Saturday, 12 November 2011


Did anyone see the C4 documentary about children on antipsychotic drugs?
I’m so pleased this scandal is being highlighted. There have been several reports about over-use of antipsychotics in elderly dementia patients but not in children or people with learning disabilities. I blogged about this issue last October:
The story about the little boy on the C4 programme sent chills down my spine. He banged his head against hard surfaces and lay on the floor kicking & screaming – just like Chrissy. Antipsychotics were eventually prescribed when he was five but had no benefit. He was then seen by Professor Chris Oliver who suspected he had reflux (heartburn) but was unable to express physical pain due to his autism. When his reflux was treated his behaviour & self-injurious behaviours improved significantly.

Many children with 1q21.1 microdeletion have been diagnosed with reflux as babies. When I remember how Chrissy used to arch her back, and scream for ages in infancy, then head-bang as a toddler, I wonder if she had undiagnosed reflux. My blood still boils at how I was fobbed off when I sought medical help. I was convinced my child was suffering and in pain but these behaviours, & Chrissy’s prolific vomiting, were dismissed as being ‘normal’ for babies & I was treated as an over-anxious first-time mum.

After seeing the programme, I contacted Chrissy’s doctors & asked them to check for reflux again (sure I’ve done this before!), as it would be helpful to rule it out as a contributing factor in her self-injurious outbursts even now. It may be that they started off as a reaction to pain then became entrenched - but causes are probably more varied & complex. Explosive outbursts, sensory integration issues & poor impulse control are also part of the chromosome disorder. I would also like to discuss the plan for reviewing Quetiapine, an antipsychotic Chrissy is taking now. I am eager to see how she is on a gradual reduction programme as surely there should be good justification for her to be on an antipsychotic? I’m not aware of any, & it’s interesting that the investigation suggests there's no evidence that antipsychotics help self-injurious behaviour. Also, more chillingly, no one knows what harm they do over time – particularly to the developing brain of a child. I’ve seen how they affect every part of the body and have frequently expressed my deep unease at their effects on Chrissy. She was prescribed antipsychotics at 10 and different ones were tried until she was 14 and in such a state that she ended up in hospital where her whole medication regime was overhauled. When she had the platelet reaction six years ago she was put back on antipsychotics – newer ones that allegedly cause less side-effects – but I remain unconvinced that the risk-benefit balance is in Chrissy’s favour.

Here’s a list of the side-effects of Risperidone, the antipsychotic Chrissy was on prior to Quetiapine, as reported to her learning disability psychiatrist in 2008:
• Parkinsonian tremor in right hand, and, more mildly, tremor in head and mouth.
• Noisy breathing, even when sitting quietly.
• Frequent leaning to one side – Pisa Syndrome?
• Poor balance.
• Decreased fine motor co-ordination – problems eating neatly, particularly using a knife and fork, which Chrissy always used to be able to manage with no problems.
• Decreased gross motor co-ordination. Problems climbing into and out of unfamiliar things, like fairground rides, which she would have once managed, albeit with support.
• Increased agitation and shorter concentration span.
• Drooling from mouth. (Non-existent normally)
• Frequent urination and loss of bladder control.
• Reduced cognitive ability – less aware of surroundings and takes more time to process information.
• Weight gain and obsession with eating.

My concerns were initially dismissed, ludicrously, as being ‘part of Chrissy’ but eventually the psychiatrist agreed to reduce the antipsychotic dose, which diminished the side-effects. However, without the doping effect, many self-injurious, challenging behaviours returned, hence the change to Quetiapine. We haven’t seen the same side-effects, just different & even scarier ones. The worst of them settled over time when the dose was tweaked but Chrissy is now obese & still has self-injurious outbursts.

Of course, there are no drugs to ‘cure’ conditions like autism. You can adapt surroundings and use strategies to help someone cope better & improve their functioning. However in certain circumstances medication is necessary, not as a chemical cosh to make carers’ jobs easier, but to improve quality of life by treating symptoms such as extreme anxiety or a compulsion to self-injure. I don’t know why antipsychotics are so widely used in place of other medications to treat such symptoms. Have psychiatrists become too complacent? Is it a case of better the devil you know? Any medications that affect brain functioning in the way antipsychotics do should only be prescribed as a last resort and with strong justification. They should also be subject to careful monitoring.

Surely these are basic medical principles - so what's going wrong?

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  1. My 10 year old son with aspergers was put on Risperadone after a meltdown so serious that he was kept in overnight at the local children's hospital. His behaviour has calmed noticeably now and he is not nearly so angry. i don't see any of these side effects so far TG

  2. That's good TG. Chrissy has a history of adverse reactions to medication & antipsychotics don't suit her. She is also on anti- epilepsy meds, which complicates the picture. She did so well on naltrxone. I live in hope that she will find that stability again without the life-threatening side-effects.

  3. Aidan had a lot of adverse side effects specifically to anti psychotic medications, stimulants or any med that affects the brain. I am wondering if the intolerance to these meds could possibly be contributing to the deletion? I would DEFINETLY have them check for reflux again as all THREE of my kids have this with the deletion and it has not been outgrown! Is ABA therapy used in the UK? It would be really beneficial to Chrissy!

  4. Thanks BusyMommy. I will definitely pursue the reflux checks. I've just looked up ABA therapy & I'm not familiar with it. However, Chrissy has had lots of behavioural analysis & intervention over the years - unfortunately, it came very late, when she was about 10.