ADHD med increase = devil child from 5pm... normal?

[PinkSweetpeas]

Our 11 year old has recently gone from 10mg to 15mg of Medikinet XL.

Great. He's been a star during the day, school day he's been hardworking and an 'angel child' (big difference!). He's polite and 'himself' when he's medicated.

Jesus wept though, once the medication wears off though (around 5pm) he is AWFUL! Not just 'the benefits of the medication make us forget how bad he was before' but genuinely horrific. We didn't see such a big difference in behaviour on 10mg.

Antagonistic, defiant, aggressive, sweary, violent even; all with a manic laugh... just hideous. He can be all these things usually but it's like in concentrated extra-horrific form. Like, his worst hour ever in the past, every evening.

We've always said, 'as long as he's doing ok at school we can cope with after school' but actually we aren't coping too well. We've discussed later top up doses with his ADHD nurse but at the same time sleep is another major issue and I'm wary of a later dose having a knock on effect on sleep and then creating more issues than we solve.

Can anyone relate or offer advice?

Is the XL an 8 hour or a 12 hour dose?
If 8 hour, a tiny top up of short acting at 3pm might be the answer. We had this when first on school time only meds.
We have now moved to a top up after lunch with long acting - I have to say we'd LOVE it if he was good at school but we don't have the crash after school any more.

Thanks @drspouse. It's an 8 hour dose I think. Sounds like a small top up dose might be worth a try.

We are very lucky that the meds seem to be helping him so much at school and if there has to be a trade off I'd always rather deal with difficult behaviour at home! I suspect it takes a lot of effort for him to maintain 'being good' while he's there too which probably compounds things when the meds do wear off! So tricky isn't it.

I was feeling totally broken with it all when I posted last night but this morning he's been so apologetic and thoughtful, things don't seem so bad. Lighter evenings are around the corner which might help too... all being stuck in the house just magnifies everything!

Sorry you’re going through this OP, it must be so frustrating since your DS had been settled on the lower dose. It’s so upsetting for everyone and totally exhausting, and yes being stuck in the house all day makes things so much worse. I really sympathise. How long has he been taking the higher dose for? My DS had a terrible evening reaction to methylphenidate (similar to the one you describe) when he started taking it, but it improved significantly after a few days. Everything I have read says that a top-up dose of a short acting stimulant in the late afternoon does not affect sleep - I’m not sure anyone would do it otherwise?! So I would say it’s worth a try if evenings are so bad. Has your DS been prescribed melatonin for sleep? Good luck!

Thank you @Bluebutterfly36, it's nice to speak with people who 'get it'.

The dose was increased over the Christmas holidays so this has been going on a while. Was a particularly bad evening when I posted and just felt totally unmanageable!

Yes, he's on melatonin which is a godsend. We actually stopped the melatonin over Christmas as we felt it wasn't working as well as it had been and a break might help. OMG we lasted about 3 days! Fast descent into a non-sleeping overtired angry ball of rage! We decided perhaps it was working ok after all 😅

Oh no! 😫 Lack of sleep just makes everything so much wo

... so much worse...Also low blood sugar as I’m finding to my cost at the moment. DS has just started Elvanse and is unable to eat anything until late afternoon. If I can persuade him to have even a small fizzy drink before then it immediately lifts his mood, but he really struggles. It’s so frustrating as it really affects his mood and behaviour.

I was thinking another possible option for your DS (instead of a small dose of quick release meds) might be to keep him on the 10mg Medikinet but add a non-stimulant med - it is possible this could boost the school time concentration but not the anger/aggression. Maybe worth discussing with his prThe non-stimulants tend to help with these aspects I think - I’ve been reading a lot online about combining meds for this exact problem. The only other option I suppose is to move to another long acting methylphenidate med to see if he responds better with a lower dose. This book is quite interesting: Straight Talk about Psychiatric Medications for Kids by Timothy Wilens. It goes through all the meds and what the options are for trying to minimise side effects. They do it in Kindle format.

That sounds really tricky with the food. Thankfully we don't have major appetite issues during the day; DS has another medical condition which can make him v unwell if he doesn't eat regularly so it's a constant effort to keep him topped up with food as it is. I don't think growth spurts help either- perfect storm!

I will definitely check out that book, appreciate the recommendation. Sometimes researching such things helps me feel more in control even when I'm not

I completely agree! Best of luck!

You too, and thank you for your kind and understanding replies

You could try a longer acting medication. Delmosart comes in 18mg and its over 12 hours - we didn't see as much of a wear off than with medikinet.

evening exercise can also help

dd is on the 10mg, and when we move to 15 we get what you describe. We have an afternoon top up even with the 10 mg and it does help, but I find she is still hyper in the evening.

It is so hard! As the evening is when you really need things to be relaxed. The weather has been awful here too and she has been stuck in the house, they really need a lot more activity and stimulation.

DD has been struggling with being oppositional and moody as well even on the meds, I am going to ring her consultant and ask about those non stimulants that can help with mood. I don't like the idea of her being on a lot of tablets but we are at breaking point and she is not coping well with this lockdown anymore.

Good luck with your ds, ask for a top up and see how it goes. We were first given the instant release 5mg top up, but found that she didn't react well to it, so the Dr reluctantly tried 5mg XL for the afternoon and it worked better.

How old is your DD jan?

10

I'm not sure if we might look into these for DS. The paeds consultant said his ADHD meds wouldn't be helping his anxiety (he has so much refusal, basically at least half if not much more is anxiety related rather than simply being defiant e.g. not playing with other children at school, refusing to do PE when on the occasions he does it, he likes it) so we've reduced them a bit and his appetite is now better (especially in the evenings) but no major change to behaviour.

That does sound like it is anxiety related. DD's defiant traits usually get better on a higher dose of stimulants, but it zones her out too much so we keep her on a low dose. I hope you find something to help

Reading with interest as we’re in the same boat on 10ml although blood sugar a major issue here so having food at the ready helps a bit...

Thanks jan, we are doing CBT with an online therapist (mainly us doing it but DS has chatted to her a couple of times) but it's early days.

We are going through exactly all of what you are describing. My DS was diagnosed with ADHD 2 years ago and we have tried to avoid the meds, but then we saw that his lack of concentration was affecting his schoolwork and then his self esteem. We have just started (day 3) on Equasym XL 10mg for a week and then it is being increased to 20mg next week. We have noticed no discernible difference in his focus and concentration (yet) but come 5pm, he turns into this hysterical, angry mess. Lots of shouting and slamming of doors, pushing us and being a general PITA. Much like the OP, I feel a bit depressed that this is our future. I just hope it settles down. FWIW, I am inclined to feel that lockdown has a lot to do with it: lack of fresh air and exercise, lack of socialisation (he is an only child), too much screen time (despite our best efforts - ALL schoolwork is online) and the same old, same old, day in and day out. Hope, OP, that you start to see positive changes. Glad I chanced upon this. It's not just us. Thank you.

PS He is 10.

I would really consider a top up short acting dose.
We actually used the short acting after school for about a year and now we have a top up after lunch instead.
He doesn't eat lunch but he has an extra meal after tea.

I feel a bit depressed that this is our future @Clippedwings it shouldn’t be! It sounds like your DS has bad side effects and none of the good effects. There are many ADHD medications and there seems to be no logic as to which will or won’t suit a child. Your DS’s doctor will adjust or change the meds if they are not working properly. Side effects often do settle down after a few days and I completely agree lockdown makes things so much more difficult.

I agree about the lockdown. I know all kids are really struggling but I think it is especially hard for adhd kids because they need so much stimulation don't they. All their usual activities are all stopped. It's very very hard. This lockdown is so much harder with motivation for school work too, it just isn't there and we are all fed up with it.
drspouse, would be very interested to hear what you gain from CBT and how it helps, if you don't mind!! After you have done a few weeks

I am following a couple of pieces of advice in this book:

www.psychiatryredefined.org/finally-focused-book/

this is only a couple of pounds on the kindle, I just bought it, thanks