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!

@LoveMyADHD - ah interesting - mines had a real rough free months - large and really embarrassing (for him) meltdown at school and he's not really been right since - I've paid for him to have counselling to help his self esteem and coping mechanisms and I hope that's helped him. He says he feels sad a lot and I think he's getting more anxious.

It's a worry. I've been waiting 3 years now and still not been seen by the NHS, so it's all off my own back.

I hope you can have a nice time / it's so stressful this all. I've got a constant nagging worry all of the time about him and it's wearing isn't it.

I definitely understand the constant nagging feeling and the dread collecting from school thinking what are they going to moan about today.

I could rant forever about this. My son could literally do CPR and do an emergency trache and the teacher would find something to moan about

I know same here, no nhs support apart from shared care …

we just had the review appointment , doctor (he’s lovely) wanted to speak to DS to see why he’s getting into trouble lately… he gave him a good telling off 😂

he’s happy I increased to 40mg but that’s it no more. Easter break we ll start Intuniv, but he needs to continue with Medikinet till the former takes effect and hopefully we ll half medikinet

according to him it ll relax him and take the edge off things and has nowhere near the Medikinet side effects

has anyone tried this?
@HauntedPencil do you have a review coming up? Would you suggest perhaps? X

@LoveMyADHD - what was the thinking of trying the other meds, I've tried reading but it's saying they aren't as effective, is it as the 40mg isn't working as well as hoped? I'm not sure what to try

It’s supposed to relax him apparently

non stimulants apparently are not great for focus/school work, but they’re good for behaviours, impulsivity , anxiety

for focus he ll stay on Medikinet but the idea is that we ll reduce the dose

40mg is starting to give us good feedback again , but personally I am not happy with such high dose of stimulants, I’d rather he has a non stimulation that be takes even daily

if your kid has more behaviour rather than focus issues honestly I’d recommend giving it a go? x

Really hoping for some quick responses but does anybody know if taking 2x 10mg equasym is the same as 1 x 20mg, in terms of how it releases etc.
We’re out of 20’s and my ds is adamant when he has 2 x 10’s it doesn’t work the same and he has a bad day so now I can’t get him into school.

My paediatrician said it would be, yes but we haven't ever done it.

My suspicion though is that he's probably right. They probably aren't exactly the same in terms of when the drive is being released? For example, for us the 20's only lasted until 3pm but the 30's he is now on last until 6pm. Not sure that 2 x 20's would last the same.

Not the same especially for slow release (Medikinet experience only )

Interesting. Doctor had previously implied it was the same but my ds is getting frustrated that I don’t seem to believe him. It may be psychological. But he’s now had 2 difficult days at school so maybe they are not working the same.

we had exactly the same @Freshstarts22 where he didn’t directly say it was the same but he kind of implied

basically back at the start when we were trialling doses he gave us a 20 and a 10… absolutely it wasn’t the same as the 30!

is it tricky to get 20s?

Out of stock at the moment. I’ll be able to find them somewhere but need to use 10’s for now. Only have a couple of days worth of them left though.

Have you tried this @Freshstarts22
https://pharmacystockchecker.com/

Joining this thread!

My DS, nearly 13, has inattentive ADHD (along with autism, epilepsy & asthma). He was on Xaggitin 27 since diagnosis at 10 years old. But then developed epilepsy last summer & was put on Carbamazepine for that & school noticed a massive change in his attitude & alertness, from star pupil (for effort) to spaced out & rude. So we changed epilepsy meds to Levanteracitam & I also requested a review of ADHD meds as he has grown. Paediatrician agreed & he is now on Concerta 36. Back to being brilliant at school & home - although will never be level with his peers & we are hoping to reduce number of GCSE options from the usual 10/11 at his school to maybe 6 or 7.

Went to get his meds today (2nd time for Concerta) & stroppy pharmacist informed me that they don't have them! Apparently a national shortage & something to do with government! They expect me to ring GP every month then ring them, then back to GP & back to them. Never mind the fact that DH & I both work & the GP never answers the phone so we have to go there in person. It is such a battle & I can't help but think it shouldn't be that way! Makes me worry for people who can't actually advocate through themselves through learning disabilities, being housebound or with a limited understanding of English.

Anyway, rant over & I'm hopeful this will be sorted before long, at least for this time.

Hey lovely

great to know about concerta it’s our next action call!

how old is DS? Does concerta actually stay in his system till late?

what are you going to do without meds?!

Hi! My DS is 13 in a couple of weeks. As far as I can tell, it does stay in his system till late, he is pretty compliant & (relatively) switched on till bedtime, not so much at breakfast time, when he takes it 🙈

I think I must have made quite the impression at the pharmacy as they have magically managed to obtain some Concerta which I can pick up today! So I would say, don't be afraid to speak up for your DC. We shouldn't have to & I find disagreeing with anybody or asking for what I need hard, but for my DC I turn into Tiger Mum. Also I've kind of accepted that's life with a disabled child 😏 (although it took me a long while to be comfortable with thinking of DS as being disabled).

Good luck on your journey with it all!

hello 👋
my 14 year old daughter has ASD, ADHD inattentive type mainly and mental health problems. She’s been on Concerta XL since December and has increased up to 36mg. It’s not making any difference at all, maybe slightly less impulsive, but can’t concentrate any better. Very hard to see Cahms psychiatrist, only every 3 months. Don’t know what to do now? Increase meds again? Try something else?

Has she tried any other meds? We have been on Medikanet XL 25mg per day (split 15 and 10). We tried Concerta which I understand is in the same family of meds but it had zero effect on my DS. So maybe try another med?

I’ve sent an email to her care coordinator at Cahms to ask about another type. Thanks for sharing your experience. I thought there must be something wrong with my daughter for the meds to be having no effect!

Good luck @Starlightstargazer - we were on 25mg Medikanet and that worked. 15mg in morning of XL with breakfast and a top up of 10mg at lunchtime. Then doctor said try Concerta as same type of drug but you only take once a day and it should last longer. He put us on 27mg - didn’t work and he upped it to 36mg. Still didn’t work - only effect was lots of tears. So we went back to Medikanet after 3 weeks with Concerta. Medikanet still worked.

The doctor was really surprised Concerta hadn’t worked as he said it was v similar drug to Medikanet. But it didn’t. Not sure why. So do ask for a different drug. Good luck and please report back to this board if you find one that works! Xx

Thank you! I will do!

Hey everyone. I feel like such a bad person as I just run in for advice and run out again 🏃 💨 being back at work is really eating up my time!!!

DS6 has been on melatonin 2mg since November. Been working great, up the last few weeks I feel that we have regressed a bit. A few night wakings and the biggest problem... 0430-0500 wake ups every damn day.

This has been happening consistently now for the last few weeks. I've managed to flip my routine by taking him out on his scooter at 5am (not a joke) or taking him swimming at my local gym. We will get back, do chores and then DH and DD is awake. On Friday I dragged him around Tesco before work!!! We are doing this before school! 🥱

I've given him a medication break on the melatonin. He's falling asleep okayish but still waking up early. How long do you do med breaks for? I'm thinking 5 days?

Thanks so much you lot. It's DD's birthday today, she's 1!!!!

Hey @AndrewGarfieldsLaptop

with melatonin you just have to not give in the non meds days (presumably weekends)

he prob developed tolerance .. if he takes meds tomorrow start it again tomorrow

perhaps though it’s best to change the form of melatonin , are you using the one from doctor? Amazon have a really good one from Now , it’s just drops very effective xxx

Hi @AndrewGarfieldsLaptop we are on 3mg of melatonin and my DS is a slight 9 year old. We have to have melatonin breaks every 6 weeks or so but we find a break of 2 days is absolutely fine for us.

My DS has always woken early (6-6:15) and melatonin doesn't change this but it's the getting to sleep it helps. We know when he needs a break as it starts taking him hours to fall asleep again.

Did you find the melatonin helped the early wake ups when you initially started it? My understanding of melatonin is that it doesn't help you stay asleep, just to fall asleep, but I could be mistake with that!!

Interested to hear about the amazing melatonin though @LoveMyADHD as we order online and it takes weeks to deliver 🫠