Starting Medikinet - any experts around?

[MissHavershamreturns]

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious so I want to start on a weekend or half term which is now only ten school days away, where I can support if there are side effects as they may be very frightening for dc, given they are currently pretty vulnerable.

The paed has suggested that the most likely effects will be headaches, appetite suppression and difficulty getting to sleep. Is this what everyone found?

Does anyone have any advice on what time to take it? Paed said best to take with breakfast but dc is a very early riser (up from 5.30 am). We currently have breakfast at 6.45 am and then dc is into school for 8 in early Club and is collected at 3.20 but some evening club nights until 4.30pm. It’s the 8 hour version of Medikinet.

So grateful for any advice on what worked and what didn’t

So my experience was that it's helped him but he still has incidents or meltdowns and he had one in both the first weeks of starting and tittering up, my feeling now is that I'll do those things if needed in half terms. He's doing great on 30mg but it hasn't stopped them completely but it helps him get more out of each day without the low level constant stuff. He has a really upsetting large meltdown in March and really good since. Hope he feels ok soon.

That is interesting. I definitely think that he is better on the Equaysm. We had a few rough days on Medikinet and there is more of a 'come down'. I might query it.

The prescription was actually just for methylphenidate 5mg and didn't specify the brand, whereas the Equaysm did.

Your insight is great, thanks.

We were better in the equysum i think it's a steadier dose, our consultant only starts with Medikinet as it's fast working as she said if it works, we know without doubt it's ADHD!

We had some Medikinet to use for top ups if needed / maybe this is an issue that will be solved when you go up a bit as you suspect you will as DS lasted longer on 30 than 20. He buzzes around after school but in a completely fine way.

We’re on day 4. No side effects, thankfully no trouble sleeping, if anything he seems more tired. I haven’t noticed any differences, he’s a bit more agreeable with getting out the door in the mornings possibly.
School think they’ve noticed a difference in the mornings but not the whole day. They just keep saying mornings have been easier. He’s on XL and though so surely tbat should see him through.

@Freshstarts22 is he on Equasym XL?

When DS was on 20 school did report it wore off in the PM, the 30 seems to get him through but he's dead bouncy on pick up!

He’s only on 10 at the moment so I’m aware it might not be doing much. He’s definitely not hyper after school, he’s actually rather quiet in the evening, but he spends most of his time after school on electronics or playing football and has never been the bouncing off the walls type anyway.

Yes 10mg

We started in 5 plus 5 of Medikinet rather than the XL and they did report an improvement in the morning. I had issues with school not doing the top up so it wasn't ideal though.

@Freshstarts22 mine is on 10mg of Equasym too. If we give it at 7 it's almost worn off by 2. I would say by 3 he'd be totally free from it and by 2 you can definitely tell it's waning.

He seems calmer and less distracted at home but it's not a huge difference yet. Not sure how school have found him yet. Finding out tomorrow. Quite nervous, not sure why!

We give a top up at 2ish.

How did it go at school?

@HauntedPencil thanks for asking!

It went well. His teacher says they have noticed a difference. He's quite a bit less disruptive and more regulated. They haven't really noticed a big improvement in focus but he has needed a bit less support with his work.

I was getting calls and emails every day about his disruptive behaviour or emotional meltdowns. The past two weeks we have only had one incident and phone call so that's amazing really.

All in all it was good. I am fairly confident his dose will go up but I feel confident we are on the right path.

I'm so so proud of him and proud of us too for getting him the support he needed and pushing for it. School never ever suggested he might have ADHD. It's only happened because I pushed. And frankly because I've took time off work and went freelance to support him and do all the stuff we needed.

That's amazing news - really pleased for you. I know too how it feels to get those calls all the time, and he must feel so much better too, sounds like a really positive start for you all

@WesternEasterner So pleased for you all. When you realise you are on the right path, it's like an enormous amount of weight has been lifted off your shoulders! The hope is suddenly in the not so far away corner. Well done for pushing it. Big bravo for the courage that young man has shown!

My son is doing really well on the meds but I do have a small issue. Daddy on occasion forgets to give him the morning capsule!! This has happened twice on a school day and three times at the weekend over the last couple of months. On these days he eats loads but cannot keep himself on track and Struggles with this. We are going to try an alarm on dad's phone to see if that helps. I am trying hard not to be cross about it because it won't help but honestly, I am cross about it so thought I'd tell you lovely lot rather than be all snitchy with him!!!! Does a one day here and there day off do any harm overall?

@NurseP my dear even I put a daily alarm on 😫… really really put that alarm on!!! Don’t worry what happened won’t impact anything long term…

@WesternEasterner well done such a relief!!

@LLoveMyADHD thank you. X

@NurseP I also have one of those daddies. I got so irate with the occasional forgetting (while trying not to let it show!!) that I took drastic action.

I have created a massive sign with thick coloured pens which says STOP! MEDS! I now sellotape this to our letterbox on the inside of our front door every day when dad takes him to school before I leave for work. This has worked a treat. No more forgetting since then.

I also text him most days he does it from work to confirm he’s given it and if not we have agreed he would have to go in to school to give it. This I think has helped incentivise dad!!

I’m sure I have adhd and dp definitely has asd and probably also adhd or adhd traits. So I’m afraid we’ve forgotten a few times between us (I only ever forget at weekends because I use a checklist for school days) and it’s had no impact whatsoever on ds

Actually checklist is another idea possibly for your dp! To manage the school run I have to use a laminated checklist and I tick items off with a whiteboard pen. If I didn’t do that because of my own adhd nothing would ever get done properly! My last tick box is ‘give meds’. So you could also create one of those.

Alarms help, but dp and I are such procrastinators we have a tendency to snooze they or switch off and still forget to do the task!

Quick post from me as I have about ten minutes before I have to collect ds2 from a sleepover!

It’s all been a bit crazy here because we’ve all had covid and because of some work deadlines, so I’m not always finding time to post, but I am reading everything and love seeing all our shared journeys. This is definitely a great space!

@Freshstarts22 amazing that your ds can now take the meds! What a brave boy because overcoming a fear like that is a real achievement. My ds has had self esteem issues for the last few years and we’ve made him a scrapbook and we write up little moments like this and stick them in. We also put in any certificates from things like judo, swimming lessons at the local pool etc. We did a course on parenting for ADHD and this was one of the ideas. Also suggested giving well done certificates which we do too. I bought some off Amazon and write my own - so write them up on these moments and all these go on the pinboard in his room or as pasts into the scrapbook.

@WesternEasterner I have meds wobbles too (actually quite often) and then I have to try to remember that section of the meds book where it points out outcomes seem to be much better for children who were medicated. So while it does flatten things a bit for ds, it also means he’s less anxious and as he was expressing some very negative thoughts about himself before meds, I have to just keep reminding myself that the trade off is worth it!

Future of the thread - klaxon!

We are almost at 40 pages of amazing support and knowledge. Unless we are talked out (don’t think we are!) I think we should keep the thread going with a new thread once this one is full. Happy to start thread two but also happy for someone else to take over as OP if they are keen to!

We need a new much better title than my original one that reflects that we cover all medication, not just Medikinet. Maybe something like ‘Starting ADHD medication and staying on it support thread for newbies and experts’?

Thanks @MissHavershamreturns . I will definitely follow you to the new thread.

I feel a little bit disheartened. First week nearly done and I don’t think there’s been much change. He’s still needed to be ‘physically supported’ at school this week. I know the dose will likely be increased but I suppose I worry that most of his difficulties stem from ASD so won’t really be helped by medication.

Quick question, are the 20mg equasym capsules bigger than the 10? Because I struggled so bad to get him to take the 10 I think that’ll set him back. Especially seeing as he’s struggled to swallow the 10 a couple of times and spat it back out.