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

He is still on 30. Sorry the 40 was a typo. I was considering if his top up needed increasing. He has 5 mg immediate release at lunch time and it just takes the edge off.
Do you think a break from the top up would be beneficial or would it need to be a compete break. I am reluctant as he is just so destructive. Thanks for your input. Its good to hear from others with experience x

Hope this makes sense! My night shift brain is ready for bed!!!!!

@dogoncouch , hi, meant to reply earlier but just got distracted too easily.

Glad you DC is doing well on the med. It's such a nice feeling to see them to be able to perform and to be just like other children to function and to excel. In some way, I do believe an ADHD brain has its advantages as the brain is wired differently. So to see them use it to their advantage is almost like all those miseries could after all be turned into something like strength and they can actually build a stronger and more resilient personality. A wonderful thing to observe.

I understand that you did not opt to keeping increasing the dosage to until side effects are too powerful. We were like you, first surprised to see some improvements even at 10mg. The effect was almost instant - in the first day. It's also interesting what you mentioned about BMX and the med. I saw another mum mentioned in a different thread that her DD chose not to take med in the days when she had competition in sports. It took off the edge of speed and energy sustainability, sounds like.

We are yet to have teacher's feedback for DS's school life at the 20mg dosage. The teacher previously said she didn't notice much difference at 10mg. So we will see...

Again, glad that things are going well with your DS! Hope he enjoys a more positive experience from all aspects of life from here onwards.

@NurseP we still see a very significant reduction of ADHD behaviours one year on from starting in February 2022, with a break of only three days over Feb half term this year. We are doing another one week break over Easter.

@Return2thebasic we got great results at 20 plus 10 top up but the difference between 20 plus 10 top and going up to 30 plus 10 top up has been life-changing for ds.

At 20 he was doing much better with written work, able to concentrate, calmer. At 30 he had all this but also had much more self control, which stoped the problematic impulsive behaviours eg calling out which were such an issue for him at school. Also enabled him to gain the ability to melt down.

We decided to stop there on advice of Paed given the gains achieved, his ASD, his slight build and that she felt a total daily dose of 40 was the max she would usually recommend in those circumstances.

Gain the ability NOT to melt down I meant! He still gets tearful, but the drugs allow him to stop himself before a full blown meltdown. Before meds he was melting down every week at school, often daily. After meds he’s had one meltdown a term max.

I’m pleased to say we’ve seen a bit of weight increase here since moving to the new approach! I think partial meds break from the top up at weekends is helping plus the other changes we’ve made!

Just under half a kilo of gain on the scales in around a week and we also had a gp appointment to get a dietician referral so we are ready to go private for that if needed.

I was worried about doing that gp appointment with ds, in case it made him worry about food. He’s so anxious already that the last thing he needs is something else to worry about. But the GP was brilliant and instead of saying there was a problem just told him we need to get advice on the best foods to help us make him healthy and keep growing. It was a phone appointment so I was able to speak to him first and explain about ds.

Since speaking to the GP ds has been a lot more receptive to an after school snack if I remind him of the doctor saying you need snacks to help you you grow. This is adding an extra 200 cals to his daily food intake.

So a bit of cautious optimism here!

Great to see about your positive news @dogoncouch . Sounds as though you are seeing some brilliant results from the meds.

@LoveMyADHD how is your med break going? I hope it’s going ok so far. Thanks for all your support as always!

@HauntedPencil sorry to hear you are seeing unwanted behavIour coming back in. We found we had 4 months of excellent experience on 30 after very slow titration up to that.

We then started to see more anxiety and struggles for ds after Xmas (though nothing like before meds) which may or may not have been as a result of med tolerance. Hard to know as he was also getting quite light weight-wise and some change going on here too, which he finds hard with his ASD. Some level of anxiety is normal for DS sadly.

We saw a lot of upset during and after a three day meds break. But interestingly things are getting better again in the last week or so. So you might see improvements after a short holiday med break if the dr advises it?

@someslt123 so glad to hear you find this thread helpful. It has been a real lifeline for me. I don’t want to break ds’s privacy by telling lots of people around us in RL every twist and turn of the meds journey and they also wouldn’t understand. So good sharing on here!

This is interesting as the ability not to melt down is definitely missing here on occasion.

We've not had a med break discussed he has lost weight but he was overweight before as he was a bit obsessive with food and now eats more normally so it's hard to tell.

@HauntedPencil it’s not easy with meltdowns is it?! Sounds as though the weight is going in the right direction for your ds though, which is good.

Hello, just coming on here to say I've been lurking here for a while, finding this thread very helpful over the last few months while we've been waiting on a diagnosis for DS who's 9. We've now got the diagnosis and the plan is to start on 10mg over the school holidays. So I may be back soon to pick your brains!

@rhubarb84 glad you’ve found it good!

Really looking forward to reading your updates when you start the meds - hopefully they will really help your ds.

A little weight and diet update from us. Weight gain has started to go back up and in total ds has put on 1.2kg since we saw the Paed on 13 Feb (6.5 weeks ago) and he raised poor weight gain with us. Really relieved and now pretty hopeful to keep ds gaining and on the meds!

We are having a med break this week - probably for 5 or 6 days this time.

We (on med for

How many of us are having Med free Easter??

Hiya, tried to load a long message and then connection got cut off (on a ferry). Just saw my four words post.😂

To put it short, I convinced DH to give DS a med holiday, even though the psychiatrist didn't think it's necessary. We will see how he copes. A bit worried about when he goes back to med with an increased dosage (from 20mg to 30mg). But I'd want to know if he could cope with a break after all.

Will report back.

@MissHavershamreturns , so glad to hear the weight improvement! What a relief to know IT CAN WORK! Well done 👍! Have a fabulous Easter break and hope it's more manageable this round without the med. ❤

Well we started DS (age 9) on 10mg today and noticed... not a lot! To be fair the worst symptoms are at school, mostly inattentive, so we might not see much at home anyway.

We'd experimented a bit with caffeine over the last few weeks and had noticed it seemed to help him quite a bit. About an hour after he'd taken the tablet I asked how he was feeling and he said it felt as if he'd had a strong tea, but not as much as a coffee! He said he felt a bit more able to focus on his Lego.

Not going to give it to him again for a few days as he's on an outdoors activity camp which is basically its own form of therapy anyway, and we wouldn't be able to observe the effects... will try again on another day when we're around.

Medication review isn't for about 8 weeks so I guess it will be a long game discovering the right dose.

@rhubarb84 so interesting you said that

we tried a matcha drink today - advertised on dragons den as Adhd one!!- not sure I’m allowed to say the name though… he was bloody good for about 4ish hours. Zero calling out and just focusing on his book!!

it has caffeine but supposed to not give you a crash

10th day on med break tomorrow so will try it again

good luck x

Good luck @rhubarb84 with the first weeks on the meds. We didn’t see much positive change at first, as you will see from my first posts on this thread if you look back at those. But the impact on school work was there mildly even at 10 and at 20 there was a major positive impact. Hope it will be the same for you!

Very interesting about the caffeine! If you’ve bought the meds book mentioned up thread - Parents guide to adhd medication by Peter Hill (GOSH consultant with 40 years prescribing), he mentions giving children coffee some decades ago in a school where he worked. Never tried it, but interesting to hear you saw some positive effects!

@Marchsnowstorms quick Easter med break role call!!

Team Easter med break

@Marchsnowstorms
@MissHavershamreturns
@LoveMyADHD
@Return2thebasic

If anyone is missed out and wants to be added can they please shout!

@LoveMyADHD day 10! Wow - that’s an impressively long break. Apart from the return of adhd symptoms do you see any other effects of the break?

@Return2thebasic thank you for the encouragement on the weight gain! It’s amazing how a few apparently small tweaks made every day have made all the difference!!

I will look forward. To hearing how your med break goes and hope you are having a fabulous Easter break wherever your ferry has taken you

Argh, so having seen not much benefit in the day yesterday, DS couldn't get to sleep until somewhere between 11 and 12, poor thing, when he's usually sleep around 8:45.
Anyone else experienced this, might it settle down?