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

@NurseP it’s great to have you here!

@Freshstarts22 if you look back at my posts at the start of this thread you will see I said the same. School were very clear that they saw almost no improvement on the early dosages. My son also has asd and I was feeling very much as you do. But the difference on 30mg has been like night and day to before medication. It might be that you have the same, so might be worth just holding steady and waiting to titrate. Sending an un mn hug as I know what a hard journey this can be for us mums.

Also @Freshstarts22 you could ask to discuss the swallowing difficulties with the consultant- make contact through their secretary? See if you could have something easier to swallow? The medikinet capsules aren’t that big as they get higher but I don’t know about equasym.

Tbh the equasym tablets are really small, and now he has accepted them it would be difficult to change to anything else.
It’s CAMHS who have prescribed them, and we’ve had them here months as he wouldn’t take them, and they weren’t very helpful. But there wasn’t really a great deal they could suggest as he wasn’t open to anything. Just relieved he’s taking them now and hoping the next dose isn’t much bigger. Maybe 2 x 10’s would be better in that case.

I don't know if they get bigger but I can take a photo of one of ours to save you getting a prescription that can't be used if that helps

We have been on 20 and 30 and they were the same alrhohgh the colour did change

A new thread would be great, this thread has been such a help to me thanks everyone

@Freshstarts22 , I remember some med has liquid format (they are more expensive, so maybe proactive ask if your team can provide?). Not sure if equasym has it though.

@NurseP , I guess it's a common issue with daddies to be forgetful. 😂 I made two list yesterday for two occasions. He managed to miss multiple items from each of them.

The idea of bold and big reminders that are not ignorable is probably the best way to go...

@Freshstarts22 I know it's hard but try not to be too disheartened. It does sound like most need a higher dose than 10. Although we have seen a difference at 10 it's really not been huge. I'd say it's taken the edge off. Keep going and just know that you are at least on the journey now - if it's going to be 30 that's the magic dose you are closer to getting there than you were before.

Keep on going on.

Also my DH forgets everything too. Lists are great but if I'm not there nobody bloody looks at them 🤣🤣 we have gone for reminders for DS on his Fitbit and two Alexa reminders for both meds and melatonin.

Thank you, you’re right. The good thing is he has had no side effects either. So hopefully we can quickly move up and see an improvement.

@Freshstarts22 no side effects is a brilliant start. Honestly the difference as they titrate can be huge. Will keep fingers crossed for you.

@Freshstarts22 I wondered if you mind find this post of @danni0509’s useful from up thread, so have quoted it here.

Hope all well so with you @danni0509

I’ve created the new thread now here:

https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others

We can finish up this thread before we move across. I will try to keep an eye on post numbers and repost the link to the new thread as the last post of this one when we get close to the 1,000 post limit

@MissHavershamreturns , looking forward to starting the new thread! Thank you for this wonderful thread.

Thank you @Return2thebasic for being here!

I felt quite emotional writing the op on the new thread. It’s so good to have company on this road.

I finally found the exact guidance on crushing the med.

NHS - Methylphenidate for children

How to give children tablets or capsules

Give your child the tablets or capsules with a drink of water, milk or juice. Tell them to swallow the medicine whole, not chew it.

If your child has problems swallowing pills, then it's OK to crush standard tablets (Medikinet or Ritalin). Mix the crushed tablets with a small amount of soft food such as yogurt, honey or jam.

Important:
Do not crush or break slow release tablets because the medicine will not work properly.

However, if your child takes slow release capsules, you can open the capsule and mix the contents with a small amount of soft food such as yogurt, honey or jam. Give your child the mixture straight away and tell them to swallow it without chewing.

Just to add, I remember reading for the slow release form, the outer shell serves as the vehicle of releasing at different times and therefore should remain intact to work properly.

But it's a good news, for standard form, no problem to crush, whilst with slow release form, you can simply open the capsule without affecting the mechanism.

It's a positive journey which changed life. All worth it!

Yes, good to have you all holding hands to share the ups and downs. Thank you. ❤

Filling up this thread now so we can all move over!

.

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Another post

An extra post

Quick roll call before we finish this thread…

@AlwaysFireFighting @ArianaDumbledore @BucketOfPlumbers @Capricornandproud @Feetache @Fluffyslippersohyes @Freshstarts22 @Hels20 @HowToMakeFriends @KnottyAuty @Lizamac @LoveMyADHD @Marchsnowstorms @MummyMilla @OnePlusOneEquals @Plro @Premiumtube @Purplepeople12 @Return2thebasic @Starlightstarbright1 @Sweetpea84 @Waythroughwoods @WesternEasterner @Writingworries @belowfrozen @brushlaptop @carriebradshawwithlessshoes @danni0509 @someslt123 @snowtrees @rhubarb84 @pumpingRSI @duvet @dogoncouch @doglover12345

I hope I haven’t missed anyone who has posted and not already moved across - we are moving on to thread 2, so if you would like to join us on the new thread please feel free to come and update or just placemark https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others?reply=126014184

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