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!

@TheWitchingHour try to reassure dd that the gist two or three days can be very tricky and then things can settle. We were told to give it a week to see if things were real side effects or just about starting the meds. We had emotional swings, tears, migraines and exhaustion in our first week

Could she have a duvet day or two at home while the meds are settling down?

@TheWitchingHour if that come down feeling lasts more than a few days it would be worth telling the consultant. Sometimes they give a little top up dose at lunchtime that helps the dose taper more slowly. That completely solved the problem for ds. We started the top up a week in.

@WesternEasterner good luck today! I hope it goes well!

@OnePlusOneEquals that sounds like great news with the top up! It’s had an amazing effect for ds so hopefully will be the same for you guys

The week is going ok here and my main focus at the moment is just trying to keep ds’s weight going up. I need him to put on a few more kg and slowly but surely (very slowly) it’s still going up.

Thanks so much for the advice everyone, it’s a whole new world with diagnosis and meds isn’t it, a lot of information and a lot to get used to etc. The psychiatrist is calling on Friday so will mention the anger, as it’s really quite bad, the hyper come downs subsided but the anger - I’ve never seen her that angry before.

Hi everyone,

Just searching for a little guidance. We've just upped DS's Medikinet XL on Saturday to the max dose recommended by his paediatrician (20mg). Other times we have increased, the only noticeable negative side effect was being more teary and emotional in the afternoons for the first few days. There have been some positives; for example in his karate class for example he was able to sit straight and listen solidly to instructions for around 10 minutes. Previously, he would have been lolling on the ground, turning around, unable to keep still. School has said that since increasing to 20mg, they have concerns about his mental health, they say he is behaving quite paranoid (thinking people are staring at him) and that he has developed an irrational fear of insects. The fear of insects did start before he took the ADHD meds, but it seems to have been heightened in the last few days. He's also been quite self-deprecating, saying that he has 'no friends at school' (this is unfortunately true, so I'm not sure if the medication is just making him more aware of social norms) and even that he wants to move school.

The paranoia and irrational fears have made me really concerned about continuing with the 20mg. Has anyone had similar and found these side effects have subsided? Is it worth dropping back down to 15mg? I wish I could keep him off school for a while to monitor him at home properly. His paediatrician thinks it's worth continuing with the 20mg for a little while longer at least.

@Plro I’m so sorry to hear about this, which sounds very stressful. We’ve definitely found ds to be temporarily more anxious when medication is increased and things like worrying about friends became very prominent. In case it’s at all helpful being on a higher dose has helped him socially longer term as he’s less manic and easier to be around.

Is your ds dual diagnosed with ASD? I’m only asking because My ds has ASD and he has various phobias including of insects actually and can spiral into unrealistic anxiety loops very quickly. He sees a psychotherapist and he has said that this is very characteristic of ASD - that children go straight from “that bull in the field looks a bit scary to it’s going to charge the fence and attack me on the way to school’. If there are autistic traits in the mix that might explain some of what you are seeing but I would definitely of course communicate all of this to your consultant and ask advice. I really hope it all passes soon for you.

I assume there’s no particular time of day this happens?

@TheWitchingHour I hope your dd is ok today and that your conversation with the psychiatrist goes well. You will have to keep us posted.

@Plro I would echo what @MissHavershamReturns says and go by the advice of your paediatrician. We haven't experienced any issues with anything like this ourselves but our paed did warn us it was possible, especially with children with ASD traits - she said it can bring these traits to the forefront as the ADHD symptoms go. That said, they also told us anxiety and paranoia was a listed side effect. Personally I would continue for maybe 7-10 days max but from reading this thread, this seems like enough time to allow 'teething problems' to subside. I would absolutely have him off school if you can, just give him some r&r.

@TheWitchingHour let us know how it goes - this is a great space here for talking things through.

My own DS had a great day yesterday on his new 20mg dose. Still no side effects at all (other than the obvious lack of appetite) He has been very very lucky so far. Will see how the next few days pan out but so far so good. It also lasted longer, we got another hour or so out of it which got us to the end of the school day.

This does sound really tricky and upsetting to deal with hope you are all ok. Are you due a half term soon?

My DS was really out of shape for a bit when we moved up to what I think we'll stick with now which is the 30s.

He didn't have many friends before becuse he was so quick to anger and sadly I think a bit annoying but that's really improved now - you're right I think in that if he's feeling a bit calmer he might be noticing this more and I really hope it improves - I've noticed my DS is complaining far less about other kids and seeming just to generally get on with people better

He did have a few tough weeks seeming down, quiet sad pale and actually a bit depressed although he said he was fine. I do think it's a matter of giving a little time but I'd definitely chat to the consultant if your worried.

I am going to only adjust doses in school hols after my experiences I think

Hi could you let me know what the muli vit is please?

@MissHavershamReturns @HauntedPencil @WesternEasterner

I sent DS to school today on just 15mg, I was so concerned by what school had said. It's difficult to be able to build an accurate picture whilst they are at school, I'm only seeing him medicated 2 days out of 7.

He has got a dual diagnosis of ASD; but he is not an anxious boy usually, perhaps because it is masked by his over the top hyperactivity and busyness. So to hear from the school that he is experiencing such high levels of paranoia / anxiety is quite disconcerting. I also thought that perhaps the medication is giving him enough headspace to calm down and actually think; therefore he's recognising the fact he doesn't have any friends and it's more of an issue because he hasn't got such a full mind to distract him. It's also perfectly natural to feel upset because you don't have any friends. I just don't think he noticed as much before. He's also very clever and doesn't usually have issues with his school work, but again school has said he was so anxious yesterday that he wasn't able to do a piece of work.

We've got school holidays the week after next, but I'm not sure what to do in the meantime. I'd like to keep him off and continue on 20mg. It would give him a bit of time to relax and destress (I'll home school). But I'm not sure school will agree, I get the impression that they want DS to stop medication altogether, although I have explained that you need to give it time to settle any side effects. His attendance also isn't great this year, we've had a few sick days and a holiday.

@Plro I’ve sent you something by pm - a link you may find useful. Your plans sound eminently sensible to me. Sending lots of good vibes for things to settle

sadly that could be that your daughter falls in the small percentage with too much dopamine

this means the medication keeps keeps her already large amount of dopamine in her brain for longer instead of breaking down , and too much of it causes anger

about 80% if kids have the opposite problem, either little dopamine or neurotransmitter breaks down too quickly so the meds aim to keep in the brain area for longer

this meds don’t work in this case , hence certain doctors advise for dna test (it tells them what meds to use)

fingers crossed it’s just a temporary reaction

if not they ll just switch to different drug

good luck

@MissHavershamReturns Thank you so much, I'll respond and have a proper read later 🙂

Interestingly, school said he was much happier and positive today on the 15mg. I'm now thinking I might keep him on the 15mg until half term, then do the increase to 20mg in the 9 days he has off? Seems like a bit of a back step, but maybe spending a little longer on 15mg will be beneficial. We can also monitor how he's responding to the 20mg much better if he's at home. We've been increasing the dosage in weekly increments, maybe it needs to be a little more spaced out...

I think that sounds like a good idea actually - you are on hand then to deal with any issues and see what reaction he might have or you might find fingers crossed it's fine and it might have been just coincidental. Glad he had a better day.

Everyone's different but ine DS had a bit of trouble going up to 30 mG but I could see it was necessary as the 20 just didn't seem right - he had an angry shouty evening and one really bad anger episode at school, so I jsut think I'll stick to changing ar holdiays now.

Could be that 20mg is too much for him (paranoia is a side effect in high doses)

good idea to give it a chance for a while x

@Plro keep us posted on how things are and what your consultant advises. We were warned by a friend that ASD traits are often more apparent once the meds have smoothed out the ADHD hyperness. That has definitely been true for ds but overall meds have been a real win for him so I will keep fingers crossed you can find a dose that works!

We do all increments in the holidays and we were told by our consultant that with dual dx kids the aim is always to start low and move up really slowly. That did mean it took 6 months to titrate from 10 to 30 and no real did effects until we got to appetite issues at 30. BUT the downside of that was that his behaviour improvements were only seen at school six months later and he had to continue to live through those very difficult times he was having at school. So pluses and minuses of slow titration.

So DS has been on 20mg for 5 days now. The first two days were totally fine. He's had no side effects at all that you might expect, no headaches or stomach aches.

But.... It's like it's not working as well as the 10mg? Some days it's felt like they haven't had an effect at all? He seems more flitty and anxious, like he was before meds and doesn't seem any more focused. He's still less impulsive and finds it easier to sit still but his focus is still poor.

Is it possible that it's too high a dose? Or could it be something else? Maybe it's not high enough? It's certainly not better than the 10mg he was having! I pictured when the dose was too high we'd have big side effects but I'm now not totally sure. How did you guys know if it was too much?

You can’t tell until after at least a week in my experience @WesternEasterner I find it takes at least a week for each dose increase to settle. Keeping fingers crossed you see improvements soon!

We didn’t really see major improvements in focus until we went up to 30 but the right dose is going to differ a lot from child to child I’m sure. I personally obsessed about all increases because I wasn’t secure in my decision to try the meds - I don’t know if you feel like this at all @WesternEasterner? it’s such a journey!

Took us a few weeks to settle but before he did it was really hard to judge.

When DS had top ups and it was possibly too high he was zoned out quiet etc not himself not chatty - think the meds game for us is trying to increase that focus and his enjoyment of school balanced with him being his usual fun self

Thanks guys, that's helpful.

I thought when it settled we'd have the expected side effects - headaches, anxiety, anger etc but it's really odd because it's almost like he's just not taken them!?! Yesterday my husband and I searched the floor to double check he hadn't dropped it and just thought he'd taken it, but he swears he did! I don't think he'd like either as he never makes a fuss and says it makes him feel loads better.

Sunday was similar. He was just very very flitty. Almost like when you walk in somewhere with loads going on and your brain can't compute it. That sort of wide eyed 'where do I even start' expression on his face all day.

We will definitely carry on but I am supposed to email the consultant at the end of next week and let her know how we are doing before potentially going up to 30. Tempted to stay on the 20mg a bit longer as I'm not sure we'll really be able to say how it's been after such a short amount of time. I'm speaking to his teacher on Thursday but he'll only be basing his judgment on 4 days worth which doesn't seem enough given his main issues are at school.

With the 10 it was an immediate improvement from the moment the first pill kicked in. Less clear with this.