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 would not swallow the concerta this morning so I gave medikinet instead as didn't want to go without! The consultant did say that would be OK. So I'm a bit stumped by it all now!

Oh goodness - are they v different looking?

Yes, very. One a green capsule and the other a long white tablet. I will try concerta again today bit not feeling very hopeful!

That sounds so hard @NurseP. Could you try the method suggested in the meds book - cake decorations or sweets that look similar then work up to the tablet?

I assume it can’t be crushed due to the slow release?

There’s another idea on this page and also a few others:

www.netdoctor.co.uk/medicines/a5249/how-do-i-get-my-child-to-take-their-adhd-medicine/

”Some children find it easier to swallow tablets with a thicker liquid, eg fruit smoothie, milkshake or yoghurt drink.”

It does say that unfortunately some children find it hard to take concerta

He can swallow the tablet no problem. He just won't! He took it on Friday on a spoon full of baby calpol. The other option is a lunch time top.up which is not the end of the world!

Lunch time top ups have been working really well for us for a year, so definitely worth trying.

Quick update on the weight issues and appetite suppressant side effects we’ve been seeing since going to the dose of 30.

DS has put on about 1.5 kg since the Christmas holiday which I’m really pleased about and we just need to keep going now. He’s only about 8th centile according to NHS BMI calculator, so still some way to go to get him around the same weight/height ratio.

What’s working well for us is very hearty breakfast and also deliberately introducing a daily supper meal/bedtime snack. We have discovered we can get 600 cals into ds in the morning with eggs, waffles, yoghurt. Then a bowl of high dairy ice cream as pudding eg after dinner and then supper/bedtime snack eg cheese and biscuits, bowl of yoghurt, pancake.

I’m very much still going with the fortifying and adding an extra heaped tsp of butter to eg pancakes, omelette, potatoes which adds an extra 75 cals.

A small matchbox size piece of cheese added to anything gives an extra 125 cals so everything also currently has cheese in.

It’s good to see the dietary change is working and now I just need not to lose focus so he starts to slip back. As he isn’t that hungry it’s very much down to me presenting tempting food!

Wow!
amazing update @MissHavershamreturns !

really happy for you xxx

@LoveMyADHD thanks so much!! It feels like a big achievement! I don’t know if anyone else feels like this but the meds, food and SEN paperwork are like a whole second job!!

How are things going your end?

@dogoncouch how are things with you now you’ve had a bit longer on the meds?

@HauntedPencil and @Hels20 are you on half term? If so I hope you have a good one.

Big wave to everyone else who has posted recently. I would love to hear updates if anyone has any they feel like sharing

Oh yes @MissHavershamreturns kids with Adhd is 2nd, 3rd job, very difficult to describe to anyone with lovely quiet compliant DC 😆

we re very good, DS did fab on his 11+ which was massive given his adhd was holding him back for so long (thank God for Medikinet basically!)

on half term and he’s on meds break but not bad at all given he’s on couple of specific supplements that really support him … we wanted to try reducing to 20mg after half term but there is supply issue sadly … do you not have this issue at all

Thanks for asking, So DGS started on 20mg on Tuesday - so 4 school days. The first day, he was emotional and spent much of the day in and out of the welfare ladies office, suggesting maybe this dose is too much. I decided to give it a second day before contacting our nurse. It was better. But I checked in with his teacher on Friday and this is what she wrote:

I think after the initial day on the 20mg, things have settled a bit and I have seen further improvements in DGS's concentration. He is much more willing to stick at tasks he finds hard and has been able to work really well with his partner on paired tasks too which is something he found challenging before. This week he has begun to understand column addition and subtraction too which, as you know, was something that was frustrating him. Handwriting is getting better.
Although very slow, he is really trying hard with this now. Generally he is calmer, in trouble much less for behaviour and seems to be having less issues with losing his temper at playtimes . He can sit still for much longer periods of time and is not rocking on his chair so much - all good news!
However, as you said he might be, he is more emotional and tearful than usual and seems to start tasks off, get very engrossed and really tries his best but then is upset if we have to stop and move on to something new. Because he is working slowly, he is cross with himself for not finishing but I have told him not to worry about this for now. He is also complaining that his ankle hurts or that he doesn't feel well generally and this has stopped him from joining in PE this week. He has asked to go and see Welfare Lady quite a bit about this. Normally he loves PE and can't wait to join in so I wonder if the medication is having an effect there?

What do you think of this? Does it sound like the dose is too high?

He won't be taking his meds much this week as he's doing a lot of training but I will give him it on the day we visit my mum.

@dogoncouch is this 20mg Medikinet slow release? Did you get this recently? We re told there is shortage nationally….

I would really ask the doctor on that ankle issue… Medikinet can deplete magnesium so a pre-existing issue might get worse perhaps…

Yes 20mg slow release medicines. He’s prone to a bit of opportunist hypochondria - it hasn’t stopped him playing football at playtime and training on his bike. But will keep an eye.
He has always been prone to hyper focus on the things that interest (his sport but other things too) but this sounds like he is hyper focussing on whatever he is doing and stopping him transitioning to the next task. I will speak to the nurse this week but wondered this sounded like the dose is too high?

Thanks all - after a really really good few months DS really lost it in school the other day - three bad incidents in one day then came home devastated and crying and really sorry.

Does anyone else get this? It's just like now and then he will have an day when he is absolutely on one, and it feels like he can't stop it. Prior to meds he did used to have bad weeks - but the incidents were more frequent but much less bad.

Any tips would be appreciated it's really knocked him back and affected his self esteem and obviously not to mention he's upset some other people.

@HauntedPencil , hi, sorry that I don't have similar experiences to share. I'm sure you will find someone who's very experienced either other parents or the experts in the field who could shed valuable light. Really feel for you to see him getting knocked over again and again by this kind of sudden dip.

I've just come across this article which might help. https://www.additudemag.com/time-to-switch-to-a-new-adhd-medication/?src=embed_link

Don't be fooled by the name of the article. It's simple talking about some ways to tackle similar sort of problems.

Good luck for finding the cause and fix it!

@HauntedPencil I’m so sorry to hear this. It’s really hard to watch this as a parent, as I know from experience.

I’ve found similar with ds in that he’s having far far fewer emotional outbursts. I’m not sure if those he does have are worse on the meds or not but I haven’t noticed any particular change.

We definitely still experience ups and downs and ds defintely gets upset by it but I try to say setbacks are normal, to be expected and are ok. If I’m honest I get upset too, but then try to remember it would be weird if everything was totally plain sailing as he has both ADHD and ASD. I’m not sure if any of this helps, but sending sympathy.

Thanks so much both - yes there is a bjt of a pattern in that it usually end of term, end of the week and close to an event he's looking forward to and so is excited - and I expect towards the end of term in school things are a bjt out of routine. What I can't work out is how to stop or lessen it it's so sporadic and out of the blue on the days it happens

@HauntedPencil of interest does he get meds breaks on weekends or half term?

Still no joy with swallowing the concerta! I think we will have to stay on the medikinet/eqysium and consider a top up at lunch time .
The medikinet does seem to suit him so I am not upset about this as an option. I hope the eqysium doesn't have any effects when we change to that!!!