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

@LoveMyADHD I really appreciate your advice on supplements. I will look into it all a bit more.

Love your post!

you’re doing great, keep on going !!!

we ll be having meds break for nearly 4 weeks starting this Saturday, it ll be hell especially at the beginning perhaps due to rebound or maybe due to us getting so used to seeing them with the drug but what can we do we just need to exercise patience (hardest bit for me!).. but my kid had gained 4cm height since summer so really worth it!!

good luck @MissHavershamreturns and massive welll done!

@MissHavershamReturns , good luck with everything! Keep us updated~

May I ask a question instead opening a new thread?

How did each of you as parents know when titration reached the right dosage? Did you pushed until side effects overcome the benefits, or you stopped when you found the outcome was sufficiently satisfying? If it was when until the balance got tipped to the other side, what wes the level of side effects?

We are going to have another Zoom appointment with psychiatrist near end of the month. Just wondering if we shall push for more increase. Currently DS is on 20mg XL and the difference it has made us noticeably helpful. DH is both impressed and grateful so he wouldn't mind just stopping here. But I feel there's still blockage in his thoughts to organise ideas and expression, even though, has improved to an acceptable level. I got a feeling our psychiatrist wouldn't push more if we don't. Hence, I'd like to hear some of your experience and advice if possible.

Would be grateful.

"the difference it has made is noticeably helpful"

We have been on 40 for a while and recently started a 5mg top up. We have been settled here but the unwanted behaviour is starting to creep back in, lots of swiping and climbing and jumping in school. Not sure if we need to increase.

@NurseP , is 40mg usually the maximum allowed for children? I remember someone in earlier post was able to have prescription higher than the usual allowed threshold (called off label?).

Some children develop tolerance over time according to some research paper which suggests medicine holiday to reset the body.

Sorry I don't remember in earlier posts if you mentioned you do medi holidays.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9332474/#:~:text=The%20longer%20the%20study%20duration,medicines%20over%20time%20with%20treatment.

"In a review paper summarizing the long term outcomes from the MTA study, Hinshaw et al., write: “medications targeting dopamine and norepinephrine neurotransmission may, at least in some cases, have an ‘expiration date’ with respect to their effectiveness over the course of continuous administration… In short, just like behavioral treatments, which are known to lack continued benefit once the contingencies are lifted, medication for ADHD may not always be a viable lifelong option”

"The reason for the drug holidays were to see whether medicine was still needed and to manage side effects (such as growth slowing) and for drug tolerance. One of the studies documented that doctors used breaks from medication to allow the body to readjust to the stimulant and to avoid the need to raise the dose of the medication; in other words, to reset tolerance to the medicine."

Thanks for your post R2theB, I might talk to the paed about having a holiday over the summer. We don't have any weight issues and I'm sure my son still needs the meds, but resetting the tolerance is definitely worth considering. My DS who is nearly 11 is on 25mg.

What a wonderfully informative and supportive thread this is 😘

It's done by weight. It's something like 2mh per kg I think.

DS Is on 30 but our consultant mentioned he could be on up to 65 to give me some context. I'm also wondering about the tolerance as we've had creeping in again it various things swiping twitchy and another school episode as well, waiting on an appointment next year now

Whoops month I mean

@NurseP , @HauntedPencil , may I ask how long your DC has been on the same dosage before it started creeping in again?

He went on this in October and he was intially quite withdrawn quiet and lack of eating then he has a great few months this past month 2 bad bad school episodes and after that just back to being a bit more ahdhy generally

There's another new research paper seems pointing to the dopamine transporter has thickened after one year of medication. They couldn't tell, yet, if this is because of the medication for sure. However, I deduct from what that means is that if it's because of the medication, the brain has adapted and thickened the transporter to reverse/balance the medi effects.

Sorry, I probably need to find the paper and post it here (again). But it didn't sound like good news.

That's less than a half year journey with so much ups and downs... 😥

Maybe try to reach the team proactively to see if they could arrange an appointment before the scheduled one year? Maybe just need a longer med holiday?

https://www.bnl.gov/newsroom/news.php?a=111541

It's in a few weeks now so I'll leave it - in mmm interested in trying to get him some talking therapy too beucsee I'd like him to try and learn some alternative techniques to cool down rather than this flight mode he goes into

We have been on 30nfo4 about 4 months now. The top up 5mg is just 1 month.

Agree with therapy. I've been thinking to do CBT with mine for quite a few years now. But will hold it for later until we know how the medicine works on him.

I'm no longer sure if medication is a long term solution. So better start training for some better managing skills when they are still young and receptive.

We are at the end of second month...

If you could see symptoms reappearing after four months, it's rather unsettling ... Didn't imagine the tolerance would build up so quickly.

Sorry - just been dipping in and out of this thread. DGS aged 7 (I parent him) has been on 20 mg for about 6 weeks. He only takes in school and occasionally out of school if there's an event we need him to control himself at! He's a BMX racer and I found the medikinet dampened his performance and also it's a banned substance in the sports world. His behaviour at home can be challenging but not something I needed to medicate.

There was a marked difference at school at 10mg but not to the extent where his concentration and focus was the same as a typical boy of his age. So we upped to 20mg. Initially we thought this dose was too high as he was a bit withdrawn and just not himself for a couple of days. We persevered and that stage passed. I had parent;s evening on Tuesday and the difference since the last parents evening is transformational. Focussed, engaged, persevering, not getting into scrapes at playtime. The teacher commented that she had thought that the meds would dampen his personality, but they haven't. The review questionnaire she filled in this week wasn't perfect, but it was normal - what 7 year old boy doesn't talk when they shouldn't occassionally or act a bit silly - I want him to be normal not a robot but I do want him to focus, concentrate and enjoy learning which he is now doing abundantly. I've always known he was a very able mathematician but he has never been able to show the teachers this because he couldn't concentrate long enough to get any work done. His weekly arithmetic test scores have gone from 12 to 27 out of 30 and his recent NFER test gave him a standardised score of 112 (late summer born so this represents above average performance), up from 106 last term and pre medication. But more than that, he is now happy at school and thriving.

That’s the problem sadly, they just develop tolerance.

doctors don’t make it very obvious as perhaps a meds break could result in unwanted behaviour or consequence so in a way they can’t really force that break

they have had so many studies on tolerance and that’s exactly the reason why our kids are settled for a while and then Adhd behaviours are creeping back, till dose is adjusted. I’ve seen it in my own kid

break is an absolute pain but I’ve seen it on DS, after few days he calms down naturally, it’s clear the brain adjusts itself

@NurseP have you had any breaks at all?

Totally agree with this but I do believe it’s temporary

meds break helps brain adjust back to normal thankfully

@LoveMyADHD . Sorry for the typo he has 30 mg eqysium. The Dr told me thar breaks aren't needed unless his weight drops but maybe a day here and there may help?. Or do you think it needs to be longer at a time? I will ask her at the next rv.

@NurseP what can I say , I can’t really suggest anything just in case something not great happens when they re on break 😣

all I can say tolerance is a pretty documented fact, I for sure have seen deterioration and a strong need to increase the dose, when not on breaks. On the other hand via certain vitamins and regular breaks I can see he stays in lower dose and he’s more logical and calm after few days off the drug

perhaps if you as a parent think it’s safe for DC to have a break, you can try out and see if 30mg works again as it used to?