Saturday, 25 June 2011

Unsettled Times and the Chocolate Hostage!

I knew as soon as Chrissy walked through the door that there was going to be trouble. She was wild-eyed, flappy & agitated. Then she took off, running frantically from room to room again as she did last week. Her finale was to plonk herself fully clothed in our (empty) bath. Then off came the clothes & feet went in mouth to be bitten & bent back. (Chrissy is double-jointed.) At this point her younger sister, Alex, walked in to see what all the noise was about. She smiled wryly at the sight that greeted her & tried to distract Chrissy but she couldn't snap her out of it. Chrissy was volatile all evening. At one point she let me take both hands & gently squeeze them. The pressure stilled her & she allowed me to take her through deep breathing exercises. She visibly relaxed for a while. The many bruises & abrasions on her body signal how unsettled Chrissy is at the moment. No one's sure if it's the meds changes, the effects of a new extremely challenging patient on her ward or just another bad patch. We always try to attribute difficult times to something specific, such as too many changes in her routine, but often it's hard to pinpoint.

Bed-time went surprisingly smoothly & Chrissy woke up this morning much calmer. The only outburst came when we were about to take her back to the hospital because she wants to take everything except the kitchen sink with her. Taking favourite foods in a carrier bag, tied with a bow, is a self-soothing ritual she's devised to help her cope with transitions from one place to another.

On the journey back I had to refuel because Alex had borrowed my car and the petrol gauge was on red. I try to avoid stopping on car journeys with Chrissy because she tries to escape to get diet coke, which is her main obsession. Predictably, Chrissy insisted on coming into the petrol station shop to buy diet coke. She also grabbed a big pack of Maltesers. I tried to coax, bribe & trick her into giving up the Maltesers because she's overweight but she ran to the back of the shop with her treasures & started flapping & shouting. I know when I'm beaten. The nurses reported later that they'd used lots of cloak & dagger distraction techniques to hand her four Maltesers from the packet, give her the empty Malteser bag to hold & hide the rest. The diet coke was topped up with lots of water, which Chrissy accepts. Some battles just aren't worth fighting!

Friday, 17 June 2011

Animals, Bedtime Rituals and Autism

Just Chrissy & I this evening as Ian, her stepdad, has gone to pick up my youngest child from uni. I managed, by a combination of knowing when to be firm & when to indulge, to keep the peace until 10pm.

Anticipating what Chrissy will do next is exhausting. I left her looking at 'toast & jam' in the kitchen equipment pages of her Argos catalogue to get something from another room. All was quiet. Then she came in & told me she had 'kicked' the cat, 'hurt' the cat, & said something I couldn't grasp about the cat's tail. It didn't bode well.

Our two cats were nowhere to be seen for a while. Then they eventually slunk back into the house looking wary but unharmed. Chrissy either ignores them, notices details about them ('look at cat's necklace' when it had a new collar) or torments them when she gets the chance, sometimes playfully, sometimes suddenly pulling their tails & alarming them. She knows it’s wrong on one level because she grasses herself up – she’s totally guileless – but I suspect that she is also entertained by our reaction. When she's in that mood the cats normally give her a wide berth & she may have been saying she'd hurt them before thought became deed. She sometimes says she's done something, ie wet herself, when she wants to do it, ie go to the toilet. She is confused by tenses & sequences of events.

Chrissy was intent on further mischief by then & went into the kitchen to demand 'grey cup,' which means a glass tumbler. I use plastic cups as she's prone to throwing them when she’s agitated. My refusal to let her anywhere near a glass tumbler resulted in her first outburst of the evening. It was relatively mild, lots of guttural roaring, hair-pulling & hand-biting - it didn’t progress to stripping off & running around the house, as it did last week. She was over-tired I think & undergoing meds changes that may be making her feel strange.

Once she calmed down I managed, aided by symbols for 'clean teeth' & 'sleep' to lure her upstairs to her bedroom. We then had a great fuss over her 'cushions' - she asked me to turn them over several times - & her blanket. I haven't figured out what the issue is with her blanket. She kept saying ' do my cover.’ I pulled it up & tucked it over the top of her duvet so she could hold it, & settled it around her but she kept on. 'What exactly do you want me to do with your blanket?' I demanded in exasperation. 'Make it square,' she said. I did my best to comply but I'd made it square & neat over her anyway. She eventually settled down & I asked her if she was happy with it. 'Yes,' she said, allowing me to kiss her goodnight & leave her room.

Now I can hear her in bed repeating 'do my cover.' This happens during the night too. I’ve just gone through the whole pantomime again with her, tucking it this way & that, & she’s still repeating ‘do my cover/do my blanket.’ Bloody maddening. Need a solution....

Sunday, 12 June 2011

Medication and Autism

Chrissy has been having an unsettled couple of weeks for no obvious reason. I was concerned to see that two Paracetamol three times a day have been added to the long list of medications she's on. Since she's been in hospital there has been an increase in the number of prescribed medications rather than the decrease I'd hoped for. She has been on Movicol, a medication for constipation, for months now. Chrissy has never suffered from constipation at home, but medical professionals have advised us that she has shown symptoms on the ward &, like many of their patients, becomes very irritable when she needs a poo, & Movicol is an exceptionally gentle laxative without unpleasant side-effects. I have asked several times how much longer she needs to be on it but have been advised that it should continue for the forseeable future as stopping it would make her more irritable/cause discomfort. I want further reassurance that this is not a case of medication overuse & will mention my misgivings again.

Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.

I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.

Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?

Friday, 3 June 2011

Feral Outbursts

Had a horrendous evening with Chrissy. She was simmering all evening, nagging, repetitive & agitated, then she kicked off with a massive outburst like the ones she had at Xmas. No obvious trigger or change in her normal routine. The explosion came when we were sitting on the settee watching TV & she asked for one of her catalogues. Ian helped to her find the one she was after & she started leafing through & commenting on photos in it. Then she started picking at some dry skin on her hand & became increasingly agitated. I tried to hold her hand but she wasn't having any of it. She elbowed me in the face – not deliberately – as she got to her feet, roaring over & over ‘want catalogue!’ & ran from room to room, beside herself. She then ran out of the front door onto the drive (something she's never done before) with me in hot pursuit, & stripped off. I called Ian in a panic, & he heaved her up off the ground. No mean feat. (She’s about 12 ½ stone). He managed to half carry her back into the house before anyone could have seen anything. Chrissy fought against our attempts to cover her up & continued to tear frenziedly around the house. She then threw herself on the lounge floor still roaring ‘want catalogue!’ yanking at her hair, pulling one leg right up over her head so she was virtually doing the splits, biting her hands and feet, yanking at her skin, & slamming her heels down on the wooden boards. (She once broke a heel doing this). A strange musky smell came from her, as it sometimes does in very severe/prolonged outbursts. She behaves like some feral creature, no longer human, as her limbic system takes over. The whole episode lasted about half an hour. They have lasted for two hours or more.

Despair and helplessness are my overriding emotions right now. 18 months in hospital & still so unstable. We never know what to expect from one week ot the next. Her meds changes are on hold because her platelet count has dropped, probably due to an increase in one of her drugs in readiness for the reduction of another. (It’s a drug reaction she’s had before & it once became life-threatening).

I’ve been asked to write a 1,800-word piece for a national newspaper (weaving in my views on the Panorama programme) about the reasons why we put Chrissy into residential care. Where do I start & would it really be a good idea right now?

Wednesday, 1 June 2011

Panorama & the Question of how we care for Society's most Vulnerable Adults

I watched this shocking programme through my hands in some parts & switched off in tears when it got to the most disturbing part - a vulnerable young woman left shivering outside on the ground after being repeatedly doused in cold water by her so-called carers.

Chrissy is in a privately-run hospital like the one investigated last night. She has also lived in residential care homes. I’ve had fears, but never real suspicions, about physical abuse. However, some would argue that physical abuse includes being needlessly chemically coshed, which has happened to Chrissy. (A safeguarding meeting was held to deal with it.) Because Chrissy frequently self-harms, injuries from abuse could be easily masked - and she wouldn't have the language to report it.

The crux of the problem, which wasn’t the programme’s main focus, is the lack of effective support & treatment for complex & challenging learning disabled adults. They are there because they're exceptionally difficult to manage. As in Chrissy's case, several care home placements may have broken down, yet carers are often inexperienced & poorly supported with only the most rudimentary training. These privately run hospitals & residential homes are there to make money. The expertise that they are being paid huge sums like £3,500 a week for is insufficient & spread far too thinly across too many patients.

We need more long-stay places with a therapeutic environment for patients like these - but we must get it right. Too many council-run assessment & treatment units have been closed down, leaving an over-reliance on privately-run hospitals like the one on Panorama. In the meantime, from immediate effect, there must be unannounced spot-checks. It is far too easy to present a false picture to families and external care managers. The programme made harrowing watching but, as well as exposing evil, it raises important questions about how we care for our most vulnerable adults.