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

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of 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. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

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.

This is thread 2 and 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 it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

How did your review go? Was it today?

DS hasn't had a great nights sleep, and because of that, he hasn't had a great day. Does anyone else find this? Poor sleep, poor day?

Last night he had some switch time; this is something he hasn't had in a long time and I thought it would be a nice treat as he's had an excellent week at school. Well it kept him up until 9pm, and then we had sleepwalking at 2am and 5am. We have had no screens (but family tv) all week and he's been doing well.

Definitely early night here.

@AndrewGarfieldsLaptop yes the late sleep if they have any screen time at bed....yes my DS does this. Again I absolutely empathise with you as you're right he's had a great week and deserves a little downtime of his choosing. Its a tricky one.
So we had his review and the prescriber wants to keep him on Medikinet and double his dose to 20mg. She said she doesn't like changing their medication where it has been found to at least be effective, albeit for a few hours. So she'd rather up the dose as far as she can take it to see if it helps. I asked about a top up at lunchtime and she again "does not believe in top ups" unless for afterschool clubs because then you have a up and down profile for the child during the day and she doesn't feel its fair to do that when he's only 6. As he gets older for homework/ exam prep or if I want to put him into afterschool clubs then she'll prescribe the top ups but not for use during the day. She has also prescribed DS melatonin to help him go to sleep as for the last few weeks he's been wired at bedtime and I genuinely can't tell you why.

Melotonin really helped my DS. He goes to sleep in about 20 mins, and he actually is "rested" which is a relief.

I hope the 20mg works for you! We have a 5mg top up but only use it twice a week; Wednesday for gymnastics and Saturday as we usually go out for the day.

Yes we definitely find that a poor night's sleep means DS has a tricky day. When we went to see the paediatrician for our initial assessment and diagnosis, I explained our elaborate and lengthy night time routine which to me had become quite normal. Basically bath/shower at 6, then a quiet play till 7 and then he would read quietly for an hour, light out at 8 and hopefully on a good night asleep by 9/9:30. It was and had to be very rigid or DS would be up till gone 11. The paediatrician gently said that wasn't 'normal' and prescribed melatonin for him. He is now a very normal 9 yo who can stay up and watch TV until 8/9pm at the weekend and not struggle to fall asleep after. We just couldn't do this before, the knock on effect was too huge. He takes melatonin at 7:30 every week night and is asleep by 8:15. He easily gets 10 hours sleep now whereas before it was 8 most nights. The difference this has made is HUGE.

@WesternEasterner that is so interesting. I’m really glad it works so well. Any down sides of taking it?

We find sleep hugely connected to his sunptoms - in the summer it was incident after incident with him struggling to sleep in the heat. He's taking 10mg melatonin now and still saying he's finding it hard to drop off - I might speak with his consultant and see if there might be anything else that could be done

No. Absolutely none. I haven't researched it, I just trusted our Dr and had a quick Google. For us, sleep was so bad that I think the benefit of sleep would outweigh a lot! The paediatrician explained it's not a medication as such but a hormone that kids with ADHD/ASD just don't produce enough of. She said it was perfectly safe to use and she even said siblings etc could use it! It's legal to buy over the counter in the US and Canada and in a lot of European countries.

It does occasionally stop working which is a pain and we then have to go two nights without it. Then we can start up again and it works fine. I try to sort of pre empt these so we can have a break on a Fri/sat but I don't always manage it. But if it doesn't work one night we just have the next night off too and then on the 3rd night it works like a dream.

We buy ours online as suggested by our paediatrician and I would happily share where / what we get if people are interested.

@HauntedPencil have his meds definitely worn off by the time he is going to sleep? I'm sorry the melatonin doesn't work for him. I think 10mg is a pretty decent dose so I theory it should work!

So im an ITU nurse and we use melatonin a lot to help promote a healthly sleep cycle. The downside is that your body can struggle to make melatonin when you have had it artificially for a while, but this is when I'm giving 20mg whacking doses to people in comas for 6 months at a time!

I love how Americans will give their kids melatonin with their dinner, but in the UK we panic about it!

I get mine on prescription now - interesting maybe I'll take a 2 week break over Xmas and see if that helps - he's getting a new bigger bed soon and I'm going to try a weighted blanket too. Sleep is huge for us, if he goes a prolonged time without enough it's definitely linked to big meltdowns at school.

We are also seeing a therapist for him now becusse I was so worried about how sad he seemed and his self esteem after a few incidents at school. I think it will help though early days. One thing that came out of it that I thought was helpful already is that we are working on recognising when he is getting angry and needing to step away mich sooner than he is currently.

On the side effects also none - it's a natural hormone so no grogginess in the morning or anything like that - just pick up and stop whenever.

@MissHavershamReturns
@AndrewGarfieldsLaptop @HauntedPencil @WesternEasterner The only side effects our prescriber mentioned was vivid nightmares that he may remember the next morning. But as all of you have said its about weighing up the good vs. bad. At the moment him not having his full 10hrs sleep than he used to have is definitely impacting on him!! So we'll trial it and report back. Honestly I do think we'll need the 5mg top up at some point as I don't want him missing out on afterschool activities but for now we're looking at packing our weekends with stuff so we can give him a break after school.

Let us know how the therapist goes. We have a play therapist but tbh it seems a bit pointless, I asked for school to get it for when baby sister no.2 was born (DS's baby sister no.1 died in 2021) and we have only just got it... 9 months later.

DS has a double bed and it does help!

I'm on a waiting list for some sort of help but it's 19 weeks long and god knows what it will be - if nothing else he seems to like the opportunity to talk about it and that can't hurt can it, not sure if the specifics they do but he gets a big pad out and talks about the things that trouble and upset him at school.

I don't think it's the meds, he's always foind if hard to sleep. Even when he was little you'd see his little face in the window looking out of you got home late.

Our kids have so much to contend with don't they

That's so helpful to know, thanks. DS doesn't like the idea of depending on medication and was asking if he would get dependent on the melatonin. So I showed him this.
We've agreed we'll try to give him a holiday from the melatonin over Christmas when he's off the Medikinet.

Our prescriber has stated we give Melatonin for 3 months then a break of 2 weeks over Easter. So im guessing it's exactly what those have said about it not working after prolonged use.
Sleep is a biggie for us too....DS needs 10hrs and when he spirals like he has having less than that the emotional meltdowns are HUGE.

I'm going to focus on the little wins today... DS managed to sit through Wish at the cinema. He's been going to the cinema since was around 3 weeks old, but since he was about 4, he's been a nightmare. We saw paw patrol a few weeks ago and he was a bit twitchy, but today he sat through the entire thing and didn't make a peep. All praise the 18mg!

@AndrewGarfieldsLaptop that's brilliant! It sounds like the medication is working really well for you.

@YearLongChristmas that's interesting about the prescriber suggesting 3 months then a break. We can't get to 3 months with it still working, I think ours stops working every 6/8 weeks. We also only take two nights off but perhaps I'll try and start tracking this.

Last night DS didn't sleep a wink, despite his melatonin, and the week before too. On both occasions he has woken up because the bloody cat jumped on him at around 10/11 and then literally not gone back to sleep at all. It would seem that the melatonin only helps him get to sleep but doesn't help him stay asleep at all. So today he will be running on 3hrs sleep. At 1:30am we both went downstairs for a change of scenery and I put him the TV on an snuggled him up on the sofa in front of some incredibly boring bbc4 show. 90 mins later he was still wide awake and I have to admit I gave up. I just said not to worry if he didn't sleep but that I needed some. I went upstairs to bed and left him to it. 7am came and I was expecting to find him finally having crashed out, but no he was watching Pokemon and proudly said he hadn't slept.

@WesternEasterner that is tough and I am sending you so much love! I genuinely don't know how these kids do it/ function when they need the sleep.
@AndrewGarfieldsLaptop Yes!!! Take the wins this is huge!!
I drove around like a lunatic today to go and pick up DS prescription and then find a pharmacy who could get Medikinet and Melatonin today (we have run out today and our precious pharmacy had said they had it instock which they didnt!!!). Suffice to say due to the shortage no pharmacy locally (within a 15miles radius) could dispense the entire 2 months (ahem £190) worth of meds. But I fell upon a lovely pharmacist who gave me what he had and will fulfil the total order tomorrow once it comes in!
By 1pm I was completely wired and felt like I'd been in Mad Max the way I was driving! Hahaha

£190!!! Where are you based? I'm paying £55 at Asda!

@AndrewGarfieldsLaptop for 2 months supply? He's been prescribed 2 months of Medikinet XL 10mg, Medikinet 5mg, and Cerciden 2mg (Melatonin). So each Medikinet pack is £35+. Are you telling me you get 2 months worth at £55 at Asda of Medikinet?

Last month I got 5mg of Medikinet, 18mg of concerta and 60 x 1mg melatonin tablets for £55 from Asda. That is one months supply... I'm Birmingham way! drive over!

Please don't think I was being rude @YearLongChristmas!!! I get so angry by prices; independent pharmacists have quoted me £200, but I've found Boots and Asda to be the cheapest.

@AndrewGarfieldsLaptop oh my goodness I think that's worth the trip! Haha. You're not being rude at all. I live in Surrey!