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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

984 replies

MissHavershamReturns · 19/04/2024 11:10

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!

Page 38 | Starting Medikinet - any experts around? | Mumsnet

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious s...

https://www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38

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MissHavershamReturns · 15/02/2025 14:34

@Hels20 remind me what dose of medikinet you are on? We were told 20s and 30s are tricky lately but 10s are fine. Mine is on 30s but script could be rewritten to take 3 x 10 if necessary, if that makes sense and if 10s are still ok!

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MissHavershamReturns · 15/02/2025 14:44

I’m so sorry not to have had time to reply to everyone up thread. Things IRL have been very intense lately for non-ADHD related reasons, so I’ve had limited time to be on MN.

Quick update for us - we are having a little med break for Half Term, but only for three days as poor ds has major mood swings with longer med breaks unless we taper him on and off, which we can’t do over Half Term as there aren’t enough days. We will give him a much longer break off over Easter - ideally a week to ten days completely off the meds.

DS is now mid way through Y8 and overall things are so much better than we ever ever thought they would be when we started meds in Y5 of primary. He got a merit mark this week for some good work in a weaker subject he finds hard and that we never thought he would be able to keep up to an average level in.

DS seems to be accepting his differences more and managing to keep up with homework ok so far. There are still many (many many) tough days but as a family we have learned to accept that while very difficult this is our normal and we rub along. We know Y9 and GCSES will bring new challenges but there are reasons to be hopeful too.

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MissHavershamReturns · 15/02/2025 14:46

@Hels20 I’ve just done Boots stock checker for Medikinet XL. Near me it’s currently out of stock in 10s and 30s in Boots stores but in stock in 20s, so maybe it’s a very patchy picture.

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Treeinthesky · 15/02/2025 19:56

Any one with kids on 8 hour methylphenidate ask for concerta it's available in all doses now and omg my daughter is so different I am so happy and so is she. Chemist4u have them available as do pharmacy4u. Yesterday she came out of school so calm. Prior we took methylnate xl 40mg and 10mg at lunch. 4pm 5pm hand stands in the living room and aggression. Prior to meds she was so violent and angry and sad. None of this now we had to keep increasing methylnate to help but it made her lose her sparkle. 36mg concerta has been a life changer.

I take 54mg concerta and the come down i don't notice. No anxiety no depression I've stopped propanolol and sertraline as well. I feel amazing.

I took elvanse as did my 10 year old she lost so much weight. The come down was horrible. It peaks at 4 hours then wears of quickly. Concerta doesn't.

My bf with conduct disorder and adhd takes elvanse 50mg and x1 dex same time and 1 dex if needed in afternoon. He couldn't tolerate 70mg made him say everything he was thinking and my God the anxiety and anger due to it wasn't good. He took meds all his child hood stopped at 19 went to prison as a result ... needs meds!! I've helped him.navigate the system and get back on meds. I find with elvanse he is emotion less which means he doesn't consider me but it stops the anger. Prior to going back on meds he threw a security staff through a glass panel during an anger episode whilst in turkey. Anyways his anger is much better he isn't triggered now so elvanse and dex really do help. He has taken my concerta today but 72mg and he is perfect shame he can't go on these as psych uk said he needs to be on elvanse for a year and change at his review.

Treeinthesky · 15/02/2025 19:58

ANYONE WHO CANT GET MEDS PLEASE TRY CHEMIST4U OR ONLINEPHARMACY4U ask the provider to send the script there. Chemist4u work with adhd360 so always have stock

Treeinthesky · 15/02/2025 19:59

dimples76 · 04/02/2025 11:04

@Mrburnshound the psychiatrist had said that he thought Vyanse was the best med for aggressive behaviours. I did wonder if he needed a higher dose or an additional med to combat the comedown because for the 6 or so hours it worked it did seem to help DS. However, he thought we better switch entirely- things had gone rather hideously wrong just before the appointment (my neighbour phoned the police because she thought DS had stabbed me).

Thanks for the tips re pill taking. We will give them a go later. We're going to the supermarket after school to get some more supplies.

Try concerta it's been amazing. Or ask for a dex top up at around 2pm

macap · 20/02/2025 22:35

Now DD is even starting to refuse the Nutella says the beads taste funny 😔

Genuinely don't know how else to give it to her! I so wish she'd just swallow the capsule then there would be no taste!

MissHavershamReturns · 21/02/2025 07:56

@macap sending lots of support and really sorry to hear the actual giving of the tablet continues to be difficult. Would there be any rewards she would respond to from moving up from cake decorations progressively to swallowing a tablet? Maybe going really slowly so 5 days per size and a sticker chart? I’m sure you’ve thought of and tried all this Flowers

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macap · 21/02/2025 10:31

MissHavershamReturns · 21/02/2025 07:56

@macap sending lots of support and really sorry to hear the actual giving of the tablet continues to be difficult. Would there be any rewards she would respond to from moving up from cake decorations progressively to swallowing a tablet? Maybe going really slowly so 5 days per size and a sticker chart? I’m sure you’ve thought of and tried all this Flowers

Thank you

Unfortunately the high reward stuff also isn't working, tbf she has a phobia of vomiting which I think is what is making it so difficult

xSilverandcoldx · 21/02/2025 19:53

I heard back from my daughter's ADHD nurse today, and they are going to start her on Intuniv hopefully in the next couple of weeks. She has discussed with the paediatrician and they think this is a better first choice for her rather than stimulants.

Anyone got experience of their child taking it or advice? I know a few people who have used stimulants but no one with non-stimulants.

Just waiting for an appointment for going in to clinic for height, weight etc next week.

LoveMyADHD · 22/02/2025 20:57

xSilverandcoldx · 21/02/2025 19:53

I heard back from my daughter's ADHD nurse today, and they are going to start her on Intuniv hopefully in the next couple of weeks. She has discussed with the paediatrician and they think this is a better first choice for her rather than stimulants.

Anyone got experience of their child taking it or advice? I know a few people who have used stimulants but no one with non-stimulants.

Just waiting for an appointment for going in to clinic for height, weight etc next week.

Yes DS12 was on 2mg for about 9 months and we stopped two months ago as we ve been exploring some other medical routes (Pandas related ) so had to come off

Big mistake ! OCD and hyperactivity flared up , I hadn’t realised how amazing Intuniv was

just restarted last week on 1mg

make sure you take away from fatty foods (I wake him up around 11pm to give on empty stomach)

xSilverandcoldx · 22/02/2025 21:32

That's a good tip about not taking tablets with fatty foods, thanks @LoveMyADHD glad to hear it's been helpful for your ds.

impossibleimposter · 23/02/2025 10:53

Sorry haven’t checked in for a while, just catching up.

So DS is still on the short release at the moment, 10mg Tranquilyn. Wow, what a difference it really does make. The difference is really subtle…until there’s a few days where he doesn’t take it! We’ve had the best feedback ever at parents’ evening recently, the first time DS has been called “a pleasure to have in class”.

We have a call with his doctor next week and I imagine the plan will be to switch him to slow release on this same dose, but I’m wondering if we will be allowed to stay on quick release? It makes enough of a difference to us, and hasn’t affected appetite or sleep so far so it’s really doing us the world of good as a family and for DS (although he says he feels the same “just normal”!).

LoveMyADHD · 23/02/2025 21:05

impossibleimposter · 23/02/2025 10:53

Sorry haven’t checked in for a while, just catching up.

So DS is still on the short release at the moment, 10mg Tranquilyn. Wow, what a difference it really does make. The difference is really subtle…until there’s a few days where he doesn’t take it! We’ve had the best feedback ever at parents’ evening recently, the first time DS has been called “a pleasure to have in class”.

We have a call with his doctor next week and I imagine the plan will be to switch him to slow release on this same dose, but I’m wondering if we will be allowed to stay on quick release? It makes enough of a difference to us, and hasn’t affected appetite or sleep so far so it’s really doing us the world of good as a family and for DS (although he says he feels the same “just normal”!).

Yes you’re allowed to stay on short release
we ve been on short release for quite a while (twice a day!)

feels amazing to have comments like this well done !

macap · 24/02/2025 10:37

dimples76 · 14/02/2025 15:07

@Mrburnshound we have been practicing with tic tacs and a normal straw. No luck with DS yet but DD5 who did not manage to swallow a tic tac when drinking straight from a glass can do it with a straw. I think with DS it is probably a sensory/anxiety issue (he also has Autism). I have ordered a medi + straw - it has not arrived yet and I am not overly optimistic but will update you when it does. I was all looking a special bottle tops and cups but they're all from the US and the cost/delivery charges were too much

Where did you order the media straw from please? I'm thinking of one for DD but like you say they're all from America!

Do we now have a UK equivalent?

Mrburnshound · 24/02/2025 17:52

@impossibleimposter yey wonderful news well done DS!

I had to check you wrote that post as we have just started 2 x 5mg tranquilyn IR and on day 2 having amazing results!

Zombie ness completely gone - and in fact i realised it was because we were opening the capsule, when ds swallowed the XL one he wasnt zombie.

Tranquilyn much smaller so easier to swallow. I understand there is still a taste to them (ds likes to leave them on his tongue and then gets upset that its salty), still need to work on swallowing easily every time

dimples76 · 24/02/2025 19:48

@macap in the end I didn't. The American company contacted me saying that shipping had not been calculated properly and that they had cancelled my order and requested that I order again. However, we saw the psychiatrist on Friday and he has now prescribed atomoxetine in capsule form (previously had liquid form which DS would not take). So for now we're okay as I can open capsules and mix into a spoon of yoghurt/puree. We're going to keep practicing with the tic tacs though...

Mrburnshound · 25/02/2025 11:46

I used melatonin last night and it worked so well.

Im going to order some magnesuim gummies too

Mrburnshound · 25/02/2025 11:55

Edit - my post is unhidden!

macap · 25/02/2025 16:08

Just in case anyone else's DC are struggling to take pills, my friend recommended something called Gloup to me, it's like a flavoured gel which lubricates the tablet/throat so it slides down easy. Available on amazon.

Going to try DD with it tomorrow, unsuccessful today unfortunately.

dimples76 · 25/02/2025 17:57

Good luck @macap, let us know how you get on

LoveMyADHD · 26/02/2025 08:47

dimples76 · 24/02/2025 19:48

@macap in the end I didn't. The American company contacted me saying that shipping had not been calculated properly and that they had cancelled my order and requested that I order again. However, we saw the psychiatrist on Friday and he has now prescribed atomoxetine in capsule form (previously had liquid form which DS would not take). So for now we're okay as I can open capsules and mix into a spoon of yoghurt/puree. We're going to keep practicing with the tic tacs though...

is that Strattera? Please let us know how he gets on, this is next on our list!

dimples76 · 26/02/2025 10:43

Yes, @LoveMyADHD the liquid version is Strattera. The capsules are not branded like that. Will let you know how we go but we are only on 10mg this week, upping to 30mg next week. He is taking it without much complaint so that is progress for us

LoveMyADHD · 26/02/2025 10:46

@dimples76 good luck!
pls can I check is DS having any OCD or anxiety at all?

I heard strattera can make it worse?! Did your doc comment on this at all?

GG1986 · 26/02/2025 12:43

Does anyone's child take medikinet and also suffer with tics? Did you find the meds made the tics worse?