At the end of last year I told how we'd got Chrissy back at last. Unfortunately her seizures took over and, just before Christmas, Keppra was introduced as an adjunctive antiepileptic to Epilim. Since then perfect seizure control has been achieved but her behaviour has become increasingly bizarre. Since Keppra's most serious adverse effects are behavioural, we need to closely monitor its benefit-risk ratio for Chrissy.
Ten days ago I agreed with Chrissy's doctors that we should halve the dose to try to achieve a better seizure/behaviour balance. Last week I thought things had levelled out when her ward manager said that she seemed much more herself. Trouble is he'd only called in to see her in passing, & appears to have reported a snapshot view. Other ward staff have reported similar behaviours to those we've seen - shouting, swearing,& inability to focus. Yesterday her nurse told me that she was too distracted to take her morning meds - although they somehow got her to take them eventually.
At the weekend we, too, were unable to get Chrissy to focus on the task in hand. We were dismayed to see how bad things had got. She had periods of being herself then suddenly exploding into staccato roars & shrieks: 'Mummy! Shut up! Bastard shit! Fucking bitch! I spit at you!' It's like someone with Tourette's Syndrome on overdrive. She either stalked us as if she was trying to goad us or took herself off to a chair on the landing, still shouting. These shouting episodes can last for an hour or more, and even when she settles she's still very restless and whingey.
On Saturday morning I had a struggle to get her to focus long enough to climb into the bath, take her tablets or eat her breakfast. She kept up a constant stream-of-consciousness commentary as if she was on speed. She eventually exhausted herself, & my patience. At one point she said: 'Chrissy's poorly & screaming.' (In fact we haven't seen any screaming, stripping behaviours.) 'Poor Chrissy,' I said, & signed: 'Are you cross or sad?' As she answered & signed 'sad' my heart melted & my irritation with her evaporated.
Eventually she sat cross-legged on her bed & said: 'Who's that? What's that name?' I followed her gaze to the foot of her bed. Did the pattern in the rails look like a face to her? 'There's no one here,' I said. 'Is it a witch?' she asked. (A new word she uses frequently but not always appropriately!) She leaned forward & pressed a gold circle in the pattern that looked like a button. 'It doesn't work,' she observed. Then she started shaking the curved rails at the end of her bed as if she expected to bring them to life!
Since all the medication changes Chrissy has been far more aware of everything around her but this was very odd. She then asked me to 'do' her covers, burrowed into them & said 'goodnight mummy.' I left the room & when I came back 10 minutes later she was fast asleep. It's unheard of for Chrissy to get into bed fully clothed without asking for her curtains to be closed, whatever the time of day.
All these changes in Chrissy's behaviour & normal routines make me feel very uneasy. It's as if her personality is being sabotaged.
I had first discussed the timing of the dose with her ward manager 11 days ago. We'd agreed that it made sense for the dose to be given in the evening, as most of her seizures are nocturnal. However, for some reason Chrissy's doctor had prescribed it in the morning. I am still waiting for him to review the prescription. I had also passed a message on to Chrissy's doctor to ask him to consider adding vitamin B6 as studies have shown vitamin B6 deficiency may occur with some patients on Keppra, and that its addition can curtail some of the adverse psychiatric effects. I'm still waiting for answers & hoping that this is a temporary setback that we can find a way through - otherwise we're on the roller-coaster ride of yet another drug trial.
I am a SWAN UK (Syndromes without a Name) blogger
