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

I'm having a bit of a wobble today, not sure why.

Just a bit 😔 about the idea of him needing this every single day for the foreseeable and feeling a bit 😔 about the fact that in order to successfully access education and thrive in education he needs to take these pills. Is it him that 'needs fixing', or it is more the system?

Doesn't help that I scroll Instagram at all hours and often get homeschool people preaching about the benefits of unschooling (which I totally understand and support). Unfortunately it's not an option for us but I some of their messages really hit home. I also stumbled on a reddit thread about medication and it was full of adults who were saying the medication used to make them feel numb and just 'flat' and they feel angry they were made to take it to just get through school. I wish I hadn't read it but it has sown some seeds of guilt/dread/regret. I guess that's just motherhood though, I'd feel equally guilty if I didn't medicate him and just watched him struggle on. I suspect I'd also feel guilty even if we could home educate, I'd worry it wasn't the right choice for him. So yeah, guilt absolutely everywhere and I probably need to step away from social media. I don't suggest anyone go to Reddit!

Yes he definitely seems ok about taking it now he knows it didn’t taste bad or make him feel terrible.
The dose is 10mg. Haven’t really noticed anything, and no side effects today. He’s been quite quiet tonight and seems tired though but that could just be because it’s the first day back at school after the BH weekend.

I totally understand but try and think of it from a different angle. Rather than something that’s ‘fixing him’ try and think of it as something that’s helping him. I feel the same as you but years of struggling has left my son with poor self esteem and he is on track to have really poor mental health in his teenage years and I know how bad that can get. I didn’t want to medicate but continuing the way we are is not going to end well.

@WesternEasterner I know exactly what you mean. I felt awfully guilty for quite a long time, even though it's more than obvious that he's not coping alright to develop as his peers and he has lots of potential but being held back.

I feel less guilty lately (may still wobble back and forth at some point of time). I start seeing it from an angle about "facts". It's been agreed that ADHD brains are wired differently and they have their inherent brilliance. But without dopamine, those merits can't thrive. The medication gives them what they need to allow them to be who they are supposed to be and allow them to apply their unique genius into life. It's like what @Freshstarts22 said, it's a "help", but not a "fix".

Most of the ADHD children/adult have other neurologic challenges as well. We are lucky living in a time/a place where these medication are available. Without them, life would have become even more of a traumatic experience and insufferable for some and their loved ones.

Try not to be drawn too much into social media. There are way too many noises than truth. Your life and your DC's life are unique to others and your decisions are too..

@Freshstarts22 , shall I be embarrassed to say "whenever DS falls quiet these days, I feel anxious and guilt", after having just written the above? 😂

But honestly, whenever he stops cracking jokes, being playful or in high spirits, I feel the drug is to be blamed!

@WesternEasterner @Return2thebasic @Freshstarts22 I think we all have parental guilt built into us, no matter the situation really. If we they didn’t have adhd then we’d be feeling guilty about something else I’m sure.
I think a lot of those who felt numb or flat when on the meds were just on too high a dose for their needs, doctors seem far more aware these days of tritiation and starting low and adapting to needs rather than a one size fits all approach in regards to adhd.
No parent really likes having to medicate their child, I’m fairly sure even those with diabetes and asthma feel the guilt and in all honesty I think it’s because we “made” them and it’s a medical flaw that needs addressing, and the thought that for a long part of their lives/all their lives they will need to continue to do so.
And as to my ds2, I think now he’s realising how much less in control of his emotions he is when the medication has worn off. Although he is mainly inattentive, I’d say 70/30, he’s certainly up for arguments, takes things extremely personally, wants to win, wants things now, susceptible to in game spending etc etc, that I see the medication as a way to help him be more aware of his actions/words too. It’s helping him mature in some ways - I really was dreading the teenage ds2 in some ways. And also how he could be as an adult and future partner/husband to someone.

Listen in all honesty… it could be worse ..

id rather pump him Medikinet rather than leukaemia meds ….

in my head we all have a cross to carry, I d rather have this one !!!! Whatever Insta is showing you, I promise you my dear no one has it perfect 😉… I mean who wants homeschooling ?? If you were a kid , would you like it ?

i know it’s really tricky to comprehend now but… you need to learn to love his adhd brain , when he goes done with the education years which are the hardest, he ll put that super focused brain into good use , like no one else can do 😉

@WesternEasterner - poor you having these wobbles. We all have them. What I can say is that I know of people in 20s who used medication as children and then reduced reliance as they got a better idea of how to manage their issues. And now I know of some late teens who only use it for exams and sometimes study. It doesn’t mean your DC has to be on medication for ever.

If it helps my son loves school he loves his friends and he would not want to be home schooled. I think as an option for him it would be a disservice for him, and taking the meds means his brain slows down enough for him to actually learn and fulfil his potential.

Getting diagnosed and having meds has been hugely beneficial for him from how he can do his hobbies to friends to school work etc

Things were much harder for him before

Same and this is how I view it too. As they mature they might not need to.

Can I ask if anyone uses melatonin? ds struggles to sleep in the summer mitnhs and historically this has led to June/July at school being a real stress as he's really struggled

I've been given melatonin 4mg a day in 2mg tablets taking one or two per evening.

Wondering if anyone else has tried and has any tips or how it's gone. I think I'd look to start on the 2mg

I have, but we don’t use the prescription one, just some drops from Amazon

works well but you need to start low as it can increase nightmares 🙄

Ok thanks - this was prescribed and the dose sounds quite high! How much is in the drops? He's looking a bit wrung out already love him and it's only may 😬

So 1/4 of teaspoon is 3mg
its quite strong.. if I were you I’d start really low (you don’t want him waking up middle of the night due to dreams .. 😳)

have to say I love the posts of support here 😍

I can imagine us all in a pub one day with our very lovely kids running up and down 😂

Bloody hell! I don't. I've just had to pay £47 for 60 tablets cos it's private I didn't realise you could buy it. I'll see how he goes on 2mg.

I know imagine that! A very raucous meet up that would be

Western Easterner, I think it's fair to say that most of us have had many many wobbles!

We don't lie as a family and when we started meds I told my son that they were 'listening' tablets. I felt awful. He's been on them around 2 years now and he's 10. He's old enough now to discuss his condition and the medication, so recently I asked him how he feels about taking the meds. He says he really feels the benefit and doesn't want to stop. Like others here, I think that as he grows up he will decide when/if he needs to take it. For now they give him the opportunity to show school what he's capable of. They truly had written him off as being uneducatable.

The paed prescribed melatonin 2mg and they have worked a treat. He only needs them when his dose is increased, for a few nights.

Thank you so much everyone, I've just had a little cry (this keeps happening 🤣) as you have all really really helped. What a great space this is.

It's been a hard day here as DS lost it at school and got removed from the classroom despite having his meds. He was being very disruptive.

It feels like a real set back but I have to remind myself that he's still just a kid and these things will happen.

I did wonder if he'd maybe had too much meds as he had his top up quite early - anyone know what the effects of having too much meds would be? I suspect it wasn't that but was curious.

He didn't eat a single thing all day other than a few grapes which probably contributed 🤷

We are on melatonin. We have a prescription for 3mg and it's helped a LOT. Previously DS took 90 mins to get to sleep, now it takes around 15. I am worried about using it every day but at the moment he needs the sleep so I'm carrying on. The consultant didn't say we couldn't use it every day but I do plan to double check.

Too much dopamine could lead to aggression
what he’s actually slow release dosage and when does he top up with slow release ?

Hmm wasn't aggression, just hyperactivity and silliness that he couldn't stop.

He usually has 10mg of slow release at 7 and then 5mg at 2/2:30.

But today DH forgot it (😑) and so he didn't get it till 8 when I called from work to remind him (🙄). He then got his top up at 1:45 for some reason and was really hard work from 2:30 till the end of school.

It's probably a coincidence as the dosages are still quite low - we are going to titrate up in a week or two. But I did wonder if it has just been too much as he probably didn't need his top up at 1:45! As the Equaysm does work for us for a good 7 hours.

I also really don't want to over analyze every little thing!

Seems really low

when did he start meds ? Have you increased dose since you started?
does this dose actually work for DS?

We only started just over two weeks ago. Consultant said she predicted final dose likely to be around 20/30mg which tallies with what others are on. Probably more likely that the dose is too low than the top up was too early.

The 10mg definitely helps to a degree. He is more able to ignore distractions when working and his focus on his work is better. That being said, this is just what I've noticed at home. I wouldn't say it's been 'revolutionary' or drastic though. Haven't spoken to school yet, am doing that early next week. We have had absolutely no side effects at all bar a lack of appetite at lunchtime.

The top up is again long release ?

yes agreed seems too low that too much or wrong timing

No, it's a quick release I think. Just regular Medikinet. He has Equaysm XL in the morning. 🙂

DS's teacher said that the behavior was quite out of character. Before meds it was rare that he'd be so silly and disruptive that he'd have to be sent out. So I guess that's why I wondered if it was meds related.

It's such a journey.

@WesternEasterner that’s really interesting
our consultant said he’d never mix those two (equasym and Medikinet ) as they have different mechanism!

hmmm…. Is there a reason he doesn’t get Medikinet slow release in the morning ?

for me this seems meds related