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

@NurseP really sorry to hear that. Do you know what time it happened? My ds didn’t do that exactly but had really uncharacteristic rage when the medication was wearing off in the early/mid afternoon. With topping up he was then ok. Could it be similar?

I think in my medication leaflet there were lots of potential side effects including anger iirc. Might be worth looking at that to check too and definitely mentioning to consultant.

@OnePlusOneEquals that sounds like an amazing result! Really glad to hear your ds is having this level of benefit already on the 10 dose. Hope the increase goes well and that he gets even more benefit from that next dose!

I was always wondering why we were increasing for my ds and whether it was the right thing to do. The ADHD medication book by Professor Hill says that it’s really important to keep going until you reach not just a dose that’s helping but the optimum dose. He says a common prescribing error is stopping too soon as then the dc doesn’t get the true level of benefit they could get from the regime.

I found this really reassuring that we were doing the right think by going up and in the end the difference in level of benefit from 30 compared with 10 for my ds has been really profound.

@OnePlusOneEquals bet that feels amazing!!!

@NurseP might be what MissHaver said but sometime they need time to adjust you know…we had all sorts at the beginning including tics but everything is gone
Is it Equasym you’re using or Medikinet? Are you private? Just asking ti check if it’s easy to change medication type etc

Sorry to hear that Nirse - Ds had a real bad one last week just before the med change on the 10mg x 2 but they were forgetting the lunch time dose a lot or giving it late - we've found it took a good few days to start to even settle on the equasym after that but he seems more level the past few days, even though I did think it was immediate acting we are definitely finding he settles after a few days and feels weird the first little while. I hope the biting isn't too stressful to deal with

That's great news one plus one - interesting to read that too miss H - I feel that the 20 mG isn't enough for us - he's feeding back that too he still feels focusing etc is hard.

It’s just such a relief @LoveMyADHD and @MissHavershamreturns you always wonder if it was the right thing to do putting them on the meds, but it really feels as if a big weight has been lifted this week off my shoulders and I feel going forward that when he starts high school next year he’ll be prepared and on target and the teenage years might just not be so bad after all.

@OnePlusOneEquals is he starting secondary next year? I mean walking by themselves etc without meds.. I wouldn’t even imagine!!

like OP said keep on going till he finds the perfect dosage! Well done amazing work!

@HauntedPencil how old is DS?
is 20mg equasym similar to Medikinet?

20mg wouldn’t cut it for us… we need 40 to function!

He's almost 10 but he's pretty large for his age - 98th centile for height & weight and he is quite obsessive about eating and food which I think is related. It's like he's down a notch but he's still struggling a bit...

This has been worrying me too pre diagnosis and this journey - his older sibling has just started and I couldn't imagine him doing the same stuff without getting in a right mess but I have a glimmer of hope now 😬

Eh ok.. DS is 10, he’s on 25th centile and he still needs 40mg
I totally get dosage also depends on how bad Adhd is plus how quickly medication is metabolised but your dosage seems bit low….

when did you switch to 20? Would you go back and ask for increase?

Yes it's only been a week or so we are just starting out - he has another appt in 3 weeks so I'll mention it then & see if he can try a higher dose

@HauntedPencil is it private or NHS? If private (and only if you feel you want to) you could email them and they can send you new prescription

obviously depends on doctor but that’s what I did a couple of times

We are a month in on
medikinet xl 20mg daily. My 9 yer old says that it helps him
concentrate in school. I have noticed that he is constantly biting his nails
and wondering if this is a side effect ?

We have our first rv with paediatrician on Thursday. Have to say we haven't really noticed any change in his behaviour.This is the second week on 20mg. I Wonder if we will increase.

Lizamac- do you think the nail biting is due to feeling more anxious or on edge?

Good luck nurse - DA first day back at school today - but anxious as he'd had a meltdown before half term at school. All ok & a lot calmer they said but it wore off in the early afternoon he was a bit jittery in the evening

Have school noticed an improvement nurse or no?

Ours is in a few weeks.

@HauntedPencil I haven't really seen any difference . The school bus assistant says he is a bit calmer on the bus but we are still having lots of throwing and jumping around!

@LoveMyADHD yed he is starting next September. Though to be fair he’s fairly street smart, we live in a village and he plays out with friends and we’ve not had any problems. He is also home alone for 15 mins one morning a week and has to see himself out the door, lock it and walk to school. Saying that, a friend calls for him and school is literary around the corner and the other boys mum is on hand in case of emergencies. With my DS the issues with his adhd are his inability to concentrate and focus in class and then the frustration and anger that follows that.
He does seem much more settled though, the only thing that really is an issue is the ‘come down’ after school. I make sure there is plenty of food on offer and a chance to decompress. But he still has a time where he is angry and punching/throwing things, so am trying to find a way to distract him and also let off some steam.

The appointment went well. We are going to 25mg for 2 weeks then up to 30. Hope to see some effect just give he is not unwell for a couple of days again!!

He has had 25 today. Seems OK so far.

Hey all.

Hope somebody can help me although my son is taking Concerta? My son is nearly 7 diagnosed adhd and we’re in our second week of Concerta. He’s on the lowest dose at the moment. I’m just wondering if anybody else has experience of the medication making their child stroppy first thing in the morning and then chilling them out for the rest of the day? It was quite upsetting to see my son being quite rude to his friend this morning and me he says he’s tired but he seems quite angry. Is it the medication making him tired he’s asleep by 8pm and wakes around 7 so he is sleeping.

should I keep going as he teacher says it is helping him with his work and after school he’s mostly lovely and so chilled.

Thanks

We tried Concerta and it didn’t work for us so we are back on Medikanet. Our son is 7 too. You are lucky if Concerta works because it means they don’t crash as Concerta works for longer.

I would keep going. When our son is crashing from Medikanet he gets belligerent and difficult but it has made a massive difference to his school work and his ability to learn…it’s not perfect but the alternative is far worse…

My DS has improved at school a bit but has got this week a bit stroppy around the edges screaming at me when I ask him to do something saying stop shouting at me when I'm not and saying I'm not listening when he's ksit making silly excuses for things and I'm trying to talk rationally to him. It's been a tricky week but school are saying he's improved there and I think for us too this is the most important area - I hope to adjust the dose next week and see if that helps.

He was manic and all over the place without it at school so there is no easy solution

He's more grumpy in the morning and chatty/manic in the afternoon I've noticed. That can be really hard to manage when it's bad

Just had an email from my sons consultant and he has said to continue at the moment as this is a side effect and He will hopefully adjust. He was better this morning but it’s so up and down.

We have exactly that without the pill… chatting like crazy, sometimes he’s saying some really weird things like calling me his Royal Highness!! 🤔

I do wonder sometimes if medication makes the non- medication days worse (somehow affecting the brain even temporarily) or perhaps it’s me really getting used to the amazing benefits of the medication and not being able to live without it 😳