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Here are some suggested organisations that offer expert advice on special needs.

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

64 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:
TrentCrimmsflowinglocks · 21/07/2026 19:01

@Iheartwhitetshirts I empathise, we had to go down private route too. It’s taken 2 years to get the NHS to accept it.
Has your kid had any side effects on the meds?

Iheartwhitetshirts · 22/07/2026 14:45

TrentCrimmsflowinglocks · 21/07/2026 19:01

@Iheartwhitetshirts I empathise, we had to go down private route too. It’s taken 2 years to get the NHS to accept it.
Has your kid had any side effects on the meds?

Not that we can see. I didn’t even notice increased tiredness etc. maybe when we increase the dose we will.

The side effects of Medikenet XL were another story though!

TrentCrimmsflowinglocks · 22/07/2026 16:00

@Iheartwhitetshirts the only side effect we had from Medikinet was increased anxiety which has got steadily more pronounced over many months. We tried Elvanse recently, but DS complains it makes him feel dizzy so we only managed a few days.

chillberry · 10/08/2026 16:52

Does anyone know of some good videos by kids for kids about the benefits of ADHD meds? My very PDA auDHD 13yr old absolutely refuses to try meds again but I was really hoping we could convince him to give it another go over the school hols. I thought maybe some resources from kids around his age might make more of an impression than I'm making.

He's a bright kid but he really struggles to get through the school day (even in a very flexible, trauma-informed SS) and I'm afraid he's likely to burn out again if we can't figure something out soon.

He didn't do well on methylphenidate (lost a lot of weight); did better on Guanfacine but then stopped bc he thought it tasted bitter; tried two doses of atomoxetine a few months ago but gave up bc he got a tummy ache and couldn't sleep (he takes melatonin at bedtime).

It's incredibly hard to reason with him -- I've explained that if we found the right med it could help make school easier for him, and that it doesn't mean he'd have to take it forever, but he can't see the big picture and only reacts to the here and now. I think his PDA and a sense of not having control also contributes to him rejecting the idea of meds.

MissHavershamReturns · 10/08/2026 23:28

@chillberry I’m really sorry but I’m afraid I don’t but I’m hoping someone else can help you on this one. The only idea I have is to maybe share some sections of the meds book in the op with him as there are some quoted words from kids in there, but would require sensitive handling I appreciate. I hope you can persuade him to agree to try again and keeping fingers crossed for you

OP posts:
MrsKateColumbo · 26/08/2026 18:57

Thanks for the recommendation of atomoxetine @lovemyadhd DS'doctor didnt feel it would do much but we are one week in and he hasnt had his dexamphetamine for 3 days as he seems much calmer. He will still take it at school.

I keep wondering if it's a coincidence as he's only taken it for 1 week but this is the first time in nearly 2 years that he hasnt needed a stimulant...

MissHavershamReturns · 27/08/2026 16:48

@MrsKateColumbo that’s great to hear you’ve seen an improvement and hopefully it continues. Please do keep us posted if you would like to.

OP posts:
LoveMyADHD · 27/08/2026 22:04

MrsKateColumbo · 26/08/2026 18:57

Thanks for the recommendation of atomoxetine @lovemyadhd DS'doctor didnt feel it would do much but we are one week in and he hasnt had his dexamphetamine for 3 days as he seems much calmer. He will still take it at school.

I keep wondering if it's a coincidence as he's only taken it for 1 week but this is the first time in nearly 2 years that he hasnt needed a stimulant...

Super happy for you !

not coincidence.. we noticed calmness straight away !

MorrowTreasure · 28/09/2026 08:59

Hello, new here 👋 My DS is 12 and has just started 3 weeks ago on medikinet XL. He was diagnosed ADHD in June and I’m trying to get a ASD referral for him currently. He is really anxious too. So we started on medikinet 10mg for a week zero effect and then 20mg for last nearly 2 weeks. He has had some he says improvement with focus lasting around an hour. He has had two periods of diarrhoea first one lasting 4 days with 2 days off school. And he’s quite low. Crying yesterday afternoon. He already takes melatonin to sleep and his appetite is knocked out till about 3pm but he was impulsive with eating beforehand so I’m not at the moment worried about that and he eats plenty in the afternoon/evening.
I have a medication review tomorrow and I’m wondering whether moving him to lisdexamfetamine would be a good idea? Or will they want to just increase the dose of medikinet?

Sunshineclouds11 · 28/09/2026 11:12

@MorrowTreasureHi!
my DS is on Medikinet XL, he’s now on 30mg which have been has deffo been the sweet spot.
he’s diagnosed with anxiety and it’s really helped that also.
he’s was very up and down on 10mg and 20mg mood wise but when up’d he’s been great and happy.
also an impulsive eater and his eating wasn’t knocked until 30mg he has lost weight but he’s been able to afford to if that makes sense for how much he was eating before hand.
I always give a good plenty breakfast and he makes up for lost food on a nighttime.

you can mention it to them but in my experience up’ing a dose has been the game changer for us. I understand this isn’t the case for everyone so deffo worth a mention.

MissHavershamReturns · 30/09/2026 20:19

@MorrowTreasure how did the review go?

OP posts:
MorrowTreasure · 30/09/2026 20:27

They want to move him up to 30mg medikinet which is what I expected but they did say after a couple of weeks we can change to xenidate which might be a better fit for him? He’s bouncing off the walls since he got home from school scooting and skateboarding through the house.

LoveMyADHD · 30/09/2026 22:13

MorrowTreasure · 30/09/2026 20:27

They want to move him up to 30mg medikinet which is what I expected but they did say after a couple of weeks we can change to xenidate which might be a better fit for him? He’s bouncing off the walls since he got home from school scooting and skateboarding through the house.

Xenidate is like Concerta , it just last longer but mornings are not as intense so odd what’s the justification behind this …

hoping 30 mg Medikinet will work for you x

MorrowTreasure · 30/09/2026 23:11

Because he’s so hyperactive all afternoon and evening he needs something longer lasting. Medikinet only giving a hour or two of effect..

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