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!

@Starlightstargazer I just read your post. My DD will be 18 in a few months. She was diagnosed late - 15 for ASD, 16 for adhd and started meds at 17 (they didn’t want to start her in the middle of exams). 14-16 is so hard, especially in terms of impulsiveness and vulnerability. It’s scary but I just wanted to send you a message that they do mature and hormones settle and things get easier. Today I noticed my car was almost empty of petrol and that is a big deal because for years I had it full because I never knew when I had to go to hospital / school/ police etc after an incident. It sounds a small thing but hang in there. DD is currently on Medikinet XL as well as very low dose Quatiapine 50mg to take the edge of anxiety and impulsivity. She’s heading off to uni next year, at one point it looked like she was leaving school with no qualifications.

Thank you so much for this message. It’s exactly the same here, even down to having petrol in the car at all times! It really really helps to know there is a light somewhere in the future!

Nope you're right about melatonin, it helps you in a proper sleep cycle. We use it in ITU with our patients frequently! It did help, as in we had 0630 wake ups rather than 0500. We haven't had it for 3 nights, and even DS is frustrated as waking up so early. This morning I dragged him out for another walk and he was furious.

God I'm tired!

Hi, I'm a newbie... my 13yo DD has just started metyrol 10mg (they wanted to try a different med but they weren't available). Once they wear off in the evening she is SO hyper, way more than when not medicated. Is this normal and will it die down, or is this a sign that they're not the right meds? It's day 3 and I want to cry...

Hi, welcome!!! Welcome to the nicest thread on mumsnet!

A few of us have experienced the ADHD zoomies. My son from 4pm was whirlwinding around the house so now is on a 5mg fast acting top up. Are you able to speak to your child's doctor?

@AndrewGarfieldsLaptop thank you... I didn't know if this was something that would die down or not (wishful thinking). I'll put in a call today and see what they say.

We had this and it does wear off a little. For us it was more pronounced for the first few weeks!

@Cheesybiscuitsmineallmine and @HauntedPencil we also had this. We then topped up 10 mg at lunchtime and it reduced. It’s also got calmer over time and if we forget to top up it doesn’t happen now

Quick update from me. Sorry to be so absent but we’ve had a rotten few months for reasons too outing to go into and which don’t relate to ADHD or meds. Time and emotional resources to write and reply have been really limited recently and I’ve been a slightly rubbish and often absent OP - I’m sorry to all our lovely regulars and also all newbies.

We are on a week long med break for the Easter holiday and so far so good. We are still doing our new method of tapering off the meds as poor DS was suffering so terribly with low moods and crying when we just went cold turkey on previous med breaks. I read about tapering off on a US site and it really does seem better for DS. As he has quite significant mental health struggles it feels really important to avoid sharp mood dips for him.

Looking at the page count, I can’t believe we are close to the end of thread II of all this fantastic support for each other from all of you! Does anyone fancy starting thread III when we are close to 40 pages? I can definitely carry on, but also happy to hand over the baton.

Happy Easter everyone

Sorry to hear you've been having a bit of a rough time @MissHavershamReturns and hope better times ahead for you, you've been so helpful on this thread for everyone. Happy Easter 🐣

Felt like we were turning a bit of a corner but the flipping med shortage has bitten us again, DS finally settled a bit on 40mg equasym and it's gone scares again. His teacher said he's not been himself for months but has seemed better just recently too. Managed to get 10mg so 4x a day but I'm not keen on going back onto Medikinet as it just dosent seem to suit him

Medikinet definitley doesn’t work for us anymore , we’re getting odd feedback even after 40mg

@HauntedPencil do you give equasym with empty stomach? Is DS actually different/better with it?

have to say we started the guanfacine nearly two weeks ago and the difference since this weekend is remarkable. Not sure about focus (‘some’ improvement) , but have already seen changes in emotion regulation, hyperactivity and defiance. He’s with me due to school holidays so it’s very very obvious! I am guessing it works on accumulative effect so fingers crossed there is more improvement to come

massively recommending to anyone that’s been considering non stimulants for some extra help

We had it as an alternative for about 3 months - started off ok but it just didn't seem to sit well with him after a few weeks and so we are on 40mg Equasym. Managed to get 10s after changing the prescription (such a potch). Hes only just started to settle down again after a really long bad patch

We give with breakfast so he has it shortly before then eats

Oh wow you did Intuniv and it was rubbish???
I thought it can only get better!?
so did you start ok and then it deteriorated?

We did Intuniv too and it was rubbish. No effect.

Interesting , very different here

do you remember how long for and what dose you went up to?

We have only found Medikanet XL reliably works but it is far from perfect. We tried Intutiv on 1mg and then went up to 2mg but no effect at all. I think they were the correct dosages. The doctor was surprised £300 down the drain….

We tried it for 5 weeks…

@LoveMyADHD it was Medikinet XL that didn't gel with us

We’ve never been on any other meds. As Medikinet XL works but just requires a top up we were always told just to stick with it.

We have had weight loss as a side effect but have more or less cracked that now as ds is still pretty light but not underweight in the medical sense.

I still don’t understand why a predominantly morning release med is in use in the UK where kids don’t finish school until after 3 pm, but with a top up it works ok for us. Sometimes do wonder if we should have been advised to try other meds, but I guess as no side effects the doctors think just sticking with it is the best option!

I was looking at research and apparently a high percentage give up on stimulants after a while (not sure if it’s related to tolerance , side effects or not working anymore); for info Medikinet doesn’t work in adults who primarily are on strattera (hence lack of availability in Uk)

Medikinet was amazing for us, just doesn’t work anymore and if anything he’s even worse

doc said we definitely have to give a stimulant on top of guarfacine but hoping it’s low dose

Got you! Phew…..

funny enough it doesn’t gel with us anymore either, blaming puberty!

Thanks really helpful! How old is DS?
if Medikinet is not perfect would you try other stimulants?

how old is Ds

Hello everyone

We've been away most of the Easter hols, staying up north in a beautiful cottage in the middle of a gorgeous village. We have had the best time and it's really got me thinking a lot about ADHD, the 'rise' in diagnosis and just life in general. I'm going to share my musings now, but please feel free to ignore 🤣🤣🙂.

So where we have been staying there has been nothing to do except country walks and the odd pub visit. DS has THRIVED. We have walked over 5 miles each day, over hills, up mountains, climbing over rocks, paddling through streams and mud. He hasn't once said he's been tired, or once asked to stop. Every morning he wakes up full of joy and enthusiasm for life. In the village where we have stayed there is a little park opposite the cottage. It has a zip wire, swings and small skatepark. DS and his bro have been there on there own, every day, for hours! We can see it from the window and at 9 we felt he was old enough. This freedom has been absolutely brilliant for him. He's popped to the shops for us and picked up fish and chips.

It really got me thinking about how much he just needs that simple quiet life with a lot of outside time and freedom. Back in the day, probably what, 2/3 generations ago (my mum in the 60's, definitely was a bit like this), kids were just chucked out the house and allowed to roam and get on with it. They would be back for tea. My understanding is that there were very few demands placed on children, they were outside a lot and given a lot of freedom.

Life now is so different. We live in a very small town, it's quite rural but DS still doesn't have much freedom yet. His whole life is spent in the house or sitting down at school. He spends lots of structured time at clubs and after school care and when we get home her has to do homework, piano practice, times tables etc. Obviously we go out a lot - but he can't just go out on his own so it has to be based around us being ready, doing jobs in the house oh and working full time jobs!!

I don't know what I'm getting at really, I guess maybe that years ago, ADHD went unnoticed as demands were far fewer and kids were allowed so much more freedom. I don't know, I just have a gut feeling that DS would have loved to have been born generations ago in some small village. He'd have been out on his bike all the time, pottering in rivers, scratching in the dirt with sticks, racing his friends. I mean he still does these things now, but only when I can facilitate them, such is the nature of life for his generation.

Maybe I'm just looking at it all through really rose tinted spectacles?! Opinions and thoughts gratefully received!

I can really see the appeal of living off grid ish and homeschooling for ND children in particular. If I could facilitate it, I think I'd seriously consider it!