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

Glad to hear that your DS is feeling benefits from the increased dose. On day 3 here of 10mg Equasym (which is an 8h long release - 30% within an hour and 70% spreads out for the remaining time) so slightly different to the Medikinet 50/50. So far so good. Says he is noticing details more than he normally would. I’d say he seems happier/more relaxed with easier transitions between activities. It’s half term but I’d like to try a bit of homework to really test it out!!? We have 3.5 weeks until we consider changing dose. I reckon he might need a bit more but so far it’s looking really promising for improvements at school when he gets back there...

@KnottyAuty that sounds brilliant! And that’s only at the starting dose isn’t it?! Sounds like no real side effects either?

We did homework and noticed a real difference, also with board games and reading.

Equasym sounds better than medikinet in how it spreads out the dose. We have to have a top up at lunchtime because the medikinet wore off way too soon for ds and he was experiencing medication rebound.

Sorry I wasn’t clear - I meant we noticed a real difference when ds first started the meds in Feb half term when we tried homework etc

@MissHavershamReturns yes - so far so good! We heard from an ADHD Foundation talk that protein at breakfast made the meds work better. DS has a breakfast smoothie with 2 bananas & protein powder which is maybe helping. We at toying with making French toast at breakfast time (only way he eats eggs) during term time. So far no significant side effects. All going much better than we ever hoped! Fingers crossed this sorts out all the school drama

@KnottyAuty yes! We’ve switched to a big high protein breakfast - I should have said on here before. We alternate fried eggs, boiled eggs, scrambled and about x 1 per fortnight do bacon or sausages. My youngest ds will only eat French toast too! We also give full fat cream cheese on toast, a yoghurt or a banana.

I’m guessing omelette is also a no for yours?

Really glad it’s so far so good!!

Omelette is a no sadly. Sorry I’ve not got time to read back through to see what dosage your DS is on... is medikinet 50/50 on an 8 hr release? What’s the afternoon top up? It all sounds complicated... but worth it if it’s working for you

Please can I join? Although I might start a new thread in SN teens.
DD (16) is on 4th week of Medikinet up to 40mg. DD also has ASD so it is quite hard for her to articulate if she is noticing any improvements. She had initial headaches but those seem to have stopped now. She has said that she has felt more organised in her exams in the last two weeks but then seems hit and miss too - some days she will do revision well for 2 hours other days she struggles. Apart from being more focussed some days she doesn't seem a lot different, still has ups and downs, still goes off on a tangent frequently during a conversation. Very hard to know if we should persevere or try something different?

Hi @duvet welcome to the thread! I can see a new thread might be helpful but feel free to keep posting here too if that’s helpful. You might have already seen there is an amazing book on the medications called A Parents Guide to ADHD medication by Prof Peter Hill. On Amazon prime. I would really recommend this.

It sounds as though it’s had some effect but maybe the dose still needs to go up @duvet ? When is your next review?

@KnottyAuty we are currently on 20 mg medikinet dp 8 hour. For some kids the medikinet wears off too quickly / sharply and they experience “medication rebound”. Everyone metabolises at different speeds. They then get mood swings in the afternoon. The solution if they have that, as ds did, is a lunchtime top up of immediate release. That sorted it for us.

Medikinet xl not dp!

yes maybe up the dose- but if there was an improvement then wouldnt it be more consistent?

We're with psychiatry uk - and dont seem that helpful :-( DD says that she felt more organised in exams last week - however I've been getting her to do more revision and at weekends she does not seem any different - surely the meds would be consistently making a difference wouldn't they? So now we're trying to decide whether to up medikinet to 50mg or try Elvanse instead.

@duvet ds is not having consistent improvements. That’s why we are upping. Huge difference at home. Not so much at school. It’s about the level of demand and tiredness etc I think. So will fluctuate.

Hi @MissHavershamReturns and everyone else. So sorry for my long silence. I often think about this thread but feel I need to re-read it to participate fully, then it feels too overwhelming to try and rejoin! Life has been so busy recently, but finally found time tonight to update myself 😊

It's really good to hear all your experiences, good and not-so-good. Our experience is as follows:

DS10 has been on Medikinet XL for about 6 weeks now I think? He started on 5mg daily and has gradually moved up to 20mg daily. I'm finding the effects difficult to fully assess. He has never been obviously physically hyperactive - fidgety but not full of energy as though driven by a motor. We sought diagnosis because of him being easily distracted at school, struggling to maintain focus/stay on task in lessons and finding it very difficult to organise himself (we have to micromanage his homework schedule, any projects etc).

On meds, he is not noticeably different at home but there have been occasions where he has seemed more focused for certain things (like his SATs revision). I suspect his meds have worn off by the time he is due to do his homework, but then he hasn't had any homework since SATs a few weeks ago, so this is difficult to assess.

We recently had the first feedback from school since starting meds, and the general comments were that he is more focused and stays on task better. Although one English teacher who tends to have him for the last lesson of the day, has commented that he seems quiet and a bit withdrawn. Perhaps he will need a top-up dose at lunchtime?

He has occasionally seemed a bit quiet and withdrawn at home on the day of a dose change, but that doesn't persist as he acclimatises to the new dose.

His appetite is definitely affected, which worries us as he is already shorter than average and do we don't want his growth to be restricted. He loves tuna and sweetcorn sandwiches and so has one every day for breakfast with his meds, to keep his protein intake up. We don't have any control over what he has for his school dinner, but are trying to ensure a good protein and veg intake at every dinner (rather than too much carbohydrate). I don't think he drinks enough water at school, which will affect his cognitive function, but again, we can't do more than remind him in the mornings.

I'm not sure what the ongoing plan is at the moment. I will update more later as need to sleep now! Can also update on my own experiences of trying ADHD meds sometime if that would help? (Quick summary: currently on XL methylphenidate 18mg. Improves my focus, but nothing life-changing so far. Will be changing to lisdexamfetamine (Elvanse) soon - hoping for better focus on it, especially when external noise at work).

Thanks for the updates - it's interesting to read your experiences of improvements being more subtle so far. It's confusing because advice given is that it should be 'life- changing' including by Psychiatry Uk. I feel bad too because it's hard to tell with DD what's side effects and what's not, because of her sensitivities, she has always been one to complain of things like a headaches, not that I disbelieve her - it's just that they can come and go very quickly depending on what she is doing.

Hi duvet, yes, definitely doesn't seem "life-changing" in a dramatic way at this stage, but I suppose a lifetime of the school reports we've had up until now ("academically able but struggles to maintain focus, gets distracted easily, doesn't complete set tasks.....") compared to a lifetime of the recent update from school ("working well and with focus, finished the tasks for that lesson"), could represent a real change in how his life turns out.

Because DS doesn't have the obvious physical hyperactivity, the changes don't appear dramatic. I suppose in an ideal world, I'd like to see him become better at organising his own life, e.g. remembering he has homework without prompting, and taking himself off to complete it, but maybe that will improve as he gets older (and stays on meds)? I was terrible at remembering my homework even existed throughout secondary school, but masked by doing it in my classroom in the morning (had to be dropped early at school due to parents' work timings).

I see what you're saying about the headaches too. I wish I had kept a diary from about 2 weeks before DS started meds, with general comments about focus, motivation and possible side effects. I thought I'd be able to clearly see if a dose change was "better" or "worse" but sometimes I struggle to decide.

I do think it will be interesting to see if I find a dramatic difference on Elvanse compared to methylphenidate, as I have read that there are many different genes linked to ADHD, and that is probably why different people with ADHD respond differently to meds. So if I respond very well, it is likely that DS would do (likely genetically-similar ADHD?)

Trouble is, I know Elvanse costs a LOT more, and whereas I am on NHS pathway, DS is on private pathway, and the Medikinet is expensive enough! 😱

@AlwaysFireFighting great to hear your update. Don’t ever feel you have to read to dip back in. I think all of us on here understand that life is very busy when you have dc with SN plus I’m sure a few of us (including me) either have ADHD dx ourselves or are thinking of seeking one. I could do Mastermind with distraction as my special subject so NEVER feel you need to read back

@AlwaysFireFighting So pleased to hear positive updates from school - that is absolutely amazing! Hopefully that effect will get even better as you continue to titrate. You could always ask to add a trial top up at lunchtime? You could see how it goes at home one weekend

@duvet it’s really interesting to hear you were told it should be life changing. We got very much the opposite sort of talk - basically were told to have realistic expectations, it’s not a cure etc etc. So I guess I was not expecting much but am thrilled with what we’ve got. I’m not sure I would have felt like that if I had been told to expect life changing IYSWIM.

Headache wise you can probably see from this thread ds had them at first. By one week in they stopped. I hope your dd’s will stop too

Aaaahhhh, thank you @MissHavershamReturns for being so lovely. I am so grateful to you for keeping this thread running. It is so useful to compare experiences with you all.

I think you are right about the lunchtime top-up. I'm definitely going to ask his nurse about that.

Good afternoon! I hope you are all enjoying the sunshine. Just a quick check in to say that our first week on 10mg Equasym has not been perfect (by a long way!) but we can see that this is going to have great benefits for DS and it feels very positive for the future. I hope you are all doing well xx

Ooh @KnottyAuty so pleased for you. It’s very hard in the early days I found but longer term the gains can be amazing!

@MissHavershamReturns we got through our first month really well on 10mg and are going up to 20mg for next prescription.... wish us luck!? How are things with you?