Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

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!

I think the only 12hour one of this type is the Concerta one which is usually for teens

some good info on durations https://www.nottsapc.nhs.uk/media/143jmmkm/adhd-methylphenidate-information-sheet.pdf

Thanks for this @LoveMyADHD. That description is a bit of a minefield. I have emailed his consultant and wait to see what she recommends

We wondered about moving to a longer acting one @Whereisthesunny but the consultant wanted to top up instead with a lunchtime dose. My son is also 12.

@MissHavershamReturns he is on the 8 hour one so his option was to give a 4 hour one at 4 30 so he can eat before but as he travels for school he isn’t back to till 4 45 so would be too late to eat then take another 4 hour one so instead she suggested he could take a 12hr one at 7am

@LoveMyADHD just had the prescription it’s the Concerta XL we have been prescribed for 12hr. I’m feeling a bit worried about swapping him over and what side effects this will have

You ll probably achieve the calmness he needs till bedtime but there might be overall bigger rebound next morning or when not on the pill , potential worse impact on appetite

if you think he definitely needs it ,you can trial it for a week perhaps?

i d probably go more for top ups rather than longer duration meds but some consultants (including mine) just go against top ups

@LoveMyADHD thanks. This was my question to the consultant about putting another dose on the 8hr one taking him up to 8-830 that when it wears off wouldn’t he have the same difficult behaviour but just later in the day?? Her response was by the time that dose wears off, he will be so tired that it would not be too bad.
What type of a top up do you mean? the one you give around 4? and why do you feel it would have less of a rebound than the 12hr release?

@Whereisthesunny as my lovely consultant says it’s 10000% trial and error and ultimately it depends on the child

for us rebound from slow release is just awful , it goes well into the next morning, it’s hundred times worse than core adhd

short release top ups for us have about 10% of the long release rebound; totally different

based on my own experience and on my consultant’s advice , I wouldn’t agree with your consultant (in terms of him getting too tired to show ill effect,)but these things are tricky to plan , you just have to try them out

@Whereisthesunny thank you. I get the trial and error.
Medikinet XL 8hr seem to be working as school have definitely seen an improvement but unfortunately we have seen a decline in his behaviour before and after school so that’s why we are trialling the 12 hour one.
What side effects does your son get?

Oh yes we definitely have a decline at home too

the minute I give long release , when it wears off his adhd is worse than if he was never treated ; impulsiveness and not listening to the max

just two weeks ago I posted on how amazing he was in half term (assuming due to us addressing some underlying thyroid issues ); because of this we had to lower the medication at school to 30mg but could only do this with long release (he was on equivalent 40mg short release before ). Straight away we saw massive regression when meds wearing off . He went from being a respectful quiet unmedicated child during half term, to absolute hell

for us long release has a hell of a rebound but.. if your goal is for him to improve at school and progress academically and with friendships , you might have to accept what’s happening at home. Also his brain needs a rest , for me personally 12hours is too much on the brain

interesting to see if Concerta works, otherwise perhaps have a think about a 3pm top up x

Thank you for this. Yes that’s what i have seen with Medikinet XL. Quite rude and aggressive when he comes home.
So are you both saying that giving a top in the afternoon you see less of a rebound once it wears off? i’m confused about as im reading that short release medications has worse side effects as opposed long ones 🤔

We give top up at lunchtime @Whereisthesunny

For us we now have no issues at all once med has worn off

No Crash at all - just usual unmedicated child stuff - hyperactive etc but nothing unmanageable

Yes for us @Whereisthesunny short release rebound much much better … similar to @MissHavershamReturns ‘s experience

Short release goes in and out faster; long release is lingering for much longer
you can always trial it out

how do you help your child understand that medication is beneficial. He understands that at school he needs it but hates having it during the weekend and i think it’s because it makes him quiet and he struggles to accept that he doesn’t always needs to be in the centre of the attention.
I made him take it yesterday and he just sat in his room all day and wouldn’t come out with us.
The reason i need him to take it while at home as he is so full on and permanently is picking fights with siblings and stops is a family do anything nice.
What do i do? i feel so sorry for him but at the same time i feel it’s important for him to understand that his behaviour affecting home life too not just school but he feels we are against him by making him calm.
Is there a possibility that the medication isn’t right for him as i thought that it actually make them feel good and less frazzled rather than lethargic.
He seems fine at school but perhaps as it’s a very controlled environment and it’s allowing him to behave the way they expect him to.

It's tricky finding the right balance. Mine I've just reduced cos I felt it was taking too much away personality wise and I only noticed that at the weekend, which is maybe another positive for taking it at the weekend

It’s so hard as he truly has a full of character personality but with this he can also be over the top and struggling with regulating his emotions so we have 2 choicey either to stick with only school time and carry on enduring the family struggles or give it to him every day and see my full of life child disappear

Out of curiosity, how do your children react to live shows such as theatre/panto/sports events etc? DS struggles at home with films or football games (despite wanting to watch the majority of them), usually gives up at some point. But if at a live show - even something I would have thought too ‘old’ for him such as An Inspecfor Calls (went for a sibling + gcse) he is transfixed by everything going on, even from the age of 2 when it seemed almost impossible to imagine taking him anywhere in public!

We’ve had to stop long acting stimulants as could not cope with rebound and sleep issues.
Ds is already in trouble at school. Seeing consultant next week. What’s the option?
Im devastated to his hasn’t worked well its did. what we needed at school but the rest was awful. 😞

Have you tried short acting?

we had awful rebound on long release and moved again to short release

No not yet i’m just really wary now and worry.
Im pretty sure that all online resources seem to say that long release should not have rebound/ side effect as bad as short release ones or am i reading wrong?

No way absolutely incorrect

my kid regresses back horribly due to rebound from long release

jt takes him a week during school holidays to resettle back to his normal self

short release rebound is nothing comparing to this (for us and possible others too). Defininiteky had to do with the kid. DS12 here absolutely doesn’t not agree with long release anymore

why don’t you try short release in the weekend?

We will. Just need to get it prescribed. Is there one more recommended than others?

We switched from long release as top
up to short release - comedown so much better! Appetite also better! Still do long term in morning (15mg Medikanet) and now 5mg top up (short release) when we were on 10mg long release.

Normal Medikinet is fine, I don’t think there is shortage on the short release

yes if you ask your consultant I am sure they ll prescribe .

like @Hels20 mentioned the comedown is so much easier

you can only try, and if it doesn’t work you can try out different medication x