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!

Thank you so much MissH it's v kind of you to share and so great your DS is thriving. I am hoping mine will be happier and calmer being his autistic self, main aim is to give him a chance of staying in MS as he is really clever but his impulsivity in class is meaning his learning has become really impeded. Will keep in touch x

Following.

Y1 teacher thinks our DS5 has ADHD. We’re trying to get our heads around it and work out next steps.

Hi all, when I last spoke on this thread my ds 6 yrs was starting medikinet. He became very agitated and sometimes physical, which we'd not seen before. School reported the same and he also hurt some peers which was upsetting.
We are now on elvanse 20mg and what a difference. He is almost hyper focused, school report a positive reaction to the new meds. Obviously he is still himself and he still has his moments but this has been positive so far.
I will say, the half hour after he's taken it, is upsetting to watch. It's like throwing a bouncy ball as hard as you can in an empty room. So I have to ensure we have enough time after taking the med for him to reach a calm level in time for school. I'd be interested if anyone else has experienced this and has any tips. I encourage him to use his wobble board and that seems to work.

Coming back for a quick update (as a mostly-lurker on this thread I've really appreciated reading updates!).

DD started Medikinet XL at 10mg. Got permission to up the dose to 20mg once it became clear she doesn't have any significant side effects (maybe none at all except minor stomach issue but that could easily be separate). She only takes it on school days and didn't over half-term.

We are definitely noticing a difference. Today she came home and told me proudly she had focused "like I'm almost a totally different person" and produced four pages of work without looking up.

But that the effects seem to wear off around lunch. So probably some more fine tuning to do.

Working through some anger issues at school for their refusal to refer her to CAMHS when I first asked for help in Y7. It's Y9 now. We're due a meeting in which I fully expect school to try to dismiss her new dx because we had to go private (2.8 years on the CAMHS waiting list in my area). But the fact that the meds seem to be making a difference is just such a relief that I had to blink back tears a few times while writing this post.

@Scattery that sounds like really good results for the medication so far. Hopefully the specialist treating may suggest something to resolve the medication wearing off issue. I love that she felt she was a completely different person - that’s very powerful isn’t it?!

@TinselTarTars that sounds like a huge impact from elvanse and really glad to hear of the improvement. I’m sorry to hear about the half hour going wild effect though - we don’t see that here but there may be others here who have experienced it and can advise. We do have an excitable period both before and after it’s taken and until it’s kicked in and we find walking to school is absolutely essential to keep ds calm and in the right frame of mind for the start of school. How are things now?

@Neurospicythree how are things with you now?

@jumpintheline welcome to the thread and if you have any specific questions please do feel free to ask. I may not know the answer to all of them myself but hopefully someone here will!

Thank you. We are early days, finding our way. Reception flagged concerns but the SENCO felt no action required. Now he's made the step up to Y1 the differences are more obvious. We can see it at home too - can't keep still, constantly moving, very little impulse control, talks over us all the time, can't do turn taking, fuelled by an inner energy that I can't seem to ever get to the bottom of. Also reading on here there are other things, like his handwriting is poor - that I hadn't realised could be ADHD related but now am wondering.

Anyway - SENCO has referred us to the Child Development Team. Apparently you can expect your first appointment in 10 months... We are in Enfield if anyone can relate or has experience. We are also looking at private assessment - I'll likely post a thread asking for advice on that.

Hi all, joining the thread as we've just started on meds for 12yo DS who was dx with ADHD and ASD in Feb.

He was given 10mg methylphenidate (Tranquilyn), short-release, which we give at breakfast.

Today was day 4 and so far we haven't noticed any difference other than it's taking him longer to fall asleep at night (even with melatonin).

Is it possible this medication is having no effect? I ask DS if he feels like he can focus better at school and he says nothing has changed. Should I get back in touch with CAMHS and ask them to change it? Our next appointment isn't until December.

Hey @MissHavershamReturns thanks for checking in. We are day 6 on the 10mg methylphenidate long release and no major effects - thankfully no awful side effects but no positive effects yet either. We'll be due a check in with the doc next week so whether he will increase or not then I am not sure - v happy for him to be taking it low and slow for now DS his little body can get used to it if possible.

Hello @chillberry. I am surprised your next appt isn't until December. My DS (6) has only just started too, he's on 10mg long release, and the Dr said this was very much a starting dose to be increased during the titration process to get to the optimum level of positive effects with minimal side effects. We've also seen little effect on 10mg so thinking we will be going up to next level soon. Can you check in with your Dr?

Hello all. Jumping back on to say we're switching from Medikinet to Elvanse as my DS said it wasn't helping with focus/concentration. School said he was more alert and his concentration was better but we got to 40mg of the Medikinet and he still felt it didn't help and he didn't want to keep taking it. We started this week (but first week back after half-term is always hard so will give it a few days!)

Hi Everyone, first post but I’ve read almost every post on this and previous threads and it has been so valuable.

My situation is similar to many others, DS6 diagnosed at start of the year. Originally we were reluctant to start medication, it’s hard to explain exactly why but the Stigmatisation around it such as shouldn’t drug kids, turn into zombie, stunt growth etc is something I’ve had to work through to get to this point. Some of our family members are not supportive of our decision which makes me doubt myself.

My sons adhd is ultimately limiting him in so many ways as he’s getting further and further behind his peers at school, he struggles to make any friends and he can’t go to any clubs as he’s too demanding so feel like we owe it to him to at least try the medication.

He has been prescribed Medikinet XL, 10mg for 7 days then increasing to 20mg. I knew we were likely to be recommended to start on this one from the thread, I raised some of my concerns with the prescriber as it’s clear this type doesn’t agree with some children but she assured me it’s the best starting choice as works for majority and if it doesn’t we can go from there to other options so I’m trying to keep open minded and trust the process.

DS took first tablet this morning, bit of an ordeal getting him to swallow it, he bit into it on the first try by mistake but I checked and none of the little balls were pierced so I put the whole capsules with a spoon of yoghurt and he swallowed it on second attempt. I think will go straight for the yoghurt tomorrow. I did have to bribe him with a you tube episode so need to remember to allow adequate time for this on school days.

i was watching him like a hawk and probably over analysing things but on the whole after about 30mins he started going haywire, talking insanely loud, jumping up on the sofa etc which lasted about 15 mins and then that passed and he had a settled day until about 3pm so 6 hours when I noticed his “normal” traits returning.

He has always had a small appetite so I’m worried about this but he actually ate more than normal for him as usual lunch then he was starving this evening and had a larger dinner than usual.

In terms of negative effects he was slightly flush all day, not a temperature but feeling warm, not sure if it’s related or could be coming down with a cold or something. Also for a period of around 30 mins he was blinking excessively and said he couldn’t control his eyes but like I said I was watching him so closely might be overstating this. I have the medication guide for the ADDitude side and there’s a medication tracker in there so noting it all down as our review isn’t for another two weeks and I know I won’t be able to remember.

This message has turned out way longer than planned so thanks to anyone who is still reading! I’ve got so much insight and comfort from all the posts and makes me feel less alone as I don’t have anyone in real life to discuss with so thanks to everyone for sharing. I’ll post an update later in the week.

I spoke with our camhs prescriber the other day and they suggested adding the 10mg afternoon dose after one week instead of after two weeks, as we've not seen any noticeable effect from the short release 10mg tranquilyn. So we'll give DS the pm dose today and see if we see any change and then, of all ok, school will start giving him the second dose at lunchtime.

Prescriber suggested we could switch to the long release in a few weeks if DS still not responding; or if the afternoon dose badly affects his sleep we could try giving 20mg short release in the morning. I guess there are lots of options. One step at a time, right?

@chillberry we use a top up although ours is for medikinet XL so the long lasting version, but the top up has really helped ds. I hope it helps you too. So many different options and it takes time to get the mediation right, but lots of people do find it is good, so fingers crossed for you.

@SquashSqueezee I can really relate to a lot of what you’ve written. It is a VERY tough decision to medicate and we found it really difficult to get our heads around at first. BUT the difference it has made to my ds is just huge and he’s so much better now - it will be three years in Feb that we started and I would definitely do the same again. I would try really hard to trust your consultant and not to be swayed by what meds work for which children. The meds book I have linked in the op makes it really clear that all meds work better for some kids than others, but they have to start prescribing somewhere! My ds has done brilliantly on medikinet XL and we are still on that over 2.5 years on.

@MissHavershamReturns what dose is your son on. We are on equsym xl 20mg for my 11 year old son and wonder whether we need to go up a bit? Problem is it really suppresses his appetite.

@GC12345 we are on 40 mg in total, which is made up of 30 mg morning (medikinet xl) and a 10 mg lunchtime top up at 1 pm

We’ve also had the appetite issues @GC12345 but somehow we’ve overcome them and with a massive breakfast and extra meal before bedtime we are back on track with weight on this dose.

@CompluterSaysNo I hope you see good results on the Elvanse.

@Neurospicythree when are you expecting your next appointment to be? Hopefully they can move the dose up a bit if that’s appropriate.

@MissHavershamReturns thanks for your reply, I have the book ordered and it’s arriving tomorrow.

My husband is much more rational and less emotional about it which is helping balance my feelings out. Our prescribing nurse was really great at answering my queries and obviously explained it’s likely to involve at least some tweaking.

What I’ve noticed immediately is that it doesn’t last 8 hrs, we up the dose to 20mgs on Saturday so will see if this makes a difference. I’ve read the tips about adding protein to breakfast so I’m going to try this. One of our motivations for medication is for our ds to be able to participate in clubs that’s he’s asked to go to but can’t currently so I’m going to raise about a fast acting top up.

@MissHavershamReturns we struggle with breakfast as equsym xl must be taken 30 mins before.i wonder whether we would be better on medikinet xl as it can be taken after breakfast. It’s so hard knowing the best approach. We had to go private And the support just isn’t great, feels like it’s just about the money for the dr 😞

Thank you for starting this thread @MissHavershamReturns and thanks to everyone who has shared there journey!

I'd be grateful for some words of wisdom from MN

DS has switched to Elvanse this week (after reporting that Medikinet didn't help with focus). He has been extremely emotional and tired in the evenings after school. He is autistic as well as ADHD so struggles to communicate feelings.

Not sure whether to persevere, to try and switch again, or to give up.

DS is always well behaved at home but becomes anxious at school about getting things wrong. Also struggles with organisation and sequencing things. Certain lessons (like food technology where he has to follow recipes) are extremely stressful.

School is very supportive and he has a pass to leave class if overwhelmed but we hoped that ADHD medication would help him focus and manage instructions.

We found that the after-school come-down seems to last about 3 weeks after a dosage change, and then gradually level out. If there's something she needs to be on form for, we add a 10mg instant and that helps level things out.

Always joyous being the parent - I have said to the psychiatrist that school get medicated DD who is rational and focused and likeable. I get unmedicated weekend and evening DD who is an argumentative, emotional mess. Happily I will love and adore her regardless, but sometimes I really envy school!

Couldn't agree harder with your second paragraph!

Checking in, we are still noticing an increase of focus and sustained attention on elvanse. Appetite has decreased but not noticeable during latest weight check. Emotions are sky high and can be so unpredictable, but almost manipulative...I feel awful saying that.
For example, he decided he wanted to move seats at dinner time, everyone was eating so said no. He screamed blue murder, never heard a noise like it. In-between this he is shouting when you move ill stop screaming, it's hard because we're trying to balance a household with other siblings in and actually teaching DS that's not how we get things and how to deal with situations age appropriately. Some days are draining, but some are so rewarding.
We are medicating at the weekend too now.

@TinselTarTars my son does exactly the same at meal times. I feel he almost knows how to play us, it’s so hard trying to keep the peace. Grandma came over Sunday and he refused to eat at the table and would only sit at the island on his own. Threatened not to eat knowing he needs to eat as his appetite is suppressed in the day due to his medication. His behaviour is good at school but awful at home. He’s so rude even with the medication. It’s so hard