The Bitterest Pill

2004. I can remember it like it was yesterday. A six monthly check up with the paediatrician. We didn’t know it at the time, but he didn’t have any experience with learning disability. I guess he had a free slot when Steven was initially referred. It always felt odd that Steven was the only teenager in a waiting room full of toddlers. That doctor was an arrogant sod. We had a great social worker at the time, who dropped in to see us straight from an MDT meeting. He was shocked because the paediatrician had just announced to a packed room that in his expert opinion, Steven would spend all his adult life in a locked secure hospital. He’d only met Steven once when he delivered that pearl of wisdom. I think he sowed a seed at that meeting that other professionals watered over the next six years.

Steven was due to have some serious dental work and we were concerned how he (and we) would manage it. Casually, the doctor wrote out a prescription for Epilim Chrono and reassured us that he would help reduce Steven’s anxiety. Not just for the surgery, but for more general, daily situations. I am ashamed that I just went along with it. I didn’t even Google Epilim when I got home. Steven knew. Just before we left, he threw a carton of apple juice over the doctor. It was obvious that there was mutual contempt between patient and doctor. I kept quiet.

18 years later, today has been the first day that Steven hasn’t taken Epilim since we collected that first prescription. Over the next 6 years, the dose was increased a few times and Steven came home from his year at the ATU with a serious Rhispirodone habit. And in that 6 years, his weight had doubled from the 13 stone he weighed at the paediatrician’s assessment session. The link was obvious, but we couldn’t get any medical professional to acknowledge that link. Far easier to write a statement for Justice Jackson which included the lie, “Mr Neary does not set or adhere to strict food boundaries.” I’ve lost count of how many dieticians we’ve met over the years, suffice to say there’s been enough to form a Blazing Squad tribute band. Even more difficult was finding a psychiatrist who would consider even a minimal reduction in the doses of the Epilim and the anti psychotic.

I wouldn’t say that I was passive throughout this time, but I could have been a lot more challenging. By 2015, Steven was now experiencing physical issues, mainly due to the huge weight he was carrying. One Sunday morning, after weeks of boomeranging between the GP and A & E, I took Steven to a private clinic just off Baker Street. We were there the whole day as the consultant did scans, blood tests, you name it, he did it. His final verdict was that without some serious weight loss, Steven would soon be dead. His liver, in particular, had been badly affected. He was confident that the weight could be reversed. It was incredibly moving, after so many years of apathy, to meet someone who combined expertise, wisdom and humanity. Needless to say, neither the GP, nor the psychiatrist would initially agree to reducing the medication. In fact, one locum GP was furious that I’d consulted a private service. Out of desperation I tracked down the court appointed psychiatrist who had given evidence at Steven’s hearing, four years earlier. Ethically, he couldnt intervene, but his advice, and his trust in me and Steven was invaluable.

Along with the support workers, I drew up a reduction plan. Out of the two tablets, it was obvious that the Rhispirodone was the most problematic. Steven was on 4 tablets daily at the time, so we devised a plan where one tablet was eliminated every three months. The impact was immediately transformative. Steven lost 8 stone in weight in as many months. And even better, there was no deterioration in his mental health. On the contrary, a sharpness came back that had long since been lost in the pharmaceutical fog. Approximately one year after our Baker Street excursion, Steven was off the Rhispirodone completely. The local psychiatrist insisted that we kept a stock to use as a PRN. That has been particularly shocking. We’ve only used them as a PRN a handful of times and each time, Steven has taken immediately to his bed and slept for hours; his speech becomes slurred and his usual orderly brain falls into chaos. Steven has worked this out and if he is in a meltdown, he has enough wherewithal to tearfully insist that he’s not given a PRN.

At the start of the Covid lockdown, we started a similar reduction plan with the Epilim. Inevitably, lockdown brought many changes to Steven’s normal routines, so it seemed prudent to take the reduction more slowly than before. What we forgot to factor in was the lack of exercise during lockdown, so Steven has put on quite a bit of weight since 2020. But he’s done it once; he can succeed again. He was starting from a much healthier position, despite the weight gain.

Yesterday was the last day of Epilim. Today, for the first time in 18 years, Steven didn’t have a bowl of tablets before his breakfast. It feels like an epic day. Steven has carried on as normal: a Style Council cd this morning and a Mr Motivator DVD this afternoon. We missed a trick in not getting him to exercise along with Mr M, but there’s plenty of time for that.

Here’s the shocking note to end on. I can’t honestly put my hand on my heart and state that the two different medications had any positive benefit on Steven’s moods or mental health at all. As I’ve explained there has been a detrimental physical impact, but the tablets were meant to serve him favourably. He still has the occassional meltdown, but they are shorter in duration and with the wisdom of age, Steven has a greater understanding of what is happening to him. It would be more truthful to say that he has got “better” as the medication has been cut down. The most alarming thing is the thought that the medication has had absolutely no positive impact whatsoever: the fact that Steven is less anxious in the world is down to maturity and confidence.

Despite the joy of this landmark day, that is a bitter pill to swallow. (The Jam, not The Style Council).

1 thought on “The Bitterest Pill”

  1. It is wonderful that Steven is drug free. How I envy you but at the same time so glad for Steven.

    Your experience with the medical world mirrors my own struggle with psychiatrists too arrogant to listen to any other views than their own. What annoys me the most is that you have parented and monitered Steven’s struggles when taking these pills on a daily basis and they only see Steven for about fifteen minutes every so often. How on earth can they expect to know more than you on the impact these drugs have on Steven?

    My husband and I had been told that ‘I can take this further’ by a psychiatrist who wanted to use a drug we refused to give my son. Fortunately several years later NICE recommended that the drug should not be given to people with LD or the elderly. We were vindicated. Any apology from this man? Never!

    Thank goodness not all psychiatrists gaslight the parents who deem to ask questions about their loved ones medication. It would be wonderful if psychiatrists and doctors looked on parent/carers as allies in the care of their loved ones and not enemies.

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