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!

Hi everyone, I've just found this thread and have been reading with interest. DS (16) was diagnosed with ASN about 8 years ago and was recently also diagnosed with ADHD. We've received information about different medications and have an appointment on Monday, I think, to get the prescription. He is genetically very skinny and has zero weight on him to lose!

Do you have any advice ahead of the appointment? Every single school report, every class, every teacher says "he needs to focus more", which winds me up! We have muddled through Nat5 exams last year and are now in Highers which is a different ballgame for him. He has just had prelims and left every exam after one hour (when it has been 2.5hrs long, but there is NO WAY he could stay in an exam for that time).

I read a mention of a book, which one is that please, that you'd recommend?

It seems like there is a lot of trial and error with the meds. We've had varying success (?) with different supplements (Magnesium, Iron, Lion's Mane, Brain Food). He said his brain went quiet taking the Lion's Mane but he's finding it harder and harder now with school work. Thank you!

@Theonlyoneiknow really good that you’ve found the thread useful and welcome! The medication book often recommended on here is The Parents Guide to ADHD Medicines by Prof Peter Hill.

I would suggest having a quick read about stimulant v non stimulant and quick acting v immediate release, just to get an idea of what the different options are. The NICE guidelines are a good read to understand what should happen at first.

https://www.nice.org.uk/guidance/ng87 this explains how the medication is suggested and titrated to reach the right medication and dose. 1.7.7 onwards here is useful: https://www.nice.org.uk/guidance/ng87/chapter/Recommendations#medication

If you can get the book I mentioned before on Amazon prime and read it over the weekend that is a really clear way in to how it all works.

so We’ve been switched from Elvanse to 5mg Amfexa twice a day, and an evening dose of 1mg guanfacine. Does anyone else have any experience of combining meds?

Yes @needaname19 that was my response on your last message

we’re on combination strattera and Medikinet now (Concerta up to last week)

guanfancine was ok for us definitely calmed him down a bit but not to the point that Atomoxetine did

Thank you for those recommendations!! I'll have a read and get the book 🌻

So DS (nearly 16yrs) has been prescribed Medikinet. The doctor would like us to trial it for 7 days during the Christmas holidays so we can see how to manage it at home before going back to school on the 5th Jan.

re Medikenet immediate release

Hi all, I’ve followed this thread for a while for support, it’s great. I wanted to offer that my DS was very sensitive to stimulant medication so the nurse started him on a low dose of 2.5 mg Medikenet in the morning which was increased to lunch time after two weeks. Initially when he was moved up to the 5mg to test out his tolerance he reacted badly - over emotional, highly irritable and was essentially worse off! This went on for days so we moved him back down to this minimal dose. He was getting benefits from the 2.5mg and it was certainly helping with his emotional regulation and concerntration so he continued on 2x a day and about four months later he moved to the 5mg again - but this time with very positive effect and takes this morning and lunchtime - he can have a top up in the afternoon for clubs. I would say it’s made such a difference to his emotional well being and I’m glad we took a slow approach even though at times I wasn’t certain if it would pay off. I think some children can take time for their body and neurological wiring to ajust and it felt like the longer he was taking it -even though it’s a daily cycle- then the better the benefits we saw. At the start there were blips and bumps but the longer it was taken over weeks the more increase in concerntration and general calmness - I think it gives children the opportunity to use strategies to control their behaviour and emotions that before they just can’t because they feel too overwhelmed in the moment. Good luck to everyone on this difficult journey x

Hi all, 13yo auDHD PDA profile DS is very resistant to taking meds. He was on various flavours of methylphenidate last year but lost weight and didn't show any improvements in focus, so we then switched to guanfacine. He was on that for around 8 weeks but again we didn't see a lot of improvement (slightly less antagonistic towards his sibling) but he became resistant to that as well -- possibly bc he found the tablets bitter. He was also burnt out and not attending school, so we decided to postpone any further titration until he was settled in his new school.

We're now trying to encourage him to try Atomoxetine but he is adamant that he doesn't want to. He is a bright boy and has had his heart set on becoming a vet when he grows up, but he struggles so much to stay focused at school, even in a very atuned SS. We have pitched meds as a means to help him achieve his goals, and emphasised that it's not something he'd necessarily have to take his whole life but that it could be really helpful and make some things in life a lot easier right now, but he can't see the bigger picture.

I think we might just need to wait it out until he makes the choice for himself, but it's so sad to see him struggling when there might be something that could help him now. Any suggestions on how to navigate this would be hugely appreciated. Thanks.

Anything at all you can bribe him with?

with Atomoxetine , the struggles will reduce as it’s building up. So you mainly have to convince him the first 2-3 weeks..

is there absolutely nothing you can tempt him with?

Can you have him speak to someone you know whose life is improved by meds?

We are 5 weeks into guanfancine and no change i dont think,

Perhaps good excuse to start Atomoxetine ?

Hello, yes this would be our next stop tho not sure whether to try guanfancine for a bit longer/higher dose.

I remembered the reason we didnt go for atomoxetine was because DS previously had issues swallowing capsules
Hmmm.....

Is anyone able to measure the size of an atomoxetine capsule please? I have found empty capsules on amazon in different sizes so might get some prsctise ones...

@LoveMyADHD He's very good at seeing through bribery attempts! We could try offering him extra Minecraft time. Otherwise, I don't think there's much that would shift his stance ATM. Except getting a dog, which DH is not particularly keen on.

@Mrburnshound I don't personally know anyone who could speak to him about their own positive experiences with medication.

Does anyone know any YouTube channels that might be helpful? I follow How to ADHD (but haven't had a lot of time lately to watch). Maybe a channel by ADHD kids for ADHD kids - if there is one - could help.

They’re about 1.5 cm very small and thin, you can’t open them though

they do liquid as well for cases like this - worth asking

Yes absolutely bribe with anything you can !!

I have just found this thread and am hoping for some advice, as not really sure what options are left for us - and reading NICE guidelines we seem to be in an unusual position, but may be more common than I think.

AuDHD 17 year old. On medikinet since 2020, now on 30mg slow release (8 hours) with a 5mg top up. Also on venlafaxine for depression (257.5mg) and melatonin for sleep and proponol as needed for anxiety (normally 5mg most days). Recent (Oct or Nov) medikinet increase to 30mg not helped as much as needed, so plan was to change medication.

Intuniv previously did not work (intrusive thoughts of self harm). Tried Elvanse (20mg) over xmas period, with plan to increase to 30mg after a week. Day 1 was awful, meltdown after meltdown, wanted to kill themselves. By 8.30 we were all exhausted and teen was asking for intervention. We have tranquilyn for emegencies (only used once before) so gave them that. Teen does not want to try Elvanse again.

However, where do we go from here given that stimulant and non-stimulant types have such an adverse reaction? DC is increasingly depressed and has gone from being on top of school work to not being able to sit mocks this week (they are also burnt out from pushing themselves with school work).

There are so many meds in him bless him, so likely some interact adversely . Elvanse , Medikinet might really be impacted by the other meds as they acting on same pathways (even if doctors don’t mention )

we had bad mood swings with Elvanse too (lots of emotions, aggression etc) although focus was great so we had to discontinue

we re now on Atomoxetine and a stimulant (trying Medikinet again but previously tried Concerta). Combination is not bad for now. Would you ask consultant to try out Atomoxetine? It saved him/us to be honest . We can’t do without it

Can anyone help advise me? My DD (AuDHD) has recently gone up to 2mg of Intuniv from 1mg. She’s now had 3 days of the new dose and is feeling sick, has a stomach ache and is feeling dizzy. Her meltdowns have got significantly worse. She’s irritable and emotional and refusing to get dressed today. She's just been full on screaming for 5 minutes because a painting went wrong. A mess basically. Has anyone else experienced this? Will it get better or does it sound like she's just not suited to this medication?

1mg had no discernible benefit, hence why the practitioner suggested going up a dose.

For context, we've tried Medikinet, Concerta and Meflynate - all made her an emotional wreck with such intense sensory sensitivities that we often couldn't leave the house as she couldn't wear anything.

I've reached out to the titration service but as it's the weekend there is obviously no one to speak to.

I’m curious what dose children are on for age/weight?

DS is 6 (7 is may) 24.3kg and on 30mg Equasym XL. We requested a review to consider an increase as it’s noticeably less effective than it used to be but consultant said not until he weighs more.

Weight in on 50th centile and he’s not been losing weight but I appreciate there’s usually some kind of ratio for max mg/kg or similar but I can’t see it anywhere.

what are other kids on?

thanks.

My son is 38kg and is taking 30mg Equasym XL plus an afternoon top up of 5mg. He probably needs to up the afternoon dose to 10mg soon, next review is in March.

Would an afternoon top up work for your son?

We tried a top up last year as the after school crash was (is) atrocious, but the Dr said we could only do that if the morning dose was reduced to 20mg. We gave it a go but he couldn’t manage school on 20mg unfortunately.

We used to have a really successful day on 30mg and it was just the end of the day that was tricky. Now it even seems ineffective during the day too, like it’s just not working properly anymore.