someone is listening (a little faint one, but it's a smile)