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

[MissHavershamReturns]

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.

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.

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’.

This is thread 3 and 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.

I’m sure thread 3 will be the best yet, so welcome one and all!

Oh , forgot to ask, do you know if it would be worth ds taking it after dinner instead of breakfast. He is more likely to eat a substantial dinner after school, as he rushs breakfast, and gets himself het up before school. I was thinking he may sleep off any side effects too.

Hi all - does anyone have any experience of Elvanse? DS is currently on equasym 30/40 mg and has having a good run of a few months then a few months of hell outbursts incidents and he’s sailing very close to the wind at school. Hoping for this to give hom a more steady time

Yes that’s what many do but sleep might be interrupted .. what did doc say?

we take it first thing in the morning on empty stomach, he has breakfast half hour after …. You might have to play around with this as well as the food he’s eating (if we give fatty food like butter it doesn’t work at all, but if we give bit of animal fat it’s perfect)

we didn’t have any side effects (if we had any they must have been minuscule as can’t remember major issues )

guanfacine calmed my kid down a bit but nowhere near Atomoxetine

Elvanse was amazing for DS but sadly made him super aggressive especially towards evening

had it myself too, had none of the aggression, gave me full on focus, have never experienced anything like that , definitely worth trying

Thanks - will have to try it as both times has moved from 30 to 40 equasym he’s been withdrawn and angry so thinking that’s not the answer 😢

oh bless him.. if stimulants make him angry, it’s worth considering non stimulant or even a combination of both

also worth looking into the breakfast he’s having , if he doesn’t have enough neurotransmitters then meds will make him angry … hence the need for good quality protein with bit of animal fat for fuel

good luck x

In case anyone is reading for meds - he’s had a great few days on the Elvanse after a horrible few months. Early days but no anger or evening moods etc as of yet

How amazing @HauntedPencil so happy for you ! Elvanse is a super drug! Fingers crossed that’s it! X

We have just moved to Elvanse 20mg (3 days so far). We were on Medikinet XL 10mg but the red mist rage was utterly horrendous and frightening (two especially scary episodes over 3 weeks so stopped, took over 3hrs each time to calm him down). We have exams starting end of next week (he is 16) so treading carefully at the moment with Elvanse. Getting up early so he can have a huge breakfast.

@HauntedPencil so pleased to read your update!

I hope Elvanse is better for you too @Theonlyoneiknow

Does anybody have any experience with medication refusal in a primary school aged child? He can take tablets fine, but has been put off by the negative side effects with the previous stimulants, and I don't blame him.
I have explained this is a non stimulant and completely different, but it isn't working.

@AnEnigmaAndHope no chocolate, phone, YouTube, gaming, sweeties will ever work? 😐

I just saw we are almost at the end of this one - here is the new thread www.mumsnet.com/talk/special_needs/5535701-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others
{Edited my MNHQ at request of the OP}

Hello all, sorry if this has been covered before but I am struggling to find specifics. I’d really appreciate some advice on ADHD medication formulations that might work for a child with autism and multiple sensory issues around taste and swallowing.

My DD (12) has been on methylphenidate since 2024 under specialist care. We’ve had multiple titrations and tried different formulations, but nothing has really worked for her so far.

She cannot tolerate capsules at all (we tried Equasym XL and similar). We also tried opening them and sprinkling the contents onto food (Nutella, yoghurt, Biscoff, fruit purée etc.) but she can still taste the bitterness and won’t take it. In desperation, I even bought some of the smallest empty capsule cases I could find and tried splitting the contents of one capsule into those, but it filled around six of them, which obviously then created a different problem as she couldn’t manage taking that many.

We then moved to immediate release tablets (20mg at 8am, 20mg at 12, 5mg later). She could just about manage the morning dose by letting it soften in her mouth, but she found it very difficult and it caused many meltdowns. The bigger issue was needing to take the second dose at school, which she absolutely refused due to anxiety, so that has became unworkable as she was medicated until 12 noon and then the dose dropped off a cliff.

We’ve now been given a 2-week trial of Matoride XL 54mg (prolonged release) to try a once-daily option, but the tablet is still too large. She tried it today and couldn’t swallow it, and ended up sucking it so the coating started to come off, which I’m concerned will affect how it works.

At this point we feel quite stuck. We’ve spent hundreds of pounds privately trying different options, and I just want to find something that is both effective and actually manageable for her to take.

I’ve recently heard about Quillivant XR (liquid long-acting methylphenidate) and wondered if anyone here has experience of it? If so, I’d really appreciate any insight into what the taste and texture is like (especially for children sensitive to bitterness), how easy it is to take day-to-day and whether it’s been effective compared to tablets/capsules

More generally, I’m also trying to understand if there are any slow-release tablet options that come in smaller tablets, or any other alternatives for children who can’t swallow tablets or capsules and are very sensitive to taste? and how do people even find out which formulations are smallest/easiest to take? Our specialist is fab but isn’t super up to date on what the actual tablets look like.

DD is not convinced the medication helps, partly because it’s such a pain for her to take, but as a family we can absolutely see a difference in her ability to cope when she has taken it, so we are keen to get this right for her. Any experiences or suggestions would be hugely appreciated as we’re going round in circles a bit. Thanks so much

There is a fantastic solution to this : Elvanse!

for some of us it’s better as in, more effective but in your case you can also open and dissolve in shot of water

you moved to a concerta like drug which is tricky you can’t even open it . Ask doc for Elvanse you won’t go back (I take it too!) x

Elvanse has also been great for my DS and we were told we could open the capsule and give the powder. (He now takes it fine with water)

Thank you both so much. I will ask about Elvanse. Does it have much of a taste at all?

It’s tiny bit bitter , worst case scenario you can give with some Nutella or yogurt you just need to be cautious not to waste the powder; and as with all these drugs , protein for breakfast is key so that right neurotransmitters are created (for the drug to use )

good luck x

DS (13, auHDHD w PDA) started atomoxcetine today. He got very tired, a little headachy and didn't eat much. At bedtime he said he didn't want to take it anymore because of the side effects. It's taken us months to get him to give medication another try and I was really hoping this would be a more positive experience for him.

He tried three different flavours of methylphenidate last year but lost a lot of weight and we didn't see much of an effect.

Then he tried guanfacine but wanted to stop bc he found the pill bitter. Once he was off if, we noticed it had helped a bit with impulse control. But he was burnt out and not going to school the whole time we were titrating last year, so we decided to pause until he was back in school.

Now he's settled in a lovely SS but we see that he's really struggling to focus on anything remotely academic and he only wants to go in for the "fun" stuff. He's a bright kid but I don't see how he's going manage without some support for his focus.

Has anyone's child had similar side effects initially but seen them wear off after a little while?

My son started amoxetine, had a horrendous first day, but after that he is doing great! I give it after dinner, and he sleeps fine, maybe that makes a difference for us. I wonder if timing could make a difference? My son also had horrible experience on stimulants.

Please can I ask what brand do you use ?

did doctor suggest you take it after dinner? Did you see a decline in behaviour just before taking the pill every day ? What dosage is he on? x

The pharmacy gave us a mixed month of Zentiva and Mylan (both generic brands I think). He has been on Mylan so far.

We were advised to take the Amoxetine once a day with or after food, and were told morning or night was fine. This is because there aren't any crashes like steriods, and it maintains a steady level in the system once it builds up.

Ds tends to be anxious on school mornings and rush breakfast, so we chose to give him the med after dinner where he is more relaxed, and eats a good amount. He then has a few hours to relax before bed. With some children it can cause insomnia, and for others it can cause sleepiness, so you would need to tweak depending on how your dc reacts.

Ds is sleeping normally, has a very sensitive nervous system too, so we thought he would sleep off any side effects if there would be any at the start. This timing is working out great for us, and he wakes up unaffected and content.

With having to take Methylphenidate in the morning, it caused a nightmare before school, so many side effects and was the complete wrong drug. He lost weight on this, had reflux and a terrible fight or flight revved up response. It caused him medication refusal foe weeks.

We are on 10mg Amoxetine (pill form) a day at the moment, so a low dose for now. He is 9.

Day 1 was a battle field to the point he was so irritable and angry, and below his baseline. I was honestly convinced this wasn't going to work, but pleased we stuck it out, because from day 2 he improved, and was back to baseline and is beginning to show positive signs of improvement every day. Appetite unaffected, and no losing weight!

Do you think you'll give Amoxetine a go/stick with it to see if things settle?

Hi, DS recently diagnosed Autism, ADHD and anxiety.
waiting on private pescription coming through.
guessing it’s normal to second guess yourself for putting them on meds?
im having abit of a wobble.

Oh, absolutely! I felt the same way you do! It is completely normal to have those wobbles.
Please try to remember that you are not changing your child’s personality. If you ever felt that they were losing their spark, you have the power to stop or adjust the medication. Think of the medication as simply setting their baseline where it should be. We have started on the lowest dose possible; it is a fine balance and takes a bit of time to find the right drug and dosage. We have found this quite tricky.
ADHD is a neurological reality sadly, and it can be incredibly noisy and exhausting for a child to live with that constant mental noise; it has tormented my dc and made life more difficult than it should be. It is difficult for any other intervention to be effective as well when their mind is trying to process so many things at once, so I have found school techniques haven't been as successful as they could potentially be.
I don't know how old your DC is, but I think about the future; as ds heads into secondary school, the external pressures increase significantly. Without the right support, that’s often when the risks of feeling overwhelmed or spiraling really start to climb. By seeking this help now, you are building a safety net that allows them to navigate those years with more stability and confidence. You are giving dc the support to get the most success possible, rather than letting them struggle. You are absolutely doing the right thing, and being a good, supportive Mum! 💐

Oh, and for what it's worth, I have undiagnosed ADHD, and I wish more than anything this help had been available to me.