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

Interesting about the protein, thanks. So it was a grisly night here for us. He has eaten half an apple and Frank some milk, he did not want to take the capsule this morning so we had to be a bit persuasive!!! I hope he takes it ok tomorrow!

@NurseP have you checked the leaflet on opening the med up? If it says it’s ok you could try giving it sprinkled on something?

A pp in the earlier days gave me some very useful advice. They said try not to focus too much on every up and down initially as the start can be so rocky. Things have settled for us, but if you look back to the early weeks we had some dreadful days. I hope things settle for you too.

@LoveMyADHD glad you like the thread. I love your user name. I believe I have ADHD myself and also love it in a funny way!

We also switched to a high protein breakfast for ds. We do eggs most days - omelette, boiled, fried, scrambled. Sometimes bacon to mix it up. We find a big breakfast really helps

Thanks @MissHavershamreturns . I did open the capsule this morning. The Dr did say that was OK when we were initially discussing. He seems a bit brighter this afternoon and has eaten a small dinner so I feel more at ease now. I think it was a shock to see him so unlike his usual self and looking so rough after having no side effects at all for the whole 3 weeks .

I appreciate people's thoughts with this. It helps to talk to people in the same situation. Thank you all.

DS started his Equasym XL 10mg yesterday, it doesn’t seem to have affected him at all positively or negatively. After 7 days he’ll move up to 20mg and I really hope to see some positive effects from it. He says he doesn’t have any problem concentrating (his view!) just remembering stuff. Was very reluctant to start the meds and I had to be very firm and basically say we had to try it to be able to say it wasn’t helping him.

Thank you, it's so nice to read posts like this. Will try and up the protein as well.

DS has been a bit wobbly this week - little bit up and down. It has been exciting for him thought as we've been on holiday - third day of the 20Mg equasym XL for us today. He was a bit grey and didn't eat yesterday but although he's not got his usual appetite today he's had loads of pudding at the buffet. I'm not seeing huge improvements with this dose and I think he possibly might need a bit of a larger dose - although this is peak excitement for him

My son really did noy want the capsule this morning. He pointed blank refused his ice cream that he usually has.Tried in a chocolate and he spat most out. Added the granules we could get to a syringe and did the test that way. Reckon he had about 10mg. Not sure what to do from here. 😭

@NurseP my consultant keeps on telling me I should never break down the long release as the effect is not what’s expected

would your doctor consider giving the short release which is easy to break and mix anywhere?

@LoveMyADHD the Dr did say it was OK to open these ones. There is something even longer lasting which cannot be opened I think but she said these were fine to open and sprinkle. I would like him to go back to swallowing with ice cream again. That was easier for all of us!!

Is it the texture of the tablet? My DS is complaining they are plasticky. It's 3.20 and he's just started getting hyper now (unusual situation as on holiday) but he did seem a bit calmer than yesterday

Yes I think you can split these ones I some instructions they could be mixed with apple sauce if needed - maybe worth a chat with your dr. Ds preferred the other ones but he is taking these with a bit of a bother and fuss.

It is hard giving medication when you dont know exactly what they are feeling and if there not very good at expressing that.

Does anyone know what to do if your surgery rejects shared care from psychiatry uk, a friend GP told me I should write and complain, just wondered if anyone had experience of this?

About tablets @NurseP the amazing medication book by Professor Taylor recommends for any l.o.s who struggle with taking it to try ‘training’ sessions, starting with hundreds and thousands and then working up through bigger cake decorations to something the size of the capsule. Might be worth playing with cup cake decorating and sprinkling on hundreds and thousands and then eating the cakes and crunching a few left over toppings? As a possible way to try to make it less scary

I can completely see why it’s tricky - I take a different prescription med a similar size to the medikinet XL and don’t really enjoy the sensation.

@duvet have you tried asking for a telephone appointment with a gp to discuss it? This helped us - not psychiatry uk but we’ve got shared care in place with a private consultant now.

Was it a gp or admin staff who said no?

@MissHavershamreturns he can swallow a tablet. He manages the melatonin fine. I worry that he now associates the capsule with feeling ill at the weekend.he usually swallows it fine with a small teaspoon of ice cream . I just don't know what to do if this is the case. Thank you.

@NurseP that does sound hard. I hope things settle in the coming days.

Ah that could be likely bless him - hopefully as time goes on and he hasn't been unwell the association might get easier. DS has been eating pretty well today and not looking grey etc at all

I hope so. Its hard when you can't get spares to allow for ones that are spat out etc!!!

The granules went down on a spoonful of calpol!! Hooray!! And he seems much more himself! Phew!
Thanks for all the input and support over this! Such a great thread!

@NurseP wooohoooo!!! Well done!!

@MissHavershamreturns thank you, yes trying to get to the bottom of it, but you know what it's like trying to contact the GP these days .....

The capsule granules sprinkled on calpol seems to be working!!!

Well, one week in on the starter dose of 10mg Equasym and my younger DS has actually had a pretty damn good week! He seems calmer and more collected, paying more attention in class and his writing is actually legible. He moves up to 20mg on Saturday, so we’ll see if that’s the dose he needs or if the starter dose is actually enough.

My son has bitten somebody 2 days in a row. Do you thinknthey could be Tablet related? He has bitten maybe once or twice before bit not for a long time. 😔