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

Thanks @MissHavershamreturns I’ll have a look at that link. He can swallow things just fine, he takes vitamins every now and again when he decides he’s going to. I suspect he’s apprehensive about possible side effects and whether or not they will change him. But that’s just me surmising, he hasn’t really vocalised it yet. He’s possibly not yet accepted he has adhd yet either. We’ve got the adhd is my superpower book, but he’s not really interested in that yet.

Our son wouldn’t swallow the tablet - hence we started with Medikanet as you can break the capsule and put it on eg toast - we sprinkled it on with marmite.

Hello

I am about to start my DS on meds for ASHD (private diagnosis) - I've collected a prescription today - I was initially told I'd have to pay for the meds and there was no charge for the script itself - when I picked it up they tried to charge me £40 just for the script. Is this normal just wanted to check and with the cost of meds on top this is really going to bump the costs up

I've initially been given 5mg for breakfast and 5mg for lunch time so will see how we get on with that

Hi @HauntedPencil I’m can’t rely properly at the moment but didn’t want to read and run. I’m afraid that is normal on the pricing.

Oh sorry no I misread. We paid £250 iirc per medicine review, then £60 day for a box of meds

Not a day! Just per box. So I wonder if the script payment is like the medicine review charge we paid? I was never expressly charged for the prescription itself.

Thanks for getting back to me - yes expecting to pay for a meds review and follow up etc this was after paying £750 for the intial consultation and agreeing to try meds - I have to pay a set fee for a check up & review as well! I've queried it and hopefully it'll be something else as if I need to pay for each one it'll be a nightmare.

The meds themselves were only £7 but expect that to ramp up if they are changed as he's getting the 5mg Medikinet at first.

Waits for NHS of 2 years here so that's nice

@HauntedPencil I’m so sorry to hear you are having a two year wait. It’s 2-3 years in so many areas it seems. Very stressful!

In case it helps if you scroll back up a bit three of us set out our total costs so far for going private. It’s about a page back iirc.

I’ve just managed to get gp to take shaded care. Once dose setting is finished even if you haven’t got an NHS consultant your gp should do shared care. So hopefully the light is there at the end of the tunnel

@HauntedPencil it might be useful to look at the posts from 25 and 26 August

Thanks - yikes really not cheap is it. I've been told he will need reviews at 175 ish each depending who with at regular intervals, pay for the meds etc - but the £40 just to have a prescription written was a bit of a nasty shock:

His 10 mG a day (2x 5) was only £7 ish today but I guess that'll ramp up.

They've said then he can be referred back in to the ADHD clinic but won't be fast I know - how long has it taken you to be stable? I hope it helps him he's really finding school hard at the minute. Waiting 2 years just wasn't an option but it's so expensive

I was thinking of starting Saturday, his will last 3.5 hours @ 2 a day but the problem is he does so much after school and I'm worried about how he'll feel at tea time after the second one - guess will just have to see what happens:

We have to pay £30 for a private prescription (which I really resent) but Medikanet for us for 25mg is about £50 for one month. That was the Boots charge. We have been paying about £50 for Concerta - trying to find right dose - but for 27mg just prescribed we have to pay £100 - all through Boots. I think there is a real inconstancy with pricing…

I went to Tesco because I read it was cheaper.. maybe even on this thread.. who knows it definitely seems a bit random

@HauntedPencil I can post properly now, so just wanted to say welcome to the thread and keep us posted on your journey. Are you still planning to start tomorrow? We found weekends/half terms best for us as starting on a school day seemed a bit of a lottery in case of side effects.

We found the first few days a bit scary if I’m honest but we’ve been very lucky that ds doesn’t have any substantial ongoing side effects. If you look back at the start of the thread you can see what I posted through the first somewhat rocky week. Actually ds did have crashes but with a second top up med he doesn’t seem to have them any more. He’s much less anxious, handwriting much better, much less overactive and can concentrate far better, so it was definitely worth it for him. Really hope it will be the same for your ds!

Thanks that's really good to know - similarly my DS really struggles with his writing and spelling more so than other things. His symptoms have got more pronounced this year he's just started year 5, very bouncy finding it really hard to listen/concentrate

When you mention a top up what does he take now? We are starting at 5mg at breakfast and 5mg at lunch - she did mention the possibility of a tea time dose for clubs etc

We have medikinet XL which is the 8 hour long acting. It releases more in the morning so ds has a top up at 1.30 pm of the immediate release

That was to you @HauntedPencil

Is your ds on immediate release morning and lunchtime?

Yes I think so - she likes to start them off in these ones first to see how they go - I'm hoping not for long as the lunch dose is really annoying for school etc!

Let us know how it goes today @HauntedPencil and good luck!

Thank you! Quite uneventful so far, not much of an effect he says

Uneventful might well be good!! We started on 10 so I’m not sure what 5 might look like.

Did you start on 10 x 2 a day? I'm to give one at breakfast and one st lunch. He doesn't feel a lot different but then again he hasn't had to concentrate loads in the day - very bouncy this eve

mine started on 10 in the morning only

@HauntedPencil i keep forgetting to tag you!

i have to admit I didn’t see much reduction in hyperness until we got to 20 a day

I did think that - but it seems good that he's not had any adverse effect - he seemed ever so slightly calmer but he didn't feel much different in himself though.