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

I understand too as I have a very small and light 6 year old who is only just over 20 kg. My advice for what it’s worth…

1. With any child who is young or slight or just sensitive go ‘low and slow.’ With any meds.

1. From our experience there are 3 distinct phases. Phase 1, his body reacting to a new med. Phase 2, seeing genuine side effects (not to be confused with phase 1 although I have mixed up the 2 on a few occasions!), phase 3 the benefits. For us, with both medikinet and strattera phase 1 was the same. No appetite, v v tired. However, with both these passed so I would say it’s worth sticking out as they did both go. In terms of phase 2 side effects, on both meds and by far the worst thing for us has been lip licking, wanting to mouth everything. In fact I’m going to have to go to GP soon as his mouth is red raw. I will see how things go over next 2 weeks but this could be a dealbreaker for us I’m just not sure. This is the biggest downside. He was even licking the table today 😔. On the medikinet too there was more instability in terms of his behaviour. More ups then huge downs. We aren’t seeing that so much on strattera.

1. The benefits! On medikinet absolutely, much much calmer. On strattera we are on week 2 and it takes up to 8 to see benefits. Some calmness but not to the extent of medikinet, I’m hoping to see more as it builds in his system.

1. For v young or light or sensitive children I would recommend a non stimulant. It does feel the weaker option but sometimes as a first step it’s a good one even though it’s seen as a third line option. Esp if the adhd is not at the more extreme end of severe.

1. The book is excellent I would also recommend.

So for us I think a couple more weeks to build up the strattera on a low dose then reassess. Oh one HUGE benefit which I didn’t appreciate was that it’s made him a lot more emotionally stable and just more content! The flip side is absolutely the mouthing and that will be why we choose to stop treatment if we do.

We chatted upthread about the guan…(sp) non stimulant but unfortunately miss h it’s no go as he would need to be 25kg and he’s miles off.

Will post in a couple of weeks when we should know where we are at! Would love to think the mouthing would have stopped by then but who knows. If anyone is reading and has experienced this snd has any tips it would be good to know. Mouthing may not be the right word, it’s lip licking, general mouth preoccupation, wanting to put anything in his mouth, sucking fingers, chewing coat collar, chewing and gnawing on his knuckles etc etc

That is such an interesting and useful post @carriebradshawwithlessshoes - I bet it will really help others

Does he have anything to chew - I suddenly remembered ds has a sensory chew thingy and brought it back out. That seemed to help. I think it was from Pinkntinc

Did it get better miss h? I know you said you had the same issue, was it this bad? When did it ease off?

No not really I just keep distracting him at the moment or trying to…

It did seem to get better. I think because it’s a sensory need redirecting to a chewer sensory item helps reduce the sensory need too iyswim. It’s certainly not intense for ds now

Sorry @carriebradshawwithlessshoes that was to you

Hello everyone, we are at the beginning of the ADHD journey so it's great to read up on your experiences, thanks for sharing them.

Hello fluffyslippers (and yes me too!). Sometimes with these threads it’s easy to think the only readers are the posters so it’s really nice to be reminded that that’s not the case. Hope our chats help.

Next appt for us is Friday. DS sauntered downstairs this morning and started to chew the pepper grinder 😔. I’m getting a bit fed up of it tbh.

I posted in a different SN chat but this is what I wrote

My DD (10) has been seen privately by a psychiatrist. He says she has ADHD and the treatment would be medication and to also see a psychotherapist.

Psychiatrist suggested methylphenidate to start off with. My OH is very concerned about the side effects and would rather not.

Has anyone seen any negative side effects from medication?

DD is basically 'ok' but she needs a lot of managing to get through life. She needs someone with her a lot, small tasks likeca bit of homework take a long time, people (not us) lose patience with her, we have to have music on all the time, we need fidget toys around all the time, everything needs to be 'just so', she needs her clothes picking out for her etc etc. I know this all sounds minor but I have other children, and it's not really nice for her getting upset and frustrated. But she does well in school, she has friends, and we can help her. If she's not doing anything that challenges her she's a happy little girl.

I don't know what to do. I think they'd help but I worry about the side effects too

I was kindly directed here. I don't really know of anyone to talk to in real life. Thanks

@Fluffyslippersohyes lovely to hear from you. I’m out at the moment but will reply properly later. I would really recommend buying the book mentioned upthread by a top specialist. It is incredibly good and would suggest your oh read it too.

Thank you - already downloaded the book, going to read it during my lunch hour! Thanks, really do appreciate the info on this thread.

A quick update from me: DS had his appointment this week and has been given the ADHD diagnosis. As you predicted @MissHavershamReturns, I have mixed feelings.

On the one hand, we've suspected ADHD for about a year, after I discovered (on here I think) that it can be primarily inattentive, and it is good to have that confirmed so that we can get help and support for him, whether it's learning ways to help him focus and organise himself, or medication, or just good old-fashioned empathy (rather than exasperation) from his teachers. I sometimes feel so sad to think that he has been "told off" at school for years for getting distracted, failing to start tasks etc, and it wasn't his fault

On the other hand, it's a big thing to accept your child is officially "neurodiverse" and to know that there is no cure for ADHD, so he will always struggle. Although I secretly hope that some form of gene therapy will become available in the future!

For full disclosure, I was recently given the diagnosis of ADHD myself, and will be starting meds soon, so I will report that here too if that would be helpful?

We think we will probably want to try meds for DS but will await the full report from the psychiatrist and ensure we've read up on as much as possible.

Thank you to you all for posting. I think this thread is really informative and supportive.

@AlwaysFireFighting I can so completely identify with what you’ve written. It is really hard even if you love your dc completely, accept who they are and are also ND yourself

Take time for yourself and accept the difficult emotions if you can. A wise friend of mine called me at midnight when I texted her to say ds got his dx. She said I thought you might need to talk because she gets it - her dd was dx at age 9 and she just explained that feeling of relief, upset, grief, confusion and regret. I realised I had secretly been hoping just a tiny bit that the paed would say no he’s completely fine. When really I would also have been horrified if that had happened.

I’m pretty sure I have ADHD too and am also considering dx and meds, so would be really really interested to hear your experiences. They would be really helpful to me and I’m sure to others who are thinking of getting an adult dx. You will also have a direct line into what the children may be experiencing which will be so useful for us all.

Thanks @MissHavershamReturns, very wise words.

I'm starting to think there must be so, so many undiagnosed ADHD people out there. But I think awareness is slowly increasing. 2 years ago, I wouldn't have considered in a million years that it was in my family!

@Fluffyslippersohyes I have had a bit of time to read your post properly now. If I’m completely honest I was really in two minds on the meds. My husband and school were really in favour which made me feel I didn’t have complete carte Blanche to say no.

I now feel completely differently. Ds really has no real side effects currently and the benefits for him have been huge. He can do his homework without any help from us for the first time EVER. I asked him this weekend how he felt on the meds and he said “I feel happy mum”.

The things you are describing sound really familiar to my child and don’t sound minor at all. It is so tiring for them having to work so hard just to do basic activities. For years my ds did brilliantly but sadly we discovered that all it took was one impatient teacher to really impact his mental health. I think the steps you are taking are really wise and would be great if you felt able to join us and post about them when you can

@AlwaysFireFighting I completely agree and there must be so many of us.

I only found out I may have adhd because I was wondering what was going on for ds. I was being told asd but it didn’t seem to match what I heard about asd. I then did some online health quizzes with ds - the ones you can take to see if you should seek a formal dx for something. To my huge surprise I came up as 90% for ADHD and that made me look again at ds. He isn’t jumping off furniture or anything like that and my understanding of ADHD was so limited I would never have thought he could have it.

@carriebradshawwithlessshoes I have just read your post about the pepper grinder! That’s fairly intense! He does sound really mouth focused. Pre meds my ds chewed the wooden trim on his bed - if you look from on the bed you can see the little gnaw marks like a beaver has been! It did stop a bit after I got him the chew sensory thingy though.

@AlwaysFireFighting how are things now? Are you starting the medication?

@carriebradshawwithlessshoes how is the strattera going now?

@Fluffyslippersohyes how are your thoughts developing about meds now. Have you made any decisions?

Another quick update from me. Ds is now able to complete his little school homework tasks without supervision which is something I would never have expected before meds. Even his handwriting has improved slightly and he’s making fewer basic errors when no he writes. We have another review coming up in two weeks from now - will be interesting to see if the dr wants to try a further increase in the dose.

Ds is still sometimes disregulating at school, but hard to tell if these upsets are asd or adhd related as he has both. I think I will ask to try going up just 5 mg to see if that helps him further.

Hi @MissHavershamReturns. I did try medication last week, an extended release methylphenidate, but it made me feel incredibly nauseous for the whole day (vomited a few times during the afternoon) and half the next day. It was awful! Luckily it was a day off but I cannot sacrifice that amount of time regularly to get used to it.

My nurse has now prescribed short acting tablets so that the side effects wear off more quickly, whilst my body gets used to them.

That sounds like a rocky start @AlwaysFireFighting and I hope the immediate release tablets are better for you. My ds did have some nausea at first which did settle so I hope yours does too

So sorry @AlwaysFireFighting I have no idea why that weird face is there. I was just trying to send you some

I hope you will see some concentration and calm gains in return for these initial side effects and that the side effects wear off