So I'm pumping Tobys body with 400 mg of epilim 1200mg Vigabatrin 20mg prednisolone tablets and now 200 mg of stiripentol DAILY ! Although spasms are still at bay the horrific myoclonus is back Having more than 50 jackknife seizures a day I can't so much as cough without Toby falling forwards and smashing his head or biting his lip or his tongue ! He won't keep his hat on he's desperate to play and every sound / movement is causing such pain and disruption!
Mark and I spent one morning crying intermittently as we watched our boy sat in a padded travel cot crying and having seizures ... Unable to do any more than what we had we waited anxiously for consultant to call .... He did and he has prescribed clobazam - sedative type drug - apparently it works well with stiripentol - we shall see !
I'm utterly devastated at this point that it has come to this ? More waiting logging phone calls explanations unanswered questions my next blog will update you on this 'magic potion'
Bye for now xxxx
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