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

@Purplepeople12 great news! We find the first few days often seem a bit iffy when moving up but then things are better. I hope all will be good and you will see improvements. Completely agree with you about going to the higher dose over a weekend - we try to do this or over a school holiday where we can.

We are about to trial our third dose of Concerta - we tried 36mg and it totally changed DS7 personality; then we tried 18mg and it didn’t have any effect. Just been prescribed 27mg…at a cost of £100.

We have had success on Medikanet (15mg in morning with top up at lunch of 10mg) but he really crashes when it wears off.

Has anyone had success on Concerta after being on Medikanet? To be honest - surprised that the Doctor keeps on wanting us to persevere with Concerta - so much waste (of money)….

That all sounds very stresssful @Hels20 . We were told if medikinet continued causing crashes after the top up was tried then we would be moved to concerta. In the event the top up worked for ds. So it sounds like it’s a common prescribing approach. But the titration of the concerta sounds a bit odd!! Not that I’m an hcp at all.

Were you hoping to try an amphetamine based drug next?

Thanks @MissHavershamreturns - what drug name has amphetamine? And why might an Amphetamine based drug be better? Is Medikanet amphetamine based?

@Hels20 I’m putting this all really badly as I have no medical training. Im sorry!!! Going to try again to formulate what I mean and repost…

Right so!!! Quickly summarising from what I took from the Prof Peter Hill medication book. There are obviously two main groups of adhd meds - stimulants and non stimulants.

The stimulants are most commonly prescribed. They fall into two different groups. Methylphenidate based and amphetimine based.

Around half of all dc do equally well whether they are prescribed methylphenidate or amphetimine based. BUT around 25% do better on methylphenidate and around another 25% do better on amphetimine based.

Basically this is because the different stimulant med types work differently to treat ADHD

Medikinet and concerta are both methylphenidate based

NICE says that after 6 weeks of methylphenidate isn’t working then amphetimine based should be tried

I’m not sure how keen drs in the UK are to prescribe the amphetimine based ones

Just checked meds book - you can get it in the UK as an adhd medication called Amfexa

Also complex @Hels20 because it sounds like your ds was responding to the methylphenidate but was just having horrible crashes, poor boy. So maybe dr takes the view it’s about continuing with methylphenidate and getting the right set up for him

You are amazing @MissHavershamreturns - thank you. Will report back when we try 27mg Concerta - likely to be next weekend as I don’t want to try a new drug on a school day…

Wish I could 'like' comments on here! I agree@Hels20 @MissHavershamreturns is such a help with all of this, so glad I popped by when I did as it's all quite scary isn't it.

Fingers crossed these dose changes help our children

@Purplepeople12 and @Hels20 I’m so glad it helps you guys

Honestly this thread has helped me so much too.

I feel that choosing to go down the medication route is a massive decision or at least it was for me. Really helps to have company!

@Hels20 good luck with the concerta and keep us posted!

How easy did you all find it to get your child to try the medication? Mine is currently really resistant and isn’t voicing the reasons why not. The paediatrician is recommending starting on Equasym XL to cover the time he is in school - has very recently been diagnosed as inattentive adhd. P

Hi @OnePlusOneEquals welcome to the thread. How old is your ds? Maybe someone here has a child the same age and can advise!

@OnePlusOneEquals do you have the medication book by prof Peter hill? Lots of really reassuring stuff in there that I’ve explained to my ds

He’s 11, I’ve got the book and have tried a few approaches and discussions. He’s very stubborn though and likes to make his own decisions, I’m thinking maybe some YouTube or TikTok recommendations could help - but am reluctant for him to just search them as there could be all sorts popping up for him to view!

He’s not even keen on taking paracetamol if in pain or having a fever…..so I’m not overly optimistic tbh

My child is a similar age. I would say that it took time - we made him part of the choice. We read all dogs have ADHD which he loved. We then talked about how some of the symptoms of ADHD can be reduced by medication and would he like to try? He was then keen

If it’s a sensory thing about actually swallowing the drugs there are a few things you could try. Some people have had success with practising on cake decorations - you start with hundreds and thousands, build up on size to something much closer to the capsule

@OnePlusOneEquals The other thing that can help on the sensory side is that some types of medication can be opened from the capsule and taken on something puréed. The Peter Hill book says eg apple sauce, as that’s what they used in the scientific trials. But he says it needn’t be. I’m not an hcp so obviously no idea on which ones can be taken like this but your specialist should be able to tell you.

chadd.org/attention-article/how-to-talk-with-your-child-about-starting-adhd-meds/

@OnePlusOneEquals the link I just posted has a lot of good ideas. I wish I’d seen that earlier tbh! I like the idea of them taking charge of their own personal trial of the meds and filling in their own rating sheet. I think my ds would have loved that.