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!

We've noticed the same with the rudeness towards us and shortness of temper. I'm planning to discuss it with his paediatrician during his review. We're sitting all the courses we can find but struggling with implementation of strategies come Friday after a full week of it. We have to remind each other we are only human.

Started 10mg tranquilyn a few days ago. We're seeing disruptions to sleep (even with melatonin it's taking him 2+ hrs to fall asleep), also a big drop in appetite -- seems like he's hardly eating and he's small for his age. Since last night he's also complaining of muscle pain. He says he doesn't see a difference in ability to focus at school, and we haven't noticed anything either, so it seems like only negative effects on this med so far (two weeks in). Any thoughts would be appreciated. Thanks.

Sorry, meant we've started a 10mg afternoon dose, so he's getting 10mg in the morning and 10mg in the afternoon.

@CompluterSaysNo I’m so sorry to hear early days on Elvanse have been proving hard. Our first week and a half in meds was very difficult and someone with much more experience wisely said to me on thread one to try not to overthink the first two weeks (while of course reporting everything to the medics concerned), because things can and do settle. How are things now?

@OhCrumbsWhereNow we also feel hard done by when we get the tricky evenings and school get full meds, so I hear you very much on this!! Although we do medicate at the weekends on the advice of the team prescribing for ds and this does seem to help as we don’t get the come downs at weekends, but we do have to make absolutely sure we do good chunky breaks in the holidays. So that could be something to consider, but I know there are advantages with having weekends as breaks too.

@TinselTarTars really glad to hear that you are still seeing improvements in concentration and focus - it’s always amazing when the meds work so well. Sending lots of support for the hard times.

@GC12345 I hear you very much on the private medicine. We’ve used a lot of private consultants for different things for our dc out of desperation really and it’s not then as though you get some kind of perfect super deluxe service.

@SquashSqueezee and @Neurospicythree how are things your side now? Sending lots of supportive thoughts your way.

@chillberry I think my ds has had tranquiln too as a top up at lunchtime. Is this an immediate release methylphenidate tablet of 10mg? We sometimes get Tranquilin and other ones too for the top up as exact brand depends on what pharmacist has in.

My ds was really all over the place when he started on the Medikinet XL. For the first week I remember saying to my Dm he can’t go back to school on this if he’s going to feel like this as he was really tearful, angry and also migraines, he even wet the bed overnight once which he hadn’t done for years.

As I just mentioned to a pp someone on the thread basically said to me that while it’s really hard in the early days things can settle, so I should report all side effects to the medical team, but not to overthink them at this early stage as they might be temporary. Some went away completely - no headaches now and no bedwetting ever since that one time. And for us a lot of the problems were resolved by adding this second lunchtime top up med prescribed by the team. However it did take time to get used to the top up as well. I’m sure you will report all issues to your medical team, but it might be that some will settle.

We had to make adjustments to the timing of the top up and he was originally prescribed it at 1.30 but is now having it around 12.45. What time is yours and do you think asking the medical team about moving it slightly earlier might be an option?

How are things now?

@MissHavershamReturns Yes, tranquilyn is an immediate release. DS was getting very bad muscle pain after a few pm doses at lunchtime and ended up missing two days of school bc he didn't feel well (though there may also have been an element of EBSA). He also was barely eating anything at all. I spoke to our prescriber who suggested removing the afternoon top up and reverting to just the morning dose.

We gave DS the weekend off meds so will try again tomorrow with just the morning 10mg. Prescriber said it might make sense to move to a modified release at next appointment given that so far (after two weeks) we're mainly seeing more negative side effects than positive effects.

Thanks for checking in @MissHavershamReturns - he has been calmer and happier this weekend (off meds) and we have a meds review Thursday. (Week 3). Helpful to hear that the side effects can settle. It's mainly been low mood, tiredness in the evenings, and struggling to sleep. If things don't settle this doesn't feel sustainable (even if the medication helps him work and concentrate at school). Thanks again, and thanks to everyone sharing their journey

Hi everyone. DS6 is are just in to week 3 of methylphenidate 10mg XL and having had a check in with the Dr last week we are going to be adding in a 5mg slow release in the morning. We have seen a few positive effects so far but could be better, no side effects as yet thankfully, amazingly. School are reintegrating him into the main Y2 class having had him in a SEN room for a bit as his behaviour was unsafe in the classroom, he is really keen to reintegrate as he loves learning and has been getting on well, but still room for improvement. Dr initially suggested moving to 20mg XL but I was keen to take it a bit slower (He's 25kg so 20mg is pretty much the max.) So we'll see how that goes next week.

I have actually struggled to get the 5mg instant release as the chemists say it's out of stock. One gave me their last 10 Tranquilyn 5mg but may not be able to get more. Another told me that if the Dr specifies Medikinet brand, rather than generic methylphenidate, they can get it, but won't if it's not specified as it's more expensive for them. Interesting / annoying! So I've asked the Dr to prescribe, but in the meantime I'm not sure whether to start him on the Tranquilyn one tomorrow and then switch to Medikinet in a week or so. Does anyone know if that would that potentially cause problems switching?

Neurospicy-having a similar issue with Medikinet XL 20mg; we've been advised to have the prescription changed to generic otherwise we may get nothing! They've said they can get 10mg XL easily enough, but the 20mg XL they can't.

Ah interesting - guess it’s trial and error and issues both ways! Dr kindly sent a new prescription but he said the chemist really should supply whatever is available if generic is specified even if it costs them more but they are only worried about their £ bottom line 🙄

Hi Everyone, just posting an update 10 days in.
My DS 6 started on Medikinet 10mg, I was extremely worrried and anxious about side effect and was watching like a hawk so I’m not sure if all of these were actual side effects or just coincidence!

Around 15-20 mins after having the capsules he was totally manic, literally jumping of sofas etc and talking a million miles an hour!!! It did settle and then we had a calm period but by 1-2pm was noticeably wearing off. Sleep noticeably impacted for first 4/5 nights, struggling to go to sleep and early rising. My son was always a reliable sleeper so he struggled with this and was then grouchy in the mornings. No change to appetite on 10mg. No ‘rebound’ really in term of mood but looking very flush every evening but not a temperature just warm.

Started with his target dose of 20 mf on Saturday so we are 4 days in. Big difference on behaviours, sense of calm
best way to describe it. Sleep seems to have sorted it out, taking a while to go to sleep but getting 10 hours ish which I think is ok. Big downside is since upped the dose he has no appetite at all during the day he’s always had a small appetite but not to this extent so that’s a concern. He is hungry at breakfast and dinner so looking to increase size of these meals.

Review with prescriber tomorrow, imagine we will continue for another month of this dose but reading previous posts I’m worried if we’ll be able to get the 20mg but I guess we’ll have to cross that bridge when we come to it.

Mu husband took my son to his football club where usually he has to be dragged around by my husband as he can’t follow instructions easily, loses focus etc. Anyway the difference was incredible, he listened to all the instructions and was able to join in and interact with the other kids. It was really heart warming as his adhd as really limited his social opportunities in the past. And to top it off he got the star player award for first time ever which made him so happy.

it’s certainly a rollercoaster journey so I’m sure there more ups and downs to coming. It’s very reassuring reading everyone’s posts and I felt a lot more prepared in what to expect from this thread. Wish me luck on hunting down the prescription!

Hi, my sons the same age and I echo about the clubs and not being able to listen. This is great news. My son is due to start a multi skills club in Jan but being after school I worry the meds are wearing off and he'll find it difficult. Perhaps I'll scout around for a Saturday morning activity.

Re the clubs - I had to stop all my DS6 ones for the same reason, but had started boxing one evening a week which since taking the meds has been amazing! So weird as the meds should have worn off buy then, and he is jiggly at school by about 3pm, but somehow his attention remains into the evening, he’s even been asking to do homework!!!! I know!!!!!

We are finding the same after the slight come down he’s more chilled than normal in the evenings. I’m going to restart at Beavers soon which is another club previously banished from!

I have read about possibility to add a fast release top up but reluctant to try this due to the sleep and appetite issues mentioned.

Anxiously waiting to speak to prescriber later for our review and see if can still get hold of the Medikinet 20mg for the adhd 360 pharmacy.

Hi, please can I join you. After what felt like forever, we finally had our first appointment with a psychiatrist yesterday and he has prescribed lisdexamfetamine. Going to give my DS11 first dose on Saturday morning. He has Autism diagnosis and a learning disability as well as ADHD so I wonder how much effect it will have. Our main challenge is aggressive behaviour. The psychiatrist seemed fairly optimistic about reducing violence...just have all my fingers and toes crossed now.

I am worried about sleep disturbance as I am incredibly DS is a great sleeper. My boy is also very petite already (off the bottom of the centile charts for height and weight) so loss of appetite/weight loss is not what he needs.

Banished from makes me feel so sad. Our school has just started a send multi skills club and I'm thrilled my ds has been offered a place.
I hope you don't have to endure the shortages, let us know how you get on.

Had review with clinician and DS going to continue on Medikinet XL 20mg for another 4 weeks before next review.

By next review hoping sleep will have improved, the last two nights been back to normal so will have to see if that continues.

The only thing that concerns me is school have feedback that he’s a bit more “distant” than normal. It’s really difficult as DS teacher already expressed to us that he doesn’t agree with medication for ADHD so I don’t know how much weight should give to this. We haven’t seen this at home at all and during weekend activities.

I’ll ask for another updated in a few weeks before our next review. They do agree it’s worked wonder for his hyper energy and reduced impulsivity so he’s not jumping on his friends etc. I am trying to be rational that need to give it more of a chance for him to get used to it.

With regards to Medikinet supplies the prescriber says in stock at the moment but obviously subject to change so I’ve just got to keep an eye to see if online pharmacy is able to fulfil it. I hadn't realised only get a month supply at a time.

Had anyone else had similar zoned out impact on Medikinet?

Hi all.
DS5 has just been prescribed a slow release capsule (not collected script yet so unsure of name & dose!).
I’m joining the thread as we start our medication journey…. I’ll go back and have a proper read through.

Hi @CoffeeCakeAndALattePlease when are you planning on starting the medication?

We had no issue with getting the Medikinet XL 20 mg from the ADHD360 pharmacy thankfully but I know might not be the same next month.

We have our next review with the prescriber on 18th December and need to complete more detailed questionnaire so will need to speak again with school.

Hope everyone’s getting on well. My son has first birthday party this weekend to attend since started medication. In the past these have proved tricky but he’s so much calmer on medication think it will be a good opportunity to see impact in social situation.

@SquashSqueezee He’s starting on 10mg equasym XL.

I think we’ll start on Saturday and school have said they’ll increase his support and provision next week in anticipation of it being tricky. I’ve heard that it can be quite the rollercoaster when first starting meds!

Hope your sons party attendance goes well at the weekend 😊

@CoffeeCakeAndALattePlease Good luck!! I was so anxious about it and convinced my son was going to have every negative effect imaginable but the reality was nothing like that for us. Prescribed mentioned if Medikinet doesn’t work out then equasym is the next port of call.

Wanted to post as had such a lovely moment watching my son at his swimming lesson tonight. He has private lessons as he was unmanageable for the group teacher but it’s been very slow going. Tonight he was listening and following instructions and at the end finally got moved up to the next stage! I know it’s only a small thing but I’ve struggled so much with the medication dilemma but it’s moment like this that give me confidence in my decision as can see the positive impact on him and his confidence.

@SquashSqueezee - lovely! These small positive steps mean the world! So pleased for your DS.

Good luck.
To be honest, the roller coaster bits for us were when the meds wore off and they gradually resolved over 3-4 weeks. It was just like living with the most grouchy, argumentative version of DD for an hour or so each evening. Have snacks available and do lots of counting to 10!

But the effect when she was on them was instantaneous and such a positive change.