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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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impossibleimposter · 12/03/2025 19:45

LoveMyADHD · 12/03/2025 14:31

sadly most kids create tolerance (brain is just getting used to it)

Are you having breaks in the weekend so that brain goes back to baseline?

we re doing weekend breaks but also we give Zinc daily (it potentates methylphenidate)

That’s really depressing. It was such a game changer for a few weeks. My DH still finds his just as effective.

We were having Sundays off to give DS the medication for the sports he plays on Saturday. Is it better to have two full days off?

We’ve now got 10mg Meflynate XL, so first try on slow release.

Anyone else tried this one?

LoveMyADHD · 13/03/2025 11:11

impossibleimposter · 12/03/2025 19:45

That’s really depressing. It was such a game changer for a few weeks. My DH still finds his just as effective.

We were having Sundays off to give DS the medication for the sports he plays on Saturday. Is it better to have two full days off?

We’ve now got 10mg Meflynate XL, so first try on slow release.

Anyone else tried this one?

Perhaps try Saturday off too

certain people build more tolerance than others , my kid is like this

also see if you’re giving high fat meal with it; high fat releases the pill too quickly

good luck with long release, for us it’s just metabolised too quick, it’d be good to see how you get on x

MissHavershamReturns · 14/03/2025 21:35

I know tolerance does happen and we’ve seen it too, but we’ve also definitely found big improvements after breaks - we had three weeks off this summer and that was a game changer.

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MissHavershamReturns · 15/03/2025 18:34

Just thinking tolerance through a bit more this afternoon. It is definitely out there and it seems that it does impact different individuals differently.

In our case ds had a day off meds ten days ago because he was unwell and feeling queasy so wasn’t eating and just thinking back he was so much louder and more hyperactive just like he was pre meds as he was without the meds even though he was ill! So I think this shows that the Medikinet XL is clearly still working really well for him even after 3 years consistently taking it with only breaks being in school hols. So there is hope of meds working even for long periods provided breaks are taken.

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Mrburnshound · 15/03/2025 19:06

Tolerance is a bit worrying. Ill ask the dr what he thinks in 2 weekz

Didnt give ds his 3rd dose today and he's being a bit irritating, so the stuff is clwarly working lol!

macap · 16/03/2025 10:00

Mrburnshound · 11/03/2025 17:09

Thanks @Treeinthesky
@LoveMyADHD ahhhh that explains our first foray into XR! Hes now on IR, but still crunching 😑

Annoying that DS is struggling to swallow, he can swallow but he's a bit scared of it. This really limits what he can have

DD10 is exactly the same, like she has mental block about swallowing.

we are on medikinet IR now and we crush that and put it in some juice.

AllGonePeteTong1 · 16/03/2025 21:29

Hi everyone, we've just started Concerta XL (18mg) after Meflynate caused stomach cramps. So far DD said she felt no different during the day, but had horrible meltdowns this evening. Is this a normal first day experience?

MissHavershamReturns · 16/03/2025 21:56

We had a lot of emotional dysregulation and rage in the first few days on methylphenidate slow release (medikinet XL for us) and then adding the top up sorted those and it also did reduce @AllGonePeteTong1 . I really hope tomorrow goes better for you.

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AllGonePeteTong1 · 16/03/2025 22:00

Thank you @MissHavershamReturns . It's hard not to feel despondent. She was no different doing her homework today - it was still as painful as ever, then she was an absolute mess this evening. But we'll persevere.

OhCrumbsWhereNow · 16/03/2025 22:11

We always have a horrible time in the evening for around 3-4 weeks... it slowly tapers off in terms of intensity.

(Always galling to read comments in newspapers about how we're all paying for diagnosis in order to stuff medication into our children to game the system, as everyone will get amazing grades on speed... if only they actually knew the realities).

LoveMyADHD · 16/03/2025 23:26

@AllGonePeteTong1 we had the worst rebound from concerta!!

not really in the evening as much but more in the weekend ! We’re talking psychotic behaviour no joke! I stopped straight away which was massive shame as it had good results

Hels20 · 17/03/2025 07:42

Concerta did nothing for us…had to go back to Medikanet XL….

yes @OhCrumbsWhereNow - v galling to read. These drugs are the only reason my son is still in education and can learn….

AllGonePeteTong1 · 17/03/2025 08:26

DD refused to even take her dose today.

dimples76 · 17/03/2025 10:23

@AllGonePeteTong1 we had terrible issues when Elvanse wore off. More explosive violence then ever before. I thought that maybe the doseage needed to be adjusted/combined with another drug but the psychiatrist advised switching to non-stimulant. DS is now on Strattera and we're not having the comedowns but he does seem very fatigued at present....It seems very hard to find the right approach to meds or even if there is one.

LoveMyADHD · 17/03/2025 10:52

dimples76 · 17/03/2025 10:23

@AllGonePeteTong1 we had terrible issues when Elvanse wore off. More explosive violence then ever before. I thought that maybe the doseage needed to be adjusted/combined with another drug but the psychiatrist advised switching to non-stimulant. DS is now on Strattera and we're not having the comedowns but he does seem very fatigued at present....It seems very hard to find the right approach to meds or even if there is one.

please can I ask have you seen any positives from strattera (At school and at home) ?

x

dimples76 · 17/03/2025 11:04

@LoveMyADHD It's a bit hard to tell to be honest. He has only been taking it for 3 weeks and I think the guidance is 4-8 weeks before it fully takes effect. Also his behaviour started to improve when he was not taking any meds.

It is a bit hard to unpick things as there have been a lot of changes for him in the last 6 months. In September he moved from mainstream primary with full time 1:1 support to specialist secondary In the Autumn term he was in 2 different classes, had 3 different class teachers and different taxi drivers. This term has been a lot more settled and he has started to really enjoy school. His teachers say that his behaviour at school has greatly improved but I think that it relates more to feeling more settled and safe at school. They have said that his attention span is still v poor. After school was a nightmare in the Autumn but this term it has generally been much better....don't want to jinx things!

LoveMyADHD · 17/03/2025 11:18

dimples76 · 17/03/2025 11:04

@LoveMyADHD It's a bit hard to tell to be honest. He has only been taking it for 3 weeks and I think the guidance is 4-8 weeks before it fully takes effect. Also his behaviour started to improve when he was not taking any meds.

It is a bit hard to unpick things as there have been a lot of changes for him in the last 6 months. In September he moved from mainstream primary with full time 1:1 support to specialist secondary In the Autumn term he was in 2 different classes, had 3 different class teachers and different taxi drivers. This term has been a lot more settled and he has started to really enjoy school. His teachers say that his behaviour at school has greatly improved but I think that it relates more to feeling more settled and safe at school. They have said that his attention span is still v poor. After school was a nightmare in the Autumn but this term it has generally been much better....don't want to jinx things!

I see .. I was hoping it’s something more obvious than that. We do seem to be having the odd regression on non medicated days and not sure if this is related to hormones etc

on the positive side your DS seems to be doing better overall which is fantastic !

on strattera are you supposed to have a review in 8 weeks ?

impossibleimposter · 17/03/2025 14:02

So we had two days off this weekend, DS started the 10mg Meflynate Xl on Thursday. DH thinks it made a difference Thursday to Friday, but I did the school morning this morning and I think it made no difference. DS was also a complete pain all yesterday afternoon/evening.

Don’t know how long to give it before giving up and increasing the dose (the ADHD nurse said we could ring anytime to try…)

pizzaonawednesday · 19/03/2025 19:00

DS15 started on equasym xl 2 weeks ago, 10mg, it's not even touched the sides 😖 he's combined type adhd diagnosed just after lockdown on starting secondary (primary school were waste of space < understatement!) but xh was anti-meds til recently.

CAMHS doubled his dose today - will this make any difference?? Please let it do!

dimples76 · 20/03/2025 05:50

@LoveMyADHD I am not sure about the reviews as my son also has learning disabilities and at the moment the LD nurse calls me once a fortnight. We saw the psychiatrist 3 weeks ago and our next appointment is at the start of May

SameyMcNameChange · 20/03/2025 18:58

Does anyone know what happens when kids turn 18? Who does reviews that have previously been done by the paediatrician? I don’t want a gap when DS is doing A levels…..

MissHavershamReturns · 21/03/2025 12:20

@SameyMcNameChange we have no experience as mine not in sixth form yet, but this report suggests it doesn’t go well everywhere as adult ADHD service is very patchy: https://njl-admin.nihr.ac.uk/document/download/2034796. njl-admin.nihr.ac.uk/document/download/2034796]]]]. Do you have an ADHD nurse at your clinic? If so it might be worth asking her how this works?

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OhCrumbsWhereNow · 21/03/2025 12:35

SameyMcNameChange · 20/03/2025 18:58

Does anyone know what happens when kids turn 18? Who does reviews that have previously been done by the paediatrician? I don’t want a gap when DS is doing A levels…..

We see the psychiatrist privately and he continues to see them post-18. Suspect probably until end of university but haven't actually asked when they stop.

MissHavershamReturns · 21/03/2025 16:14

@OhCrumbsWhereNow this is interesting thank you and is this done via shared care?

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OhCrumbsWhereNow · 21/03/2025 16:32

Yes - although we’ve only moved to shared care this year.

I’m hoping that we are easy enough that we can just drift along until DD is fully independent. She’s stable on her current dose. Only has ADHD (and dyslexia) but no ASD or anxiety or anything to complicate things.

She also has a shared interest with her consultant and I get the feeling he’s slightly intrigued by her future plans so suspect she’s not really a problem to keep on seeing!

No idea if there are rules about whether they can or not.