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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

OP posts:
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MissHavershamReturns · 04/03/2025 06:49

@macap so sorry to hear of the ongoing difficulties with taking the meds. Sending lots of support your way.

OP posts:
impossibleimposter · 05/03/2025 18:44

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

Hi @Mrburnshound thank you and good news for you too! Does your DS take 5mg x 2 at once? Is it the slow/quick release?

Thankfully my DS is fine with taking tablets, he’s had ongoing constipation for a while and at one point did a transit study and the size of the capsules he had to swallow was crazy, so I think he’s pretty immune to that sort of thing. To be fair to him this is the sort of thing he’s never been challenging with - what feels like “normal” things for kids to struggle with, he just shrugs off no big deal!

Our appointment was cancelled so still waiting for his next review.

Mrburnshound · 06/03/2025 14:48

He's taking
5mg 8am
5gm 12pm
5mg 2pm

ir

Although school said it is still a bit of wprk to get him engaged so more experimenting needed!

macap · 06/03/2025 20:32

MissHavershamReturns · 04/03/2025 06:49

@macap so sorry to hear of the ongoing difficulties with taking the meds. Sending lots of support your way.

Thank you, just paid for new prescription!

Has anyone tried the medikinet IR?

CoffeeCakeAndALattePlease · 08/03/2025 19:18

I think we’re going to have to go back to the Dr for review.

DC started on Equasym XL 10mg which was immediately very effective. After a few weeks it became less effective so upped to 20mg.

But DS has lost has sunny disposition, he is just so so angry all the time now. It’s horrid for everyone and I can only assume it’s horrid for him. He’s also gurning more…. I’m thinking either slightly too high a dose, or need to try an alternative med.

anyone else had a bit personality change on Equasym?

Treeinthesky · 08/03/2025 19:38

macap · 06/03/2025 20:32

Thank you, just paid for new prescription!

Has anyone tried the medikinet IR?

I've taken it its 50/50 I hated it made me sick and head aches. But didn't last the full 8 hours and when it did the dose was 2 high and made me sick. Hopefully you find a good balance x

Treeinthesky · 08/03/2025 19:39

CoffeeCakeAndALattePlease · 08/03/2025 19:18

I think we’re going to have to go back to the Dr for review.

DC started on Equasym XL 10mg which was immediately very effective. After a few weeks it became less effective so upped to 20mg.

But DS has lost has sunny disposition, he is just so so angry all the time now. It’s horrid for everyone and I can only assume it’s horrid for him. He’s also gurning more…. I’m thinking either slightly too high a dose, or need to try an alternative med.

anyone else had a bit personality change on Equasym?

Ask for concerta it's 22 release in morning and rest afternoon my dd has her sparkle back x

CoffeeCakeAndALattePlease · 08/03/2025 19:42

Treeinthesky · 08/03/2025 19:39

Ask for concerta it's 22 release in morning and rest afternoon my dd has her sparkle back x

Thanks, I’ll mention that.

Treeinthesky · 08/03/2025 19:43

Can I ask other adhd parents. When did your child stop bed wetting. I'm told by enuresis clinic it's very common in adhd children. But dd has to take bed wetting tablets as well as her concerta alongside circadin. She's 10 if she misses the tabs she bed wets anyone else been through this

Treeinthesky · 08/03/2025 19:44

CoffeeCakeAndALattePlease · 08/03/2025 19:42

Thanks, I’ll mention that.

Chemist4u and pharmacy4u have the stock as well (online chemist) so ignore them when they say not in stock as it is!

Mrburnshound · 08/03/2025 19:52

Can you chew concerta?

ds always crunches his on the way down!

Treeinthesky · 08/03/2025 20:09

No the 36mg though is only small and it's hard x

Mrburnshound · 08/03/2025 20:46

Ah is there any chance you could upload a pic?

Ds takes 5mg in hard pill form and it still gets a big crunch on the way down, i see medikinet tells you not to do that so hes on tranquilyn til i can teach him not to!

Treeinthesky · 08/03/2025 20:55

Mrburnshound · 08/03/2025 20:46

Ah is there any chance you could upload a pic?

Ds takes 5mg in hard pill form and it still gets a big crunch on the way down, i see medikinet tells you not to do that so hes on tranquilyn til i can teach him not to!

36mg

Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others
MissHavershamReturns · 09/03/2025 07:11

@Treeinthesky mine was very late with toilet training but then dry at 6. I personally believe I have ADHD (and need to get on with an adult diagnosis) and I was a bed wetter and grew out of it eventually. It runs in my family along with the ADHD! We also know a friend’s locally who was still wetting at about 10 and using medication for this. They also have ADHD.

OP posts:
LoveMyADHD · 09/03/2025 10:56

Mrburnshound · 08/03/2025 19:52

Can you chew concerta?

ds always crunches his on the way down!

Sadly if you chew any long release pills, they release early so they’re ineffective in just few hours …

AllGonePeteTong1 · 09/03/2025 21:48

Can anyone help? We were day 7 of Meflynate yesterday and my DD experienced really bad stomach cramps. Before that, on Friday she had to come home from school as she had a stomach ache and the day before that she was an emotional wreck. Her sensory issues have become much worse and the meltdowns are awful. Do we stop the medication? I contacted her prescriber who said that she would have to go on non-stimulants, but I wonder whether a different brand might be more effective? And a different dose? I'm really confused!

Neurospicythree · 09/03/2025 23:04

Hi everyone! Been a while… DS7 is a few months into methylphenidate, now on to 20mgXL. Huge improvement and minimal side effects which is great. Still some challenging behaviours at school but think may be due to his autism. Anyway. He seems to really struggle at school on a Monday and wondering whether this could be due to having a day / sometimes both days off meds at the weekends. Has anyone else had this?

impossibleimposter · 10/03/2025 18:23

Hmm so after raving about the 10mg quick release Tranquilyn, it seems to just…not work any more? Or not work as well? Is this normal? It’s been about 6 weeks since he’s been taking it. The main benefit had been it seeemed to get rid of/hugely dampen down his defiance. Not so much now, and he’s really manic still a lot of the time, in your face silly-aggression (which is how he always is, unmedicated!).

Medicine review on Wednesday so I’d like to see if we can change.

OhCrumbsWhereNow · 10/03/2025 19:24

impossibleimposter · 10/03/2025 18:23

Hmm so after raving about the 10mg quick release Tranquilyn, it seems to just…not work any more? Or not work as well? Is this normal? It’s been about 6 weeks since he’s been taking it. The main benefit had been it seeemed to get rid of/hugely dampen down his defiance. Not so much now, and he’s really manic still a lot of the time, in your face silly-aggression (which is how he always is, unmedicated!).

Medicine review on Wednesday so I’d like to see if we can change.

Yep.

We had the same. Now she's gone through 10mg XR, 20mg XR till we seem settled on 30mg XR Equasym and the 10mg IR Tranquilyn is just for top ups.

impossibleimposter · 10/03/2025 19:40

Thank you @OhCrumbsWhereNow . It’s a good thing his appointment 2 weeks ago was cancelled then to be honest as otherwise we would’ve said happy to stick at the 10mg Tranquilyn.

We started on 5mg, did you go straight from 10 to 20? Wondering if they’ll give us 15mg first.

OhCrumbsWhereNow · 10/03/2025 20:04

impossibleimposter · 10/03/2025 19:40

Thank you @OhCrumbsWhereNow . It’s a good thing his appointment 2 weeks ago was cancelled then to be honest as otherwise we would’ve said happy to stick at the 10mg Tranquilyn.

We started on 5mg, did you go straight from 10 to 20? Wondering if they’ll give us 15mg first.

I don't think it comes in 15mg?

But XR works differently.

Best to see what they recommend.

impossibleimposter · 11/03/2025 15:19

Oh I assumed it would as it came in 5s but good point! DH (also ADHD and asking thought out questions not in his main skill set!) is taking him to the appointment so I’m a bit nervous that I won’t be there, I have to admit.

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

LoveMyADHD · 12/03/2025 14:31

impossibleimposter · 10/03/2025 18:23

Hmm so after raving about the 10mg quick release Tranquilyn, it seems to just…not work any more? Or not work as well? Is this normal? It’s been about 6 weeks since he’s been taking it. The main benefit had been it seeemed to get rid of/hugely dampen down his defiance. Not so much now, and he’s really manic still a lot of the time, in your face silly-aggression (which is how he always is, unmedicated!).

Medicine review on Wednesday so I’d like to see if we can change.

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)