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!

Yes Medikinet is slow release too but this is very different type hence my question

the doc is probably cautious, but these things either work or not

the only thing that can mess up things is if her body gets used to it too quickly but that’s why we have breaks

sounds amazing tbh!

Good Morning my ds is poorly so has had quite a bit of paracetamol and ibuprofen but adamant he wants to go to school today as he says sleep made him feel better. We are trialing medikinet and just about to move up to 20mg. he didn’t have it yesterday as was off school but wonder if it’s advisable to give it to him again today with the increased dose or if it will mess with him if he will take paracetamol later?

Hi@Whereisthesunny sorry for missing this post. I have asked our consultant about this and we’ve been told that with Medikinet at least ds should continue to have it when ill with normal viral cough cold fever type things but not if “seriously unwell”. I don’t give if he has sickness bug but otherwise unless on a med break I give if he’s unwell as I would if well.

@Whereisthesunny forgot to mention we’ve been told calpol no issue but I always leave half an hour between taking - not sure if this helps or not!

Thank you@MissHavershamReturns i didn’t give to this when he was off sick as it makes him very alert and i didn’t think it would aid his rest at home.
Also we don’t give it to him during the weekend. What does everyone else do?

@Whereisthesunny advice on whether to give at the weekend seems to vary a lot between consultants from the different advice people on this thread have had. Mine struggled a lot with mental health and was in a crisis situation when he started meds towards the end of primary. The advice for us was to give at all weekends to keep him stable on them. We still give at weekends now and did trial not doing so but found Mondays were then much more difficult for him.

We take big breaks in school holidays now instead. This summer I have totally geared timing of childcare and my work time off to be able to take him off for most of the summer, as he can’t cope with tennis camp etc etc unless medicated.

Interesting you mention he’s very alert! We find this too with ds - much more alert but actually weirdly almost more calm so in his case oddly easier for him to relax on meds.

Thank you for this yes my ds struggles with half terms as in he looks forward to not being at school but he finds the large amount of unstructured times daunting. Now that he is older he just arranges to go out with friends and so a bit easier.
I have also noticed the same effect as in he seems very alert but not jumping out of his skin excited. I don’t really know how he is during the day though so waiting to get some feedback from school but he comes home quite contained. The other side effect is taking longer to wind down in the evening and is going to bed closer to 10 as opposed to 9. I have a feeling that the 8 hour effectiveness can vary and in his case it’s more of a 10 hour hence i don’t feel it’s great for him to have at the weekends as breakfast is always slightly later

@Whereisthesunny yes the breakfast thing is tricky for us at the weekends! Because of ds’s meds we all do breakfast at the same time as during the week. Its annoying but it’s the only way for us to make meds work as we also have to fit in a top up, which we can’t give too close to the initial dose and can’t give too late to keep sleep good!

we are on week2 of medikinet 20 mg but really not sure if there is any improvement in ds. he does not take it over the weekend and i only see him for about 40 min after he takes it in the morning. I don’t see much cha he in him. He tells me he still shouts out at school. i haven’t had much feedback from them yet but i was expecting to see improvement as i feel his adhd isn’t that severe. Is there a possible if it hasn’t made a change in him, it’s maybe not adhd but more like anxiety/odd?

Hi @Whereisthesunny I think you'll only find out by talking to the teachers!

I think the dosage required has more to do with a child's metabolism than with the severity of their ADHD though.

My son also has 'moderate' ADHD and school really didn't notice a huge difference in him on 20mg. He's now on 30mg.

I'd also give it time. Even if school aren't seeing a huge, night vs day change on medication, the cumulative impact of just a bit more focus every day can be huge. He might still be calling out, but it's possible he's calling out less.

We had a lot of calling out too. At 10 and 20 school saw no improvement, but at 30 they saw a big difference. Definitely worth hanging on in there.

Thank you both. Can i ask how quickly you moved from 20 to 30mg?
He has a month worth of 20mg but i worry that by the time he finishes 20 there won’t be time to see if 30 works as school will break up for summer. considering we moved from 10 to 20 after 7 days would it be ok to move from 20 to 30 after 2 weeks?
Also ds seem to think he should try the 30/70 release as he feels he is much better in the morning and things go downhill in the afternoon. We are with a private practice so i need to contact her again and report back with how things go

We did it very slowly - took 6 months to go 10, 20, 30 but ds was in a very bad place and also autistic so the decision was to go very slowly.

There seems to be a bit of a difference in how long they take to settle in them - I like to change dosage in the holidays as DS can be very unsettled. We had the until appt and meds in October and over 5 months titrated up to 30 which was amazing to the following July where he had a horrible period of dysregyaltion and issues lasting to Christmas. During that we went up to 40, and he had 6 therapy sessions to aim to help with his self esteem which was very low.

Actually since May half term I've gone back down to 30 mg and he's in a better place. 40 felt too much and he was withdrawn some days, this seems better at the minute.

My DS is better on Ewuasym XL than Medikinet XL, we know as we've often got to chop and change due to med shortages.

Are you planning to carry on through the summer? I might be tempted to go that month on the 20 as 2 weeks isn't a great deal of time in our experience to see the difference - and then if needed try 30.

Thank you. He is quite difficult in the mornings and again when he comes back from school. He is not keen on taking it during the weekend but i feel summer would be too long to go without when we are just trialling things

Is anyone on a 12 hour slow release and not affected going to sleep? we are suggested this as next step as while medikinet XL 8hr works well at school , ds is very difficult once he is at home all the way until he goes to bed. I’m worried the 12 hr one will affect his bedtime

I am personally trying to delay as much as possible ; this will impact brain even more, sleep, food etc so trying to hold back till he’s 14/15

how old is DS?

we all have issues sadly due to rebound not much you can do unless you give a top up around 2-3pm which seems to work for some x

We've just been in the normal release, as time has gone on he's been less difficult in the evening and just bouncy/loud but not hard to deal with. Hope things settle down for you

thanks @LoveMyADHD @HauntedPencil He is 12 and pretty full on/loud when he gets back from school which results him getting into fights with sibling and he is still very alert/ confrontational around bedtime. He won’t take meds during the weekend as he doesn’t feel he needs so we haven’t actually seen how it affects him apart from the rebound but school has reported improvement.
I was told we can try a 4 hr one to top up at 4 30 but he isn’t back from school until later so that wouldn’t work.
I tried to discuss with him taking the 12 hr one to make home a bit smoother but he doesn’t see any issue with his behaviour after school play Dr said there is a national shortage of the 12 hour adhd meds so we would have to use whatever we can get ours hands on which could be different each time.
So far it hasn’t affected his hunger as he seems to eat lunch and good size dinner but i guess only time will tell if he loses any weight which he shouldn’t as already underweight.
Half of me just wants to stick with the meds that works for him at school and put up with how being difficult but other thinks there might something else available where we could have both world working but maybe that’s too ambitious

It might be too ambitious, sadly we can’t turn away from ADHD it’s 24x7, it ll always be there and the more we medicate the more his body will be impacted one way or another. Tbh it’s surprising his appetite is not impacted, I do wonder if it does have a true effect on him

either way I would consider a top up though in the afternoon

also look into guanfacine, non stimulant daily medication and has calmed down ds massively

By the 12 hours one is that the XL? Generally there had been Medikinet every month, it seems to be the Equasym which lacks, which is the one we prefer. Its a right pai ljt through between the pharmacy ordering alternatives the script has to be exact so needs re-doing each time as they are controlled drugs.

My DS has always had sleep issues - they aren't particularly worse now but he really does struggle

thanks @HauntedPencil i think she meant the medikinet 12hr one. have you ever been on the 8hr one and loved to the 12? Side effects any worse?