It’s hard to avoid getting your hopes up when it comes to ADHD meds. I couldn’t discount all the positive comments from parents on my support groups: “Absolute game changer for us!”; “Completely turned his life around,” “Just wished we’d started them earlier”.
Seeing C’s QB test (with a total symptom score of 98) gave me an indication of what her brain must be like at school. Her activity graph (the ‘attention and impulse indicator’) resembled a dancing splat of paint when compared to the neat speck of the non-ADHD sample. Imagine having that neurological setup and sitting through Michael Gove’s tedious curriculum day in, day out*
Year 5 had been a horror show already, and we were still in September. We had trepidations about meds, knowing that emotional dysregulation was C’s worst ADHD symptom. But surely something that gave improved focus would improve her experience at school and subsequently cause less explosions back at home. Obviously, I expected trial and error for a while. But hopefully, down the line, I would be one of those parents looking back with relief that we had given her the support she needed.
C was on the waiting list for CAMHS titration (that shit show is another story) so we went to a private provider. The monthly cost was £200 + the prescription (around £40.) It was a significant outgoing for us, but certainly worth it for 6 months (at which point, all being well, you are only paying for the prescription.)
After a video call with a titration nurse, we agreed to start on Equasym, mainly due to its release profile: 30% instant release, 70% across the day. In theory this meant the meds wore off at a slower rate, rather than experiencing a big rush and subsequent crash.
Rebound
10mg, I was told, would have no positive effect but was the starting point for C to begin tolerating the drug. As expected, we noticed no difference in C that first day – until around 9.45 at night. I was attempting to settle her to sleep, but she became violent and extremely distressed. She began shouting how much she hated her life. It was like a highlight reel of her worst ADHD behaviours, on speed. Quite literally: she was gurning and had that kind of rush you see on people on MDMA. It was horrific to see in a 9-year-old.
The episode lasted no longer than 45 minutes, but she didn’t sleep until gone 11pm which was at least an hour later than normal.
I was shaken. I began googling side effects of the drug and came across the concept of ADHD Medication Rebound. I asked parents on support groups about their experience. C had a sleepover the next day: how could I send her to her friend’s expecting a disturbing episode to take place at some point in the night?
Most parents assured me the severity of the rebound effect would reduce: it would be “rough for a couple of weeks” as her body adjusted. I spoke to family over the weekend. I was assured I was being too hasty in giving up straight away. We decided to re-start on Monday and clear her social diary to allow for monitoring and take the pressure off.
“Maybe I don’t hate my life”
We continued the titration, and whilst the rebound effect was still evident, it was not as severe as the first night for some time. When C started the 20mg, I suddenly noticed the positives. We chose weekends for meds increases to monitor her more closely.
The Saturday morning she first went on 20mg, she became incredibly chatty after 30 minutes. I recall her stroking our kitten delightedly, discussing how much she loved her and reflecting beatifically: “maybe I don’t hate my life.”
In the car home from a shopping trip, she was ebullient: “I randomly feel so happy today!” C began playing with Lego. She was able to follow the instructions and immerse herself in the process, instead of getting everything out of the box and abandoning it in frustration within 10 minutes.
She was delighted about this: “I’ve never been able to do lego before!” Which was heartbreaking in a different way.
We continued with 20mg for a few weeks. One of the best aspects of the meds was that getting ready for school was no longer a fraught, emotionally scarring battlefield. Within 30 minutes of taking Equasym, C was able to just get her clothes on and get ready with limited resistance. I would dash down the stairs to ensure she took a pill by 7.30, to ensure by 8 she was regulated enough to be ready for school.
Meanwhile, her teacher didn’t report significant changes in her attention or behavior. But hey, at least she was there, willingly. I assumed for the full impact we’d need to go up to her recommended 30mg dose.
UNRAVELLING
I can’t remember transitioning up to 30mg; it was within a few months. But over these months, every night started to involve hours listening to how awful she felt, how terrible life was: school, friendships.
I’d had great hopes the medication would regulate C and subsequently improve friendship dramas – but the opposite seemed to be happening. She was full irritation with her friends, recounted running away and crying during playtime “but no one cares!” I was desperate to help but nothing I did alleviated her mood. She started needing me with her to fall asleep.
One weekend we decided to give her a break. That day was even worse in terms of mood than the weeks prior. We cancelled plans.
This is one of the fallacies re ADHD medication: that once they wear off, you’re right back to your baseline. Certainly it’s true compared to other drugs, but ask any parent who gives their child a meds break in the holidays: the first few days are often pretty tough.
Things began escalating: she’d have meltdowns after school that involved extreme anger and running away from us. I noticed at weekends it was always around 2pm she descended into either defiance or abject misery. She started to question why she should be alive.
The final straw came one weekend when C was due to go to a friend’s party and we’d told her she wasn’t allowed to bring something with her (that was wildly inappropriate.) C lost control. She started smashing up plant pots in the garden; I recall her on the floor, biting her own hands. By the time the outburst had worn off, she was in floods of tears and we were feeling traumatised. She missed the birthday party.
WEANING OFF
That was enough for me. I titrated her slowly back down over the next few days and gave her a day off school. Looking back, I wished I’d had more support throughout the process and been more proactive. Well, this applies to my entire life as an SEN mum. We had one video call when they suggested eating protein to mitigate the comedown, which was helpful but didn’t really touch the sides of what was going on. The clinic was responsive to emails, but I felt totally alone. Our titration meetings were once a month, remotely.
If you begin this, I would urge you to be clear on how closely monitored your child will be throughout the process. Not many children will have reactions like C but there is an enormous amount of tweaking involved to get things optimum. Of course, to an extent you have to let things play out, but it certainly would have helped to have more input.
We may revisit it in the future. There’s still plenty of options out there. But in the meantime, we decided to focus on better sleep and maybe some therapy. We consulted psychiatrist about C’s low moods and metldowns. In the second, parent-only session, she told us: “It’s highly like C is autistic.”
*Michael Gove’s curriculum has pushed many a borderline child onto the SEN register is a hill I’ll die on