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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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changedmyname24 · 27/06/2025 17:28

Does anyone have a rough idea how long it would take before we see any effects of an increase? From 36 Xaggitin to 54, started new dose on Wednesday.

LoveMyADHD · 27/06/2025 18:04

for any stimulant it should be straight away (except for some weird side effects that might be hindering progress for first few days )

changedmyname24 · 27/06/2025 18:45

Ok, thanks. He has seemed a bit sharper, but I was hoping it would do more for focus. Never mind, he's no worse!

changedmyname24 · 27/06/2025 18:46

He also has epilepsy plus meds so I don't know if that affects anything.

LoveMyADHD · 27/06/2025 22:30

Oh that’s interesting I thought stimulants are not recommended for epilepsy

Hope they work out, perhaps increase dose or up his protein xx

changedmyname24 · 28/06/2025 12:53

We see & talk to his epilepsy consultant regularly & he has said it's fine to take ADHD meds & actually encouraged us to ask for an increased dosage. Epilepsy is quite a broad spectrum & unique to each patient, so I think they judge it on a case by case basis.

LoveMyADHD · 28/06/2025 15:19

changedmyname24 · 28/06/2025 12:53

We see & talk to his epilepsy consultant regularly & he has said it's fine to take ADHD meds & actually encouraged us to ask for an increased dosage. Epilepsy is quite a broad spectrum & unique to each patient, so I think they judge it on a case by case basis.

Ok good luck , adhd meds is a mind $*%^ really hope jt works out for you!

diningiswest · 01/07/2025 18:19

CoffeeCakeAndALattePlease · 03/06/2025 21:17

I’m thinking of asking the consultant if DS can try a non-stimulant in the afternoon as he crashes so badly at 3:30

we're trying to get school to trial after school club but I worry about him dysregulating there and struggling. He manages holiday club 9-5 ok but a school day is more tiring for him.

anyone’s DC have a slow release stimulant for the school day then a top up of some kind in the afternoon?

Yes, DD has been doing this for years. It's the only way to get homework done.

Mrburnshound · 02/07/2025 17:22

DS has started on dexamphetamine today - please wish us luck that this is the one 🙏🙏🙏

LoveMyADHD · 02/07/2025 17:29

Mrburnshound · 02/07/2025 17:22

DS has started on dexamphetamine today - please wish us luck that this is the one 🙏🙏🙏

Short release of Elvanse ?

wow!!! Please tell us how it went

we re on Elvanse , it’s been quite a difference at school !

how come you did the short release and not Elvanse?

Mrburnshound · 02/07/2025 20:39

I dont think it's elvanse as it just says "dexamfetamine sulfate". ds takes it twice a day

The mephlinidate was making DS very slow/brain fog hence why we are on this. The school noticed a lower output

I spoke to the teacher today and he wasn't sure of much difference but also they've been doing show prep and not normal work. Annoyingly he's moving schools in September so the new school won't be able to compare to his unmedicated state

LoveMyADHD · 02/07/2025 22:49

Mrburnshound · 02/07/2025 20:39

I dont think it's elvanse as it just says "dexamfetamine sulfate". ds takes it twice a day

The mephlinidate was making DS very slow/brain fog hence why we are on this. The school noticed a lower output

I spoke to the teacher today and he wasn't sure of much difference but also they've been doing show prep and not normal work. Annoyingly he's moving schools in September so the new school won't be able to compare to his unmedicated state

Yes I think it’s the Elvanse but in short acting form

if no effect you might need to increase - we had to increase twice

also there is funny timing with these meds, apparently it’s stronger when you take on empty stomach for 15mins and then high protein food x

Mrburnshound · 03/07/2025 10:01

Thank you, that's very interesting and I will make a note esp re the protein

DS was sick this morning, I initially thought it was a side effect but now he's sleeping on the sofa so thinking it might be a bug, I guess I'll know for sure if DD catches it too!

LoveMyADHD · 03/07/2025 16:35

Good luck! Let us know, don’t think anyone on this board has tried this x

Mrburnshound · 06/07/2025 19:37

So far no side effects, he seems pretty similar to the mephlinidate so I will as the school on Friday if he seems sharper this week.

dh thinks he is more on the ball than the last drug, i find it hard to tell but DH thinks he's more chatty.

After a very late night the first night he's been sleeping at his usual time although not back to the pre medication 7.30 (although he has turned 7 now, and the 5yo never slept at 7.30 anyway lol)

cooperbug · 06/07/2025 20:35

Does anyone else’s child have a huge rebound effect when their medication has worn off (medikinet 10mg)? It’s a while lot worse than what she was like beforehand more aggressive and hyper. Not sure whether to stop or change medication? She’s been on it just 2 weeks so far.

LoveMyADHD · 06/07/2025 20:38

Mrburnshound · 06/07/2025 19:37

So far no side effects, he seems pretty similar to the mephlinidate so I will as the school on Friday if he seems sharper this week.

dh thinks he is more on the ball than the last drug, i find it hard to tell but DH thinks he's more chatty.

After a very late night the first night he's been sleeping at his usual time although not back to the pre medication 7.30 (although he has turned 7 now, and the 5yo never slept at 7.30 anyway lol)

Does the consultant not wanting to give him Elvanse, the long release ?

these particular types have quite a strong effect so you might be on low dose ..

LoveMyADHD · 06/07/2025 20:39

cooperbug · 06/07/2025 20:35

Does anyone else’s child have a huge rebound effect when their medication has worn off (medikinet 10mg)? It’s a while lot worse than what she was like beforehand more aggressive and hyper. Not sure whether to stop or change medication? She’s been on it just 2 weeks so far.

Long release? Thats quite low dose

yes its well documented even on this board alone, we had lots of aggression and psychosis on Medikinet we had to change to Elvanse

cooperbug · 06/07/2025 20:45

she was started on slow release for the first week

but this is the prolonged release now. Prescriber has advised this is normal and will settle but it’s awful

cooperbug · 06/07/2025 20:47

she has both autism and adhd and we aren’t seeing many positive effects during the day so far on it. She is much quieter and anxious and more still so I suppose it’s shows up her autism traits more

LoveMyADHD · 06/07/2025 20:49

Personally I wouldn’t think it’d settle as these drugs don’t build up in the system they either work or not. Any side effects are not of this nature , that’s pretty bad

Im not a doctor though , my experience is just by my kid trying 5 different meds

personally I’d ask for different med, at a minimum you can try same substance but different mechanism (Equasym or Concerta)
or you can move to elvanse

cooperbug · 06/07/2025 21:06

Are equasym and concerta both methylphenidate too?

our prescriber makes it sound like we don’t have much choice in the matter and has suggested giving a 5mg top up of tranquilym at tea time to stop this awful rebound.

cooperbug · 06/07/2025 21:10

This is a minefield I just want to get this right for her.

LoveMyADHD · 06/07/2025 21:22

cooperbug · 06/07/2025 21:06

Are equasym and concerta both methylphenidate too?

our prescriber makes it sound like we don’t have much choice in the matter and has suggested giving a 5mg top up of tranquilym at tea time to stop this awful rebound.

Yes same substance but different delivery

first 4 hours Medikinet releases 50% where Equasym releases 30% and concerta 22%

we had awful side effects with concerta I won’t lie but it’s all experimental and worth trying, absolutely you have choices and your prescriber seems a bit clueless sorry

if all these don’t work you move to Elvanse (we re on this now )

the top up could work as well but if you’ve never seen anything positive then potentially that’s not for her

x

cooperbug · 06/07/2025 21:26

@LoveMyADHD how long does Medikinet typically stay in the system?

what is the benefit of the lower percentage release with the two alternatives?

Thanks for your advice. ADHD nurse is pretty clueless if I’m honest