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

45 replies

MissHavershamReturns · 29/05/2026 07:44

Another thread for us to support and encourage each other in medication journeys for our children, right from considering medication for your dc and the earliest days of trying the medication for the first time. Lots of information here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

All information on here is from a parent experience perspective. I am definitely not an hcp, just a mum who is happy to share my family’s ultimately positive experience with the medication, through ups and downs. Others posting here are also just doing so as parent ‘experts by experience’.

That said, the parent knowledge on here is phenomenal and there is help on 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.

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. Link here: https://uk.jkp.com/products/the-parents-guide-to-adhd-medicines

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/

As parents of children with special needs we can sometimes need a bit of support ourselves and I found this book very practical and reassuring on self-care and how to manage SN parenting. The book I wish I had had in the earliest days of having an ND child: Joanna Griffin, ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’. Link here: https://www.waterstones.com/book/day-by-day/joanna-griffin/9781911383536

There have at times been some temporary shortages of ADHD medications and if that ever happens again, a good way to try to find medication locally is the Boots pharmacy stock checker: https://www.boots.com/online/psc/?srsltid=AfmBOoppsRIo5bvorLTCII5ca_6qZvIAbFYvGGCipXV_0RI3US1MNDON . There is a useful guide to different Methylphenidate products here if switching Methylphenidate medications is ever suggested in this situation: https://www.choiceandmedication.org/psychiatryuk/generate/handyfactsheetmethylphenidateswitchinguk.pdf

This is thread 4 and thread 3 can be found here: https://www.mumsnet.com/talk/special_needs/5057892-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others?page=40&reply=152553122

Thread 2 can be found here: https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others.

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 these are good places to read back to see a range of ways that meds journeys can unfold.

Welcome back to everyone who has been on the threads before and please do join us any time if you are considering, starting or on ADHD medication for your child and you will find a very warm welcome here!

Managing low weight and weight loss - Tees Esk and Wear Valley NHS Foundation Trust

Managing low weight and weight loss in children and young people with attention deficit hyperactivity disorder (ADHD)

https://www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/

OP posts:
LoveMyADHD · 31/05/2026 23:31

Sunshineclouds11 · 31/05/2026 19:06

Pretty good day for day 2.
only thing he’s complained about is feeling dizzy. Does this wear off as a side effect?

He needs to ensure he’s hydrated and eats protein throughout the day xxx

chillberry · 01/06/2026 06:40

We tried atomoxetine at bedtime with DS (13) for the past two nights. He reported tummy ache, headache and difficulty sleeping (despite also taking melatonin), and says he doesn't want to take it anymore.

I wondered if it was too far away from having eaten (about an hour and a half after dinner) but he got the same side effects right after breakfast on day 1.

I guess we'll need to pause this one, unfortunately.

I do wonder if we should try guanfacine again. DS tried it last year but was home with EBSA and autistic burnout at the time and wanted to stop after a few weeks. We didn't think it was helping massively but it was hard to tell given the circumstances and that he wasn't going to school at the time. But when he came off it, we saw more hyperactivity and antagonstic behaviour with his sibling, so realised it had been doing something.

Has anyone had better luck with a med on a second try?

Sunshineclouds11 · 01/06/2026 09:33

@LoveMyADHDThank you, gave him a good protein breakfast and made him take packed lunch so put protein in there.
fingers crossed for a good day at school.

LoveMyADHD · 01/06/2026 12:36

chillberry · 01/06/2026 06:40

We tried atomoxetine at bedtime with DS (13) for the past two nights. He reported tummy ache, headache and difficulty sleeping (despite also taking melatonin), and says he doesn't want to take it anymore.

I wondered if it was too far away from having eaten (about an hour and a half after dinner) but he got the same side effects right after breakfast on day 1.

I guess we'll need to pause this one, unfortunately.

I do wonder if we should try guanfacine again. DS tried it last year but was home with EBSA and autistic burnout at the time and wanted to stop after a few weeks. We didn't think it was helping massively but it was hard to tell given the circumstances and that he wasn't going to school at the time. But when he came off it, we saw more hyperactivity and antagonstic behaviour with his sibling, so realised it had been doing something.

Has anyone had better luck with a med on a second try?

Please can I ask what’s the dosage he’s taking ?
also which brand (some are better than others )

we split the dosage between morning and evening , many do this to avoid side effects

LoveMyADHD · 01/06/2026 12:36

Sunshineclouds11 · 01/06/2026 09:33

@LoveMyADHDThank you, gave him a good protein breakfast and made him take packed lunch so put protein in there.
fingers crossed for a good day at school.

Good luck hope it turns out amazing

Iheartwhitetshirts · 01/06/2026 21:25

We are now on day 10 on Medikenet XL 10mg. I haven’t heard yet from school how my 6 year old is doing but mornings and evenings are still a nightmare. There was so much aggression from him this evening, he is finally just asleep and even now my heart is still racing from how awful it was. I can’t work out if this is normal medication come down or whether we should seek a different medication. Or indeed is this autism symptoms coming more to the fore? The doctor who diagnosed adhd suggested we also seek an autism diagnosis.

Not sure what to do now for the best with the medication. I’m so mentally drained. It’s affecting everything and I’m finding it hard to be hopeful this can change.

Anyone any words of wisdom? Thank you.

Hillyheath · 02/06/2026 10:12

Hi everyone I’m new to this group and looking for some advice/ experience.
My 10 year old son has had an unsuccessful trial with Equasym xl (made him very anxious and aggressive) and is now on Strattera (25mg) which since going up from 10mg to 25mg is also making him feel moody, lack of appetite etc. The psychiatrist chose to move him from stimulant to non stimulant due to the level of anger he was feeling from being on a stimulant and apparently non stimulants can be better for anxiety.
He’s not happy on Strattera and says he wants to stop taking it tomorrow if he still feels rubbish today.
He’s only been on Strattera for a couple of weeks. Does anyone have any experience of going from stimulant to non-stimulant medication and if so how long did it take to settle down? And did you ever go back to trying a different stimulant? I’m just not sure whether to carry on or not, obviously will check with the psychiatrist but wanted to see if anyone had any experience of this kind of situation

Sunshineclouds11 · 02/06/2026 11:16

@IheartwhitetshirtsWe’re also very new on this journey, day 4. Same meds and dosage.
He Hasn’t had a massive come down from it, yet. But the DR said to me that they can issue a 4mg top up for the night time if needed. Or it be May that it’s not the right medication for him.

LoveMyADHD · 02/06/2026 19:54

Hillyheath · 02/06/2026 10:12

Hi everyone I’m new to this group and looking for some advice/ experience.
My 10 year old son has had an unsuccessful trial with Equasym xl (made him very anxious and aggressive) and is now on Strattera (25mg) which since going up from 10mg to 25mg is also making him feel moody, lack of appetite etc. The psychiatrist chose to move him from stimulant to non stimulant due to the level of anger he was feeling from being on a stimulant and apparently non stimulants can be better for anxiety.
He’s not happy on Strattera and says he wants to stop taking it tomorrow if he still feels rubbish today.
He’s only been on Strattera for a couple of weeks. Does anyone have any experience of going from stimulant to non-stimulant medication and if so how long did it take to settle down? And did you ever go back to trying a different stimulant? I’m just not sure whether to carry on or not, obviously will check with the psychiatrist but wanted to see if anyone had any experience of this kind of situation

Edited

Yes we re on both

originally on various stimulants then moved to just Atomoxetine for few months and now on both Atomoxetine and Medikinet which is good combo for him

Atomoxetine acts on two separate brain areas ; the 1st is increasing norepinephrine and you should be able to see an immediate effect on this within a few days

have you seen any calmness at all? Likely it’s the side effects that make him feel rubbish, is he eating lots of protein for his brain to create lots of lovely neurotransmitters? We give eggs daily plus Beef isolate powder plus egg white powder xxx

LoveMyADHD · 02/06/2026 19:58

Iheartwhitetshirts · 01/06/2026 21:25

We are now on day 10 on Medikenet XL 10mg. I haven’t heard yet from school how my 6 year old is doing but mornings and evenings are still a nightmare. There was so much aggression from him this evening, he is finally just asleep and even now my heart is still racing from how awful it was. I can’t work out if this is normal medication come down or whether we should seek a different medication. Or indeed is this autism symptoms coming more to the fore? The doctor who diagnosed adhd suggested we also seek an autism diagnosis.

Not sure what to do now for the best with the medication. I’m so mentally drained. It’s affecting everything and I’m finding it hard to be hopeful this can change.

Anyone any words of wisdom? Thank you.

We always have issue with Medikinet causing aggressions but we’re on 40mg

what helped us

  • magnesium in the night as it’s depleted by meds
  • a bit vitamin C after schools it’s detoxing meds

if he’s so aggressive with no improvements you might need to look at different med (it’s not the end of the world there are other stimulants ) x

MissHavershamReturns · 02/06/2026 20:06

@Iheartwhitetshirts Is the agression only after lunch? Because it might be worth looking at whether that is a crash as the medication leaves his system abruptly. We have a lunchtime top up prescribed to smooth this out which removes the anger for us.

OP posts:
Hillyheath · 04/06/2026 09:37

LoveMyADHD · 02/06/2026 19:54

Yes we re on both

originally on various stimulants then moved to just Atomoxetine for few months and now on both Atomoxetine and Medikinet which is good combo for him

Atomoxetine acts on two separate brain areas ; the 1st is increasing norepinephrine and you should be able to see an immediate effect on this within a few days

have you seen any calmness at all? Likely it’s the side effects that make him feel rubbish, is he eating lots of protein for his brain to create lots of lovely neurotransmitters? We give eggs daily plus Beef isolate powder plus egg white powder xxx

Thanks so much for this. He usually has eggs for breakfast and then protein rich dinner. He tells me his appetite has been affected at lunch though (he’s at school then so I can’t see what’s happening). This morning he said he wouldn’t take it then changed his mind and then was annoyed that he’d taken it. He says it’s making him feel sad/weird. I’ve noticed a slight improvement in his ability to sit and do homework though. Did your child have any side effects? Xx

LoveMyADHD · 04/06/2026 20:25

Hillyheath · 04/06/2026 09:37

Thanks so much for this. He usually has eggs for breakfast and then protein rich dinner. He tells me his appetite has been affected at lunch though (he’s at school then so I can’t see what’s happening). This morning he said he wouldn’t take it then changed his mind and then was annoyed that he’d taken it. He says it’s making him feel sad/weird. I’ve noticed a slight improvement in his ability to sit and do homework though. Did your child have any side effects? Xx

Tbh the only side effect is aggression , nothing else thankfully … if you check out Reddit side effects are shocking but we ve been ok

so for aggression to be avoided we split the dose and he’s bit better

we give first dose as soon as he wakes up on empty stomach but if you have side effects perhaps take with food

i also give kefir in the evening, and magnesium , zinc and I think that’s the reason for not experiencing ill effects

the sadness he feels is possible calmness for the first time 🤣
if I were you I’d insist especially if you noticed he’s calmer . Bribe with anything possible!

MissHavershamReturns · 04/06/2026 22:23

@Hillyheath according to the book linked in the op around half of all children have no side effects at all and for us once we had fixed medication rebound with a lunchtime top up there are no side effects for our ds other than some lunchtime appetite suppression. I hope he can persevere a bit. I think they really do have to get used to feeling different.

OP posts:
Iheartwhitetshirts · 04/06/2026 22:43

MissHavershamReturns · 02/06/2026 20:06

@Iheartwhitetshirts Is the agression only after lunch? Because it might be worth looking at whether that is a crash as the medication leaves his system abruptly. We have a lunchtime top up prescribed to smooth this out which removes the anger for us.

It’s in the evenings when he returns from childcare. But it’s always been this way as he masks behaviour in school. Though they still pinpoint focus and attention as well as impulse control as issues.

tonight was the worst yet for anger and aggression. He hit me multiple times and has literally just fallen asleep. He was so aggressive and angry. Should I just stop administering the medikenet until I can talk to the doctor? I will email first thing but I have found her slow to respond so may not get a response tomorrow. I can’t cope with any more evenings like this 😟 Google said I can just do stop if we consider side effects to be severe but I’m worried about doing the wrong thing.

MissHavershamReturns · 04/06/2026 22:47

@Iheartwhitetshirts that sounds incredibly difficult. I would email the consultant marking the subject line as urgent and would call her secretary in the morning too and ask if you can get an urgent response.

OP posts:
Iheartwhitetshirts · 05/06/2026 17:35

MissHavershamReturns · 04/06/2026 22:47

@Iheartwhitetshirts that sounds incredibly difficult. I would email the consultant marking the subject line as urgent and would call her secretary in the morning too and ask if you can get an urgent response.

Thank you I spoke to the consultant today and based on the side effects two weeks in we have switched to a non-stimulant and will stop the Medikenet. Will likely get the script next week. Stay positive for us!

I feel so sorry for my poor little boy as I know it’s not his fault but my goodness am I drained!

Thanks for your support

LoveMyADHD · 05/06/2026 19:51

Iheartwhitetshirts · 05/06/2026 17:35

Thank you I spoke to the consultant today and based on the side effects two weeks in we have switched to a non-stimulant and will stop the Medikenet. Will likely get the script next week. Stay positive for us!

I feel so sorry for my poor little boy as I know it’s not his fault but my goodness am I drained!

Thanks for your support

Edited

Ah well done ! Which one did you switch to ?

good luck x

TrentCrimmsflowinglocks · 17/06/2026 16:52

Hi 👋 Does anyone on this thread have any experience of ADHD meds with a kid who had PDA? Our DS is currently on Medikinet XL but we feel it’s making the anxiety, and thus PDA, worse. We want to talk to the doctor about alternatives. Would be interested to know what has worked for your child…

Sunshineclouds11 · 17/06/2026 18:02

@TrentCrimmsflowinglocksHi, we’re very new to the journey as only couple of weeks in.
my DS is on the same meds, we’re on 20mg atm. What dose is yours on?

No PDA but we have found since going up to 20mg it has helped his anxiety.
we found when he was on 10mg he was pretty angry and a lot of other emotions were heightened.

deffo worth a chat about dose or an alternative

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