Hey, very down well Jack's seizures were under cntrl . Sort of, til we went on hols t Berwick at start of summer hols and he started seizing every day again after a bath(again),mild and occasional tonic clonic, not always needing diazepam tho but nw he is having tonic clonics really bad, had a bad one after bth last fri, breath holding and lips blue etc, I actually had a panic attack cos it just threw me as he hadm't had one like ths in mnths, needed 2 diazepam but had quite bad 1 sat too altho no diazepam needed, and tonight after bath had realy bad one again, breath holding over n over, his lips were actually purple, thought I was losing him..., n he had tonic clonic stage and was totally shaking(his hands), was soo bad
Consultant is gonna try fit him in this week, if not early next week, to asess meds again, ws not meant t b seen til Oct from Aug an this is first time he has asked t see him 2 MONTHS later, usually 2, 3 weeks at most, so was really happy at tht. Nw we are bk at square 1!!!! Pissed off
He is on lamotrigine 3 dispersable tabs morn and at night and 4ml morn n night of epilim and 4ml nitrazepam morn n night. He has put on 5lbs in last 8 weeks or so, which diatecian thot was a lot in short time, so maybe he needs meds sorted again cos put on weight n gettn bigger...he was 18 mnths yesterday...But dietician sed he is 2 stone!! Doesn't look it at all....or ad be worried, also what dietician needs t atke into account is Jack can't yet sit never mind walk, so harder t get weight off if not mobile....so sad, hate this bastard epilepsy, can deal with everythin else with his genetic disorder, but HATE BASTARD EPILEPSY!!!!!!!!!!!!!!!!!