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

Same it's as if it all stores up and it all needs to be let out!

My son is starving after school!!! Literally eats from the minute he is off the school bus!!! I thinknhe is a little calmer at times but no real significant change. We have one more week of 25 then upto 30 so we will see.

Exactly spot on @HauntedPencil !

@MissHavershamreturns Just catching up as it’s been a busy few weeks so I haven’t been on MN as much as usual.

For those just started the early weeks can be a bit bumpy and then things often settle. I hope things will calm down for everyone soon.

Why didn't it work?
It's good for us but we get a manic phase 9-11 pm

Hi all - just a note to say we had an appointment yesterday with DS & consultant - all good health wise no issues with weight or the tablets. We are going to up to the Equasyum 30 mG as his teacher has said he's improved but could improve more and it's visibily losing effect at 2pm - wonder if the higher dose will last longer I had a lot of questions but only managed to ask a couple as DS was so full of beans in there. Still quite positive. He's decided to keep notes in a book and the difference in his handwriting since starting meds a few months ago is really noticeable so that was really good to see.

@HauntedPencil that's good news! My son is going up to 30.mg of medikinet on Saturday. He has still been very hyper in the morning bit more calm in the afternoon and able to engage more. His teacher says he has moments where it is like he has a sudden rush of adrenaline and is desperate for sensory input and then we have the throwing and pushing. There doesn't seem to be a trigger. I hope the 30 sees more results. I'm struggling to not be impatient!!!

Same day as us! We can swap notes.

@HauntedPencil and @NurseP we’ve seen excellent results with 30 medikinet plus a 10 top up. Will look forward to hearing how it goes!

He hasn't been off colour with this increase which is good. Although appetite definitely de reased. Very unsettled today, just desperate to go out but what can you do in such crappy wet weather?! Glad 30 has been good for you. I hope my boy sees some results soon!

Quick update from us. We’ve now heard ds is having very few meltdowns at school since being on 30. Only two since September, compared with quite a number every week last school year before medication.

This is such a massive win for him and I think he’s now able to find the headspace to pause and use his emotional calming skills he has been taught in speech therapy when he does feel upset, because the Medikinet is reducing his impulsivity.

How is everyone else?

@NurseP that sounds good so far. I know it’s horrible when they are unsettled, but no major side effects is great news. We’ve had to encourage ds more with eating since going up to 30, but he is eating a good amount still.

My son eats well in the evening so not too worried, just feel so sad when his lunch box comes home hardly touched. 😔

My DS is doing well during the day on Equasym 20 XL, but he’s not getting to sleep till after 11 and is refusing to take the prescribed melatonin. I’m just wondering, as his evening behaviour can often be not so great when the meds wear off, if anyone can tell me if going to a longer lasting med would help with both of these issues?

My DS had his first yesterday - even though he says he isn't hungry he can just eat through it to be honest before I was a but worried he had food obsessions as he was v greedy for want of a better word, eating a huge dinner trying to take leftovers getting upset over food etc and now it's more normal eating - he'll have a dinner and not try and take his siblings food etc!

He was a bit quiet in the afternoon but he seemed ok. First trip to school today.

I hope he won't need a top up as they can't reliably give him one at lunch

That's great news Mrs Havisham
Re the meltdowns - we've not had many either since sept.

Staff were reporting his meds ran out at 2 and he was v hectic for the last hour of the day so interesting to see if the 30s will help him last a little longer

I'm really not sure - shame he won't take the melatonin we've not used it yet but I've heard it works wonders - not being able to get a good nights sleep dosent help at all does it - and so hard for you too

Hi, a quick update, 6 months on and the Dr is now applying for a shared care agreement with her GP as she's now stable on 30mg. The difference has been noticed by her speech language therapist and also in her tests in school, she's jumped sets in science since she has been on this medication, it really has worked wonders

She starred getting migraines a week before starting the medication however (turns out she had covid), and they've been pretty non stop since. I've tried to get a face to face with the gp but so far have only been given phone call appointments where they say it sounds like migraine, try the pharmacy. I finally have a face to face appointment on the 5th December, and a letter from her optician requesting a neurology referral as she failed the peripheral vision test twice, so I am desperately hoping the doctor doesn't fob us off again

Hope uou get some answers, Purple. That must be really worrying.

My son has been really.unsettled Sunday and Monday. Lots of throwing , crying and screaming. Not sure if Saturdays increase to 30 mg is anything to do with it . Feel a bit wobbly about the whole thing really .

@NurseP you giving it on Saturdays too? Maybe give a break in the weekend?

@NurseP

I found my daughter was far more fidgety and stroppy in the forst couple of weeks we went up a dose each time, but it did settle.

Maybe give it a couple of days and he'll hopefully settle down a bit

Not sure why my post above was half in bold!

I've had this everytime DS was a bit teary this morning but he settled down after a bit. Sorry to hear you've experienced it, when we came back from holiday and he started on the 20s he was a bit sad/angry in the evening but the following weeks he was totally fine so hoping it's the same

Thanks all.

We weren't told about having a day off the meds. I will ask at the next rv which will be in a week or so.

Hey 👋

Hope we’re all hanging on in there. Well we had a great week last week thought we’d made a break through but the last 2 days it’s like he’s not on them. Being impulsive, rude, calling out in class! Can medication just wear off overnight? I’ve managed to book a phone call with his consultant on Friday. What will be the next step? Anybody else see this happen. It’s so soul destroying and I feel desperate again :( he’s on Concerta.

Thanks

Mine said if we wanted he would be able to have a break at weekends but we felt this was too "up and down" as he seems to take a few days to settle in on the meds. She said so many kids do stuff at the weekend now they tend to take them - it's maybe beneficial jf it affects the kids appetite etc so take breaks - we won't at the minute I don't think until he's really settled down