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

Well just for now we have stuck to the 5mg medikinet only because on hols! He’s been great but obviously we aren’t putting him under pressure like school. Just stuff tho like this morning we had a long breakfast in the hotel which he sat nicely and ate. No legging it off, no messing. We will try the anti stimulant when home but for the sake of a couple of days have stuck to this.

Worst thing tho is he is obsessed with his mouth, pulling his tongue, sucking his fingers, wanting to lick things. Anyone else got this?? It’s a shame as he was like this when little but grew out of it but now he’s doing it loads. DH driving and he’s currently got his whole hand in his mouth. Anyone else???

@carriebradshawwithlessshoes mine also seems more mouth focused at the moment on the drugs. I have NO idea why. Hope you had a nice break

That’s interesting. Started the non stimulant yesterday. Really really tired I hope that passes.

I’ve ordered the adhd book too miss h… thanks for that recommendation x

@carriebradshawwithlessshoes I’ve sent you a pm. In the general adhd meds book there is a chapter on non stimulants and it says drowsiness is a side effect for some but has usually settled after the first few weeks

Are you now on guanfacine? @carriebradshawwithlessshoes

How is it going now @carriebradshawwithlessshoes?

Ooo only just seen the post on this!

No the anti stimulant is atomoxemine (sp) but odd turn of events! So he stayed v tired on the starting dose of 10 mg. after 7 days he was supposed to move to 25mg. Also still loads of mouthing/ finger sucking etc. On day 6 he was still tired etc so I spoke to clinician and she said to stay on the 10 mg for a longer time so I agreed. However on day 7 it was like he hadn’t taken it, totally hyper. So I’ve moved him up to 20, he’s calmed but still loads of hand sucking.

I think I will move him to the 25 mg in due course but don’t like at all this oral obsession. The other ant stim you mentioned is apparently our last option so if this fails then I will try that. Overall I’ve found it does calm him down which is great and also stabilises his mood but the worst thing by far is the mouthing issues.

I think you ordered the meds book? Looking at that it says this on p177:

“Atomoxetine is a noradrenaline…uptake inhibitor, but so are both the stimulants…
If both stimulants have been tried and found not to work, it would be more logical to switch to prolonged-release guanfacine which works in a different way”

And p146 explains “atomexetine hardly every provoked tics…Nowadays many doctors would consider using guanfacine because it seems to suppress tics as well as treating ADHD”

So while I am not a hcp and have no idea about the meds really this makes it sound like it would be worth asking about guanfacine? If the mouthing continues?

It’s really great that it is calming him down though! These meds are such a journey aren’t they

Yes! I’ve asked about the guanfqcine and they are happy to prescribe.I would not say mouthing is tics tho which makes me think would he still mouth on the guanfacine??

How are you going on miss h??

Do all adhd meds make kids mouth things more???????

The book is v good by the way!

I almost wonder whether actually with adhd under control slightly more the kids are able to concentrate better not only in their work but also their asd behaviours such as special interests and stims? Hence better concentration on mouthing?!

How are your new meds now @carriebradshawwithlessshoes? Has the tiredness settled?

For those reading who want to hear about a first one month review of meds, we had ours with the ADHD Paed yesterday.

They said they would advise keeping the dose the same for now as both we and ds are saying concentration and focus are better, even though ds can still be hyper and excitable. He’s still very much himself and no side effects now he’s used to the meds, which is wonderful.

I’m actually really glad we are keeping the 10 mg the same as ds is much steadier emotionally and seems a lot happier at home and school now he’s on the medication.

Will keep you posted but I would say overall our experience has been really positive.

My key tips for anyone reading and wondering about meds like @indoctro are:

• side effects can seem bad for the first few days but can settle
• initial slight sleep issues can settle
• any medication rebound with Medikinet can be resolved by adding an afternoon immediate release
• concentration and focus gains can be gold
• meds can also help kids feel more emotionally steady
• MY TOP LEARNING POINT - I should have read the book I recommended upthread BEFORE we started the meds. It is invaluable for understanding what you see

@MissHavershamReturns after a lot of research we have actually decided against medication. We felt in my sons case the risks outweighs any benefits. So we are just managing it without.

Ah ok! Totally appreciate there can be personal risks @Indoctro I hope the non-medical management goes well

Thank you and same to you

Thank you for the update @MissHavershamReturns. I am so pleased to hear how well it is going for you and your DS. Partly for your sake and partly because it gives me hope for my DS.

His assessment is next week so I will report back. Please do keep updating.

I have the book now and have started reading it. Thank you for the recommendation

Really glad it’s useful @AlwaysFireFighting and I like your user name by the way! That is VERY much how I feel too.

Please do let me know how the assessment goes and I’m sure you have, but do prepare for it to be an emotional moment to hear it officially. Even if you know amd have deliberately pushed for dx, it’s something else to actually hear it.

I’m sure you’ve thought of this, but it might be worth buying some books aimed at telling him about the diagnosis of you haven’t already - will give you a chance to pre read them! We like “All Dogs have ADHD” which is very gentle and tells the child about the (many) pluses and challenges of ADHD through the medium of cute dog photos. Ed also like ADHD is my superpower by Soli Lazarus.

I'm finding these posts v useful. DS was diagnosed at 5 and I tried meds when he was 6/7ish but they really suppressed his appetite and made him slightly zombie like. He has managed without and quite well, but he is behind at school and in a special intervention class most of the time. I wonder whether I'm holding him back from concentrating, learning better and being able to catch up. But school and us can cope with him. Also not sure I'm in a good enough place to go back thro the rollercoaster of getting the meds and dosages right and managing the moods. He's also so so slim. It's guilt either way isn't it? He was previously on Equasym XL around 20mg but I can't cope with the bad moods after school as he has clubs he loves going to or after school club so I can work. Hard to know what the right thing is.

@pumpingRSI I really sympathise. It’s so hard to know what to do for the best for our kids and sometimes the choices involved just don’t have any easy answers at all. I’m sure you are working really hard to support him and not holding him back at all.

I wonder whether it might be helpful to read the medication book if you haven’t before - it’s very detailed on what meds to try if certain other meds haven’t worked? Is seeking a second nhs or private opinion an option for you?

On the XL (Medikinet) my dc had really bad afternoon mood swings too but the Paed added a small dose immediate release at lunchtime and this has literally solved the problem. I wonder if it’s worth asking about this too?

I’m no expert and not an hcp but am a mum muddling along in this new world of meds. So glad you find these posts helpful

@pumpingRSI I just reread your post and wanted to say I really understand about you feeling you have to be ready to go through it again. I’ve realised I need to have a strong RL support network to be able to manage and I’ve started to be more honest with people when I’m finding things tough. It doesn’t always help and I wish I could say I had all the answers. Is there anyone to support you in RL?