Happy Times!

Ian was away on business so it was just Chrissy & I this weekend. From the moment I picked her up she was jolly and chatty. Throughout her visit there were fewer shouting episodes and, unlike last week, no swearing.

Overall, Chrissy was more compliant and able to focus on the task in hand. This morning I let her take things at her own pace. She chose to play on her laptop before doing anything else. She then let me know when she was ready for her bath and, after I got her dressed, I left her to eat her breakfast on her own with no distractions. Her obsession with food vanished when she came off antipsychotics - but surprisingly she hasn't lost weight. Hopefully we will be able to address her diet when she is living in the community and no longer eating communally.

I was even able to have a shower while Chrissy played quietly downstairs on her laptop. Unheard of! I sneaked downstairs to check that she wasn't stalking one of our cats and was reassured to see that she was sitting contentedly at the kitchen table selecting a DVD. This ability to entertain herself is new - usually, if she is left alone in a room, she seeks us out and shadows us so closely that we get stuck in doorways and fall over her whenever we turn round. She has taken up old hobbies like drawing and writing again.

'My Dinner' by Chrissy

On our morning stroll to the village shop Chrissy clutched her banana-&-chocolate-mousse-in-a-bag and posted my letters then stopped for chats with a lady that used to work behind the till and my neighbour. It reinforced my view that she should move into a familiar community where she will be among people that know her.


As I drove her back to the assessment & treatment unit she kept smiling at me and stroking my shoulder. These genuine shows of affection have been increasing over the past few months. She often spontaneously kisses Ian and I, and says: 'I love you sometimes.'

Only downside is that she's had two nocturnal seizures this week but one or two a week is fine and may account for her calmer behaviour.

Tomorrow Chrissy starts on vitamin B6 (pyridoxine), which may curtail some of the negative behavioural effects that we've seen since she's been on Keppra. I was pleased that her psychiatrist took it upon himself to do his own research & agree to a trial of vitamin B6. Chrissy's neurologist hadn't been convinced.

So this weekend Chrissy's behaviour, ability to engage, alertness, focus etc. were as good as they were just before she went on Keppra but was having too many seizures. Have we finally achieved the successful balance we've been seeking for so long?

Only time will tell....




I am a SWAN UK (Syndromes without a Name) blogger

Epilepsy & Behaviour (2)

I first posted on the reciprocal relationship between epilepsy & behaviour a year ago http://jgregorysharingsstories.blogspot.co.uk/2012/01/epilepsy-behaviour.html This post is on the same topic with a different drug.

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