Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of the benefits of the medication, management of potential side effects, as well as practical tips on how to make taking the medication more straightforward, taking med breaks etc.

This is a really good place to read about recent medication journeys from the supportive crowd on the thread. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

A really good starting place for reading about the range of drugs available and what they do from a Great Ormond Street specialist with over 40 years of experience prescribing the medication is the Parents’ Guide to ADHD Medicines, by Professor Peter Hill, which is available on Amazon. A really accessible, honest and overall reassuring read, which helped me when I was very doubtful back at the start.

The tips on diet from this NHS factsheet on managing reduced appetite in children on the meds are also really useful www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/ My ds was already very skinny when we started the meds, so with hindsight it would have been good to feed him up a bit so there was a bit of a buffer when he became a bit less hungry.

This is thread 2 and thread 1 can be found here: www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38. I’ve posted my path with my dc from starting meds through to the end of titration here, as have many knowledgeable mumsnetters, so it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

So today is the day we have changed from fast release 10mg Medikinet twice a day to 20mg modified release.

He has had some tummy pains when the fast release medicine is wearing off but a drink has helped - hoping that is the same with the modified version. I have also noticed he gets more irritable on the come down.

If this were the case I can see that others have a top up to ease the rebound. Can I ask what time and how many mg is taken?

We have melatonin in case he can't sleep. He does seem able to sleep but takes around 30 minutes to drop off.

I was also wondering about concerta xl and whether that would help with rebound. Do others find they have had rebound with concerta?

@Bertiemcgertie - that’s interesting you are moving to Medikanet modified release. We have been on 15mg in morning and 10mg top up at lunch on modified release and doctor is now suggesting we move to 15mg modified in morning and then 5mg fast release at lunch and 5mg fast release at 3.30 because we struggle with the crashes….the medicine was only working until about 4pm. Concerta never worked for us - even though part of same medicine family….

hels20 the 10mg was fast release at lunch? I suspect we may need to have a 3.30 top-up. He has been noticeably more irritable around 4.30pm with the 10mg fast release at lunch - today will be interesting (I may not be saying that later if it is awful....I will be using other words....!!) But the combo of 5 plus another 5 may be a good solution. A tapering down and hopefully helping those crashes.

My son seems very sensitive to changes in brand. Medikinet seems to have been OK, apart from the tummy pains as the meds work out of his system

We tried a range of ADHD meds two years ago when he was in mainstream (he is now in specialist). It was very clearly the wrong environment. At the time, it was extremely difficult to prise apart what was the ADHD meds and what was being caused by the wrong environment.

Hopefully this time round it will be easier to tell how the meds are working.

We use 20mg Medikinet XL and then a 5mg fast release top at 1pm ish.

We’ve been on equasym XL 20mg for about a year now although the first couple of months was 10mg.
I definitely noticed improvements with overall behaviour and angry outbursts but the last couple of months have been a nightmare. He’s very rude to me a lot of the time and easily annoyed. It’s hard to know if it’s medication, age (11), or just him? As he has always been like this but more frequently lately. Not as bad as pre meds though.
Anybody experienced similar?

We started on 20mg Medikinet XL. Good news is he doesn't seem to be getting the slight tummy aches he got when the fast release was wearing off.

Bad news is he is struggling to get to sleep - and seems to be waking earlier. We have 2 mg melatonin to try. When do you give it? Does it work for med related sleep issues?

I give it at 7pm, DS6 has a bath and by 7:30pm he says he feels heavy, and he's asleep by 8pm.

Thank youandrewgarfieldslaptop I'll try an hour before he usually goes to sleep tonight.

Yes - we give melatonin about 30 to 60 mins before bedtime….

No idea how school is going yet (getting a full report next week). DS has been on medikinet xl for nearly a week. Appetite, sleeping not affected.

However, seems to be getting stomach aches around 1.30 - around 6 hours after taking the tablet. Could this be the med wearing off? Anyone else had this?

Melatonin 2mg, was a bit of a disaster. Made him feel nauseous and dizzy about an hour after taking it. I don't think he needs it but if we were to increase medikinet that would be a concern. Anyone else had issues with melatonin?

No issues like that but he keeps saying it dosent really help, despite being on 10mg a night..

Just here to rant and for sympathy please 😔. It's not even 8:20 and we've had an awful start to the morning. All of our mornings are like this and it's just so bloody wearing.

DS - he's 9 - wakes at 6am (fine). He knows to stay in his room till 7. He's allowed to do whatever he wants in there, Lego, books, fiddle toys, drawing etc. He's incredibly lucky and has a lovely welcoming bedroom with lots to do. But he comes in to us and complains that his clock is a few minutes out. We tell him we'll fix it later and remind him of the 7am rule. He comes in at 6:40, can I go on my iPad. No not till 7, you know the rule. So he runs off, stomping and growling, slams his bedroom door and starts whacking stuff with his soft toys. We ignore this. He slams his door repeatedly and wakes his brother. We get up and tell him off - calmly, no shouting. He growls.

7am comes, he stomps downstairs loudly. I go downstairs and I tell him - nicely but firmly that because of his behaviour this morning, he won't be getting his screen time until later. I tell him he can watch TV. He growls. His brother comes downstairs and he shouts at his brother and says "we can only watch TV because mum is a big fat idiot". I send him to his room. He stomps upstairs and then puts on some socks (?!), stomps downstairs and out of the front door. He slams the door, shouts and growls. He walks down the path to the road, stomps some more and then comes back and hammers on the front door. We let him in. He goes to watch TV (!!!) and I say no, he has to go to his room. He stomps upstairs and slams his door. He starts throwing things around a bit but then settles. I tak him his medication and leave him.

Poor DS2 is cowering in the corner through all of this and you can see he's just thinking 'oh god, already?!?'.

After 30 mins I went in, I knew his meds would be working and he was able to reflect and apologize.

But every single sodding morning is the same. He wakes up like a 20something on speed/coke in the middle of a night out. You can't reason with him, he's absolutely fucking manic. It's EXHAUSTING. Obviously medication stops it in it's tracks but if we don't medicate that day he still improves dramatically from how he is in the morning.

Any tips or sympathy greatly appreciated!!

We have now said a firm absolute no to all screens first thing as I think he's so desperate to get his fix that it makes it worse. But it's not just that as weekday mornings he doesn't get any screen time and he's still the same!!!

Oh @WesternEasterner - you have my sympathies. But you are not alone. This is DS too. We have a rule that he can’t have a screen on a weekday morning unless he is completely ready for school - as he has extra support 3x a week, there is actually only time for him to have his iPad fix for 10 mins on 2 days. But the tantrums most mornings - even though this rule has been in place for ages. You hit the nail on the head about the “fix”. I think my DS is so addicted to screens that he has to have his fix first thing.

he is rude, calls me names, storms out of front door (but doesn’t go out of our front garden). Eventually, when meds kick in he is remorseful.

it is so wearing and awful.

No suggestions but you have my sympathy.

my DS is 8.5…

@Hels20 reassuring to hear yours is exactly the same. It's so hard, because after a long day at school his screens are regulating for him and honestly not a problem. There is a timer of 45 mins and when the timer goes off he switches off and does something else. But the mornings.... Just something else!

I'm wondering now if I should wake him up and take him for a run with some music on. I think he wakes up and immediately seeks out the dopamine?!? He used to jump on our trampoline but we got rid of it when it broke and haven't ever replaced it.

Exercise is a good idea. DS seems to struggle to wake up - he sleeps 11 hours but probably 3 days a week we have to wake him for school - even though he goes to bed and is asleep by 8pm to 8.30pm….

please post again if you ever come up with a solution….ill do the same. I hate our mornings…

We are going to trial two things.

1. Waking him up and taking him for a run.
2. Giving him his meds the moment his eyes open. Even if it means he's unmedicated in the evening, our evenings are fine anyway so 🤷🏼.

We are also going to try Co regulation and talking every morning the moment he wakes up about how he feels and how his body is. So that eventually he can wake up and say 'i feel particularly fucking manic this morning' and know what to do to combat it. Wishful thinking maybe but worth a try? 🤪

Hmmm you remind me of someone’s home on the weekends🤔

I ve concluded that when we ask them to stay in till 7 etc they don’t know what to do with themselves and they get worked up … so the result is what you see when they come out 😆

perhaps rather than giving him a number of things to do in his room, just maybe give him 1-2 things he really fancies so he’s more focused ? I don’t think we ll get away from this one… Adhd is worse in the morning for sure

what I have found though lately which massively helps my weekends is Kalms… for me not DS and for my own sanity , massively recommended 🤓

Hi all, definitely don’t have all the answers to this and our mornings used to also be quite stressful. We now wake ds at the same time daily actually by handing him his screen and he wakes up while watching Netflix or gaming. Not necessarily saying this would be the right approach for other dc, but it really works for him.

DS has been on 20mg medikinet XL for a week, I gave him the weekend off (he only needs meds for school). Found today he was really nauseous.

Will this settle down again? He was getting some tummy pains last week, but the nausea today has left me nervous. Tempted to keep him off school tomorrow, give him a tablet and see how he goes.

On the mornings - we've had to say no to everything as well if he's so obsessive over devices and games. He is allowed to chill and watch telly but only after he's had a breakfast and is dressed.

Sorry meant to be clear, my DS is obsessive. If he thinks he'd have his device he would be earlier and earlier and can be quite strung out when he's got to come off

Hello all. Has anyone had tics as a side effect with their medication?

My DS is 12 and started in 30mg of Medikinet beginning of January. Now his eyes constant tic and bulge. He rolls them and looks side to side. Says he can't help it.
He's already being bullied and this is just going to make things worse? Do they settle down.
I have asked his doctor but would like a parents perspective
Thank you

Did he start at 30mg or work his way up to 30mg?

From what I am gathering from what I know. Some side effects settle others don't. If it's been since the start of Jan then you have given it a fair run.

We have had constant tummy aches since the start of Jan since upping Medikinet. Today he came home from school crying as he had been in so much pain.

My feeling is enough now. We will revert to our lower dose (was only 5mg morning, 5mg afternoon) - because I can't bear to see him like this any longer.

@Bertiemcgertie
Hi. Thank you for your reply.

He was started on 10mg for 2 weeks then 20mg for 2 weeks and then we started the 30 when he went back to school on the 9th.
He's been reduced to 25mg but the ticking was quite bad yesterday and the school called me. So been advised to stop for a week then go back to 20.
He has complained of stomach ache but I didn't think that would be to do with the medication as it's in the evenings when it should have worn off. This is such a minefield