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Less Massive

December 15, 2016

I’m going to repeat an old story here.

For two reasons. Firstly, because it feels timely and appropriate in the week the CQC published their Deaths Review. Secondly, because as Steven would put it, “it’s big massive news”.

In January 2014, I decided to use a chunk of Steven’s compensation money and took him to a private health clinic up near Bakers Street. For about six weeks he had been howling in agony, clutching his side and begging anyone to take the pain away. For six weeks we were shunted backwards and forwards between the GP and A&E as neither seemed prepared to take his agony seriously. A locum GP even tried to pass it off as ” imagined pain” as Steven was bent double on his floor. A referral was made for an ultra sound but nothing happened.

Imagine the shock when the doctor at the clinic, after doing a full body scan, announced that Steven’s liver was failing. His body weight was producing a fatty liver and could prove fatal. The only smidgen of relief from the consultation came when the doctor agreed that the medication was probably the primary cause.

In 2006, Steven weighed 13 stone. A paediatrician put him on Epilem Chrono to help with his anxiety. In 2008, after transition to adult services, the psychiatrist put him on risperidone. A serious anti psychotic to manage the existential crisis of becoming an adult. By the time Steven came out of the ATU, the dosage of risperidone had been tripled.

When Steven was weighed at the private clinic, his weight was 29 stone 2lbs. 16 stone weight gain in 8 years. He was dying. Death by medication. And nobody gave a toss because Steven has a learning disability.

Between 2006 and 2014, I must have seen more dietitians than is possible to see. Kept ring binders of food logs. Spent a fortune in personal trainers. But all along, I knew deep down that the weight gain had little to do with Steven’s food intake. Nobody would believe me. Nobody would acknowledge the glaring link. Even after the liver diagnosis, the GP’s first reaction was another dietitian referral. The psychiatrist was completely disinterested in starting a programme of medication reduction. Out of desperation, one day, I contacted the expert psychiatrist from the High Court case and begged for his help. He did and without the treating psychiatrist’s support we started the long process of weaning Steven off. By this time, he was taking 4mg per day, so a .5 reduction every three months seemed endless.

Almost immediately, the weight started to fall off. Steven last had a risperidone tablet in April. There has been no change to his anxiety or behaviour whatsoever. He got anxious on the medication: he gets anxious off the medication. He’s broken stuff on the medication: he’s broken stuff off the medication. That’s life. That’s autism. That’s being a human being.

Today, the support workers weighed Steven at swimming. He weighs 19 stone. Still too much but a loss of 10 stone in 2 years. We can only hope his liver is repairing itself.

If Steven had died, there wouldn’t have been an investigation. It would have been put down to “natural causes”. All the health and social care professionals in Steven’s team unwilling to make the link between the medication and the weight gain.

On the day back in 2006, the paediatrician prescribed that first tablet, Steven had just thrown a carton of apple juice over him. If I saw him today, I’d find something more lethal to throw at him. His apathy, like several professionals that followed him, nearly led Steven to be a CQC statistic.


From → Social Care

  1. Shirley Buckley permalink

    Mark thank goodness the withdrawal was so slow, whoever recommended it was absolutely right. Epilim is known to play havoc with weight, nothing to do with diet, its a very complex drug. Ive no experience of Risperidone but I think it is fantastic Steven is now off it. Probably it will take a year or two until his metabolism settles down completely

  2. antlerboy permalink

    Mark, thank you for your blogging and the way you use your anger in this form, I think it is an incredibly powerful thing and I really hope it is helping people to see and hear – and even feel – things that need to be learned. I also really hope Steven’s health continues to improve.

  3. Georgina permalink

    Someone I know was prescribed risperidone and her hair started to fall out in large clumps, it messes up your endocrine system. Luckily she had only been on it a couple of weeks and as soon as she stopped it her hair recovered. So glad to hear about weight loss, bit of an issue with my son who loves his food and also is on meds for epilepsy ( which can make you gain weight) we swim everyday and walk a lot which seems to work. Do worry when he gets older that other people won’t be as careful to keep him active as we are.

  4. I have ASD and spent several years on a combo of valproate semisodium and olanzapine, and really empathise with your son. It’s almost impossible not to gain weight on these drugs, and it isn’t made easier by the unbearable hunger they cause. I put on six stone in a year, and got up to twenty stone (I’m 5’5″ and female). When I came off it, I levelled out at 18 stone, and stayed at that weight for several years. I was diagnosed with diabetes in December 2013 (I was 27) – olanzapine causes diabetes both directly and through provoking massive weight gain. I feel resentful and angry, but when I got the diabetes diagnosis I spent a year losing all the weight. Nobody has ever apologised for putting and keeping me on these drugs, and they didn’t even really help at the time! Let’s go and throw apple juice at these bastards together.

    Wishing you and Steven the best for the future

    • It makes you wonder why so many drugs are prescribed – do psychiatrists get financial rewards in return for supplying research information to drug companies?
      I’d say they prescribe and monitor nothing properly – in my experience. It’s as if giving medication is the only treatment they’re capable of. They have nothing else. Drugs are easy for them, as they require no work, compared to other therapies.
      I’m really worried now that my son might have diabetes. Thankyou for sharing.
      They need more than apple juice thrown at them, as we should name and shame.

      • I need to be clearer about my experience, as I don’t think no medication at all is always the right thing.
        I still think some drugs are useful. Risperidone at very low dose helped for years – eased frustration, increased appetite usefully, and increased tolerance to things previously too difficult – and opened doors. But when things went wrong, no other form of help, unless I actively found it, with my limited resources and links, compared to their numerous links and powerful voices.

        But when 2 or 3 drugs are given, increased in dose, then the monitoring – which under parental observation is better – doesn’t have much chance.
        The good psychiatrists will monitor properly and fully involve the parent in decisions, and are the person and parent’s best advocates,
        But the bad ones don’t reply to e-mails, don’t respond in a timely way, but treat things casually, know or share little about blood tests – as the physical side of things seems to be beyond their remit. So unless they are going to monitor physical symptoms, they shouldn’t be allowed to prescribe – as they’re not qualified enough. Those less qualified need guidance, but if psychiatrists can’t give it, and nurses can’t make decisions (or feel qualified to), then is it any wonder people suffer or die?

    • “They didn’t really help at the time” is so chilling. I’d love to hear from anyone for whom the medication did work.

    • It’s great that a person with autism can express things like unbearable hunger. How then does anyone analyse ‘behaviour’ of a person who can’t describe these feelings or symptoms?

  5. Sarah permalink

    I really understand your feelings about this; it is totally unacceptable and alarming and one wonders how many people are receiving such sub-standard care. Health care is my biggest concern when it comes to my 63 year old LD brother who feels pain but is unable to explain where it is. When he shattered his upper arm a locum GP diagnosed him with a kidney stone! My mother always claimed he would receive better treatment from a vet. When he had to stay overnight in hospital unexpectedly, following day surgery, he was treated with complete indifference by the staff and I dread him having any further health problems.

  6. Is Steven being followed up with medical monitoring of his liver function and liver morphology? Even though the liver is the only organ with the ability to regenerate itself, steatohepatitis puts a person at higher risk of various other very unpleasant liver conditions and Steven’s liver recovery really should be tracked.

    Some common drugs that are broken down in the liver shouldn’t be used at all by people with liver problems unless and until that person has been given the all-clear. Paracetamol, for example, is toxic to healthy livers at a relatively low overdose, and could be very dangerous indeed to someone with a damaged liver.

  7. simone aspis permalink

    Good to see another disabled person on this list – I hope the Autistic Rat’s view is ackonowledged and welcomed on this blog. I was thinking whether all of you including the Autistic Rate could sue the medical profession for medical negelience – I also wonder whether formal representation lead by people with ASD and their allies and families to NICE – and see if they can review the worthiness of these drugs with the intent of getting these awful substance off the NICE list – and therefore can not be used by NHS

  8. vanessa barnes permalink

    My son who has autism was also put on this medication, at 17 years old he developed what was said to be ” a very rare side effect” Tardive Diskinasia, no it’s not rare at all and in America people are suing the drugs company after developing it, it’s a cruel debilitating condition as it is damage to the central nervous system, no cure! it can affect any part of your body with no warning. It destroys your life and the lives of the people who love and care for you, the drugs to help then have their side effects so you go around in circles and no one really wants to know

  9. permalink

    Mark, try avocado’s. Excellent for repairing the liver. If Stephen doesn’t like avocado you could try mashing them with a bit of cocoa powder. Tastes like a choc pudding. I have 2 or 3 avocados a week and liver is much better.

  10. Pauline Thomas permalink

    God save us from arrogant doctors. The ones that believe parents are morons and do not know anything. The ones that positively alienate themselves from any input from the caregivers, the very people that have history with their loved ones and know them inside out.

    Vanessa these side effects are not rare as you so remind us. My son has been given so many different drugs to try and cure him of his psychosis (triggered by the reduction of his epilepsy medication or by the clumsy way it was managed?) that he has had statue like stances, lip puckering and leaning over like the Tower of Pisa. All side effects from medication. He has had a weight gain of 3 stone in 5 months. I am hopefully getting him off the antipsychotics and pray that he will come back to his gentle loving self again.

    It breaks my heart to think of the suffering people with learning disabilities have endured while taking these toxic drugs when often they only needed some understanding of their distress and just someone to give them a better lifestyle. Meet their needs and get them motivated. Not easy and the people that are tasked with these cures are often untrained, under valued and under paid.

    What we need is a proper daytime service that gives people a reason to get out of bed in he mornings and an opportunity to make friends and enjoy a social life. Something we once had in abundance but now being pared down to the knuckle. Lorazepam is cheaper than employing staff to interact with people with LD and also has the added bonus of putting them to sleep for hours on end.

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