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Original poster

Starting Medikinet - any experts around?

1000 replies

MissHavershamreturns · 29/01/2022 08:18

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

OP posts:
Hels20 · 29/11/2022 19:54

@Sweetpea84 - poor you. Sounds stressful. How long has he been on Concerta? We tried Concerta - seemed to work for 2 days then nothing and we had to revert to Medikanet…

NurseP · 30/11/2022 03:04

I don't think we will take breaks unless strongly advised . I feel like it would be too much for him to keep missing days and he may get out of the routine of taking it.

NurseP · 30/11/2022 17:32

My sons reacher called today, we have been having regular updates. He has been having surges of pushing and throwing, being really frustrated and has started to bit himself. Not sure if this is sensory seeking as he is very hard touch or him being angry . Horrible to know he has had such a hard day at school.

HauntedPencil · 30/11/2022 20:36

Aw I'm really sorry to hear that Nurse - it's so tough.

Lizamac · 30/11/2022 21:21

Meds seem to be working for school but after school he is like a bomb. He is on 20mg which he takes every morning just after 7. We have the option of 5mg top up which up till now I have not given. Kind of scared it will delay the crash till later. He takes longer to settle in the evening for bed too. One thing I have noticed is nail biting so much when he is on the meds. Side effect maybe ?

HauntedPencil · 02/12/2022 21:09

DS has had a massive meltdown in school today - worse he's ever had even hitting out at a couple of TAs - I'm so concerned. Has anyone had this? He started on the higher dose on Sunday seemed buzzy and hyped in the morning - but argumentative and belligerent but hed usually snap out of that. Wonder if it's settling on the meds and the higher dose. He's devastated now been crying all night

NurseP · 03/12/2022 21:39

That sounds tough , pencil. My son also had a challenging time at school this week,pretty much most of the week really, lots of almost manic episodes, pushing and throwing. He does seem to be calming down now thankfully.

Sweetpea84 · 04/12/2022 10:53

Maybe something to think about. Somebody on my local adhd fb page said children with adhd etc find December very challenging. Schools don’t keep to their usual routines due to Xmas plays etc and it can be one big sensory overload. I’m wondering if that’s what happening with my son because he was doing ok and then he’s teacher mentioned he was fine last night day morning and then when they were practising their play he was all over the place and has been up and down since.

Sweetpea84 · 04/12/2022 10:54

Monday not night

NurseP · 04/12/2022 16:44

Good point sweetpea. He had a brilliant day yesterday so hoping things are settling for him.

HauntedPencil · 04/12/2022 19:49

Sweetpea84 · 04/12/2022 10:53

Maybe something to think about. Somebody on my local adhd fb page said children with adhd etc find December very challenging. Schools don’t keep to their usual routines due to Xmas plays etc and it can be one big sensory overload. I’m wondering if that’s what happening with my son because he was doing ok and then he’s teacher mentioned he was fine last night day morning and then when they were practising their play he was all over the place and has been up and down since.

I totally agree with this actually - in past years pre diagnosis it's been commented on and it's all the general excitement of Christmas on top - he's been complaining about the singing and they've been practising for their show and he's not enjoying it

HauntedPencil · 04/12/2022 19:50

NurseP · 03/12/2022 21:39

That sounds tough , pencil. My son also had a challenging time at school this week,pretty much most of the week really, lots of almost manic episodes, pushing and throwing. He does seem to be calming down now thankfully.

Glad to hear - we are a week in today - been very quiet and withdrawn over the weekend. When he was getting used to the last lot he was a bit up and down but we were on holiday so I guess he didn't have the additional pressure of school etc

NurseP · 04/12/2022 20:00

That's exactly what my son was like when he went up to 20 mg.

HauntedPencil · 04/12/2022 20:40

Are you a week in now nurse? It was a week today. I think after this I won't move meds in term time it's been stressful

NurseP · 05/12/2022 08:03

This is week 10 overall. Did a week of 5, 10, 15 then 3 weeks of 20, 2 weeks of 25 now our 2nd week of 30.

Hope that makes sense!!

NurseP · 05/12/2022 08:03

Meant to add that out week starts on a Saturday.

HauntedPencil · 05/12/2022 11:10

Ah ok it's our first week of 30 so hoping things will pick up over the week now

NurseP · 05/12/2022 14:13

Did you work your way up to the 30 dose? I really hope this is going to help him and calm him down!

HauntedPencil · 05/12/2022 20:41

Yes we did 5 x 2 10 x 2 20 xl and now 30 xl hoping to have turned a corner -a bit more himself today.

Original poster
MissHavershamReturns · 05/12/2022 22:44

For us increases can seem to result in a lot of unusual stuff, especially seeming more subdued. But it does seem to settle in time. I hope this is true for you @HauntedPencil and @NurseP

OP posts:
Original poster
MissHavershamReturns · 05/12/2022 22:46

We are finally into the NHS system completely now, with NHS consultant clinic now also in place, so for anyone considering the private journey, we took 9 months from first seeing the private specialist (for the start of the diagnostic process) to get completely into the NHS system. Our GP surgery seemed to think this has been fairly quick as well!

OP posts:
NurseP · 06/12/2022 07:12

I hope so too Miss H. He was very subdued going from 15 to 20 and unsettled from 25 to 30. So sounds similar

HauntedPencil · 06/12/2022 12:26

That's great news Miss H - I'm going to call
Today to enquire about being referred for monitoring rather than for a diagnosis and see if that speeds anything up. Costs wise we are down to £45 p/m for the meds unless they need changing and £175 per appt 6 monthly so it's not hugely awful

HauntedPencil · 06/12/2022 12:27

DS went from 20/30 and he's subdued in the morning and prone to flashes of anger which causes the issue last week - and that feeling he's lost control messes him about for days and days after

NurseP · 06/12/2022 15:39

Pencil, did the flashes continue? Seems very similar to my son last week.

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