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

@MissHavershamReturns Thanks for the flowers. That's interesting that your DS had nausea too. When I was lying down feeling awful, I was starting to think "no way can I put DS through this, especially when he himself doesn't really recognise an issue".

But reading your recent updates, I am feeling more positive again. Your DS being self-motivated to do homework sounds like a dream come true (have spent past 2 evenings helping DS organise his thoughts for a homework project which he would just never manage on his own). Are you finding family life runs a bit more smoothly now?

I wonder if your DS will get the dose increase?

@Fluffyslippersohyes

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 Your description of your DD really resonates - the constant micromanaging you have to do. It's exhausting, but you don't want to see your child fail or get told off at school. My DS also has younger siblings and I feel that the ADHD management takes up a lot of time

@AlwaysFireFighting yes it does run a bit more smoothly. Ds says he feels happier and home work gets done. He is much more alert and on it generally. It’s not an easy decision but the book says a fair number of children have no side effects and we are very lucky that ds falls into that group.

That's so great that he feels happier, as well as having better focus and task initiation. I think you also said upthread that he is still "himself". That must be a relief also.

Yes he really is still just his own lovely person @AlwaysFireFighting and I was worried about that, so it’s a relief

How is everyone?

@carriebradshawwithlessshoes you must be quite far along with the startera now?

How are you feeling with the immediate release @AlwaysFireFighting? And also how are you feeling now you’ve got the diagnosis and have had just a short while to digest it. I know it’s a really tricky time, or at least it was when it happened to us.

@Fluffyslippersohyes how are things with you? Did you get anywhere with the book?

We are still muddling along. Huge focus gains still visible certainly at home, but still also quite hyper at home and school, so feeling he needs to go up but also scared to!

I’m worried about side effects especially with sleep, so would ask if we can just go up 5 mg I think. We don’t have a date yet for our next medication review either so will have to chase for that.

Overall it’s been a tricky week for us - more with the ASD side of what is going on with DS, which is just a reminder that however we’ll the medication works it’s not a cure. I know some bumps in the road are inevitable so just trying to remember that.

Does anyone know if you can take travel sickness meds with the stimulant ADHD medication? I will ask consultant and see but wondered if anyone had asked this before? There is a long journey coming up and I realised I forgot to ask, so will need to get clarification on this.

Hi @MissHavershamReturns, glad to hear those focus gains are still there. In what way has the week been tricky (only say if you want to, obviously).

I've been meaning to update but you know.... ADHD! I am now on my 3rd day of taking Medikinet 5mg twice daily (breakfast and lunch) and it has gone much better. Only a very mild and intermittent headache on day 1, and no nausea at all. I still wonder if I actually had a vomiting bug the day I tried the extended release?

I can tell I have "taken something" but it's very subtle and I do not feel more focused at all. In fact, I feel more "foggy" but I think that may be lack of caffeine (they advise you to wean yourself off before starting meds). I am obviously on quite a low dose now so hope to gain focus as the dose increases. The dose will be doubled on Thursday.

In terms of my son, we feel okay about the diagnosis. I am starting to try to make his life easier, e.g. have just got him a big bedside analogue alarm clock, with a really clear face, to help him organise himself better in the morning. Am also looking at magnetic noticeboards to go above the desk in his room.

We haven't yet had the full report from his doctor but have booked an appt to discuss meds anyway. This is because appts get booked up so far in advance, and if we do decide to try meds for him, we'd like him to be settled on them before his SATs in May if possible. We can always cancel the appt 7 days in advance if we decide not to try meds yet.

The decision will partly be made based on how well I respond to meds, assuming we share some genetic similarities.

I’m so pleased the sickness is going @AlwaysFireFighting. You definitely could have had a sickness bug and there is one going round up here actually.

It must be frustrating that you don’t feel more focused yet, but hopefully that will come. I don’t know whether you saw the bit in the medication book where if I remember rightly it said 90% of people will respond to at least one of the ADHD medications.

The genetics sound interesting - I have googled some stuff on this and they seemed to suggest they don’t yet reliably know how genes impact on medication effectiveness. Just as an example, ds likely metabolises the extended release methylphenidate faster than average, but if I haven’t got that trait because he got it from his dad then the extended release might work fine for me, if I ever get diagnosed that is!

Sorry for going quiet, we have all been ill!

Still on the 10 mg atomoxetine which we have not yet formally increased to the intended dose of 25mg. Currently it’s doing nothing, I may as well be giving him a smartie. It can take 4 to 6 weeks but we are on week 5 now and I’ve had enough. Rang for an emergency appt yesterday which is later today and I couldn’t hear the woman on the phone because of his screaming! Says it all really…

Yet when I played around slightly upping the dose he was worse!! If he stayed on this med the dose would go up but when I lifted it slightly he went absolutely mental!!! Totally out of control hyper. So I’m really worried where does that mean we go from here????? If we stick with atomoxetine?

Im really minded to ask to revert to 5mg medikinet XL. Ok so he mouthed and school said he was aloof but frankly that’s heaven compared to this. We had a weeks holiday when he was on that and he was brilliant. I would hope that over time any aloofness etc may settle not that we saw much.

So that’s where we are!!

@carriebradshawwithlessshoes I really feel for you. It’s so difficult isn’t it

I wonder whether going back to stimulates but asking to try one from the other branch of the stimulant family - the amphetemines might help? I have absolutely no medical expertise so no idea but maybe worth asking.

I do think one of the problems in this whole process is the input from school is going to be so variable in its usefulness. Some sencos and class teachers will be really observant and well informed and observant, but others will not and their views are given equal weight without the prescriber having the chance to meet them and get an impression of the likely value of what they are saying. I know two people who had their forms filled in for assessment (two different schools) and in both cases comments were made about their child which had never been made to them before and which were very different from what they saw as parents. In one case the parents challenged and managed to get most of the comments on the forms changed as the school eventually agreed they weren’t really accurate.

Would one way round all this be to ask to try stimulants again in the holidays and then you can keep a close eye and try to do some social stuff to see if this aloofness is present again this time?

We just got another prescription for continuing the same dose for ds, which will carry us through to mid May.

I’m not sure whether the school have filled in the rating scale yet but I’m going to ask for a medicine review and request to discuss moving the dose up to see if that improves things further for ds.

My only real query is whether to do that in the May half term or summer holidays and I don’t have any clarity on whether we will be asked to take a medication break over the summer holiday.

Does anyone reading have any advice on medication breaks?

@Premiumtube @BucketOfPlumbers @Starlightstarbright1 @HowToMakeFriends

Any advice on whether a summer holiday medication break is likely to be advised?

Well had the call and they said it can take up to 13 weeks for atomoxetine to work. They have increased dose. I think miss h if we stop now and do school hols on a stimulant we have lost the 5 weeks currently done if this is on the brink of working which the clinician said it may well be.

Wow 13 weeks @carriebradshawwithlessshoes that’s so interesting and hopeful that it could still help. I hope the increase works and you soon see it kick in and at least you will know for sure in 8 weeks from now. Keeping everything crossed for you.

Help help help help …anyone.

So if I was to rate DS’s adhd before any meds I would say a 6 out of 10.

He’s now been on the slow burn atomoxetine 6 weeks. The drs say it makes a while to get into his system and any increase can initially make things worse etc. 10 is v low, the starting dose.

We have had 5 weeks of no benefits. He’s remained a 6 out of 10. But manageable.

We have increased or amended the meds.

For the last 5 days presumably because it’s not in his system/ built up??? He’s a full blown 10 out of 10 adhd. Absolutely manic. All night in particular. Unlike normal melatonin won’t touch him.

I just don’t understand. Does anyone? I do know that we can’t cope with this beyond a day or 2 and we have past that now. It was so bad the other night at 2am I walked out of the house in tears… absolute mania.

Sorry we have NOT amended or increased the meds.

My qu… would you stop and give up as a bad job??

It’s NOW in his system not not. Just so tired….

@carriebradshawwithlessshoes I’m starting just by sending you a big un mn hug. That sounds incredibly hard. You have been amazingly patient for weeks and must now be so exhausted with it all Will now read and give you my very non expert thoughts

Ah @carriebradshawwithlessshoes I’m sure you feel you need an urgent meds review. Can you call the consultant secretary and get an appointment? I believe you can’t just stop some of the non stimulants can you? I think I read in that meds book some have to be tapered off for safety, but not sure if that applies to yours.

I would be asking the consultant some of these questions I think.

In your experience how frequently does this reaction happen but then get followed by a positive impact on ADHD symptoms?

If this was followed by a positive response to the medication with less ADHD symptoms, how long would we need to wait to see that?

Sending you a huge hug and wish I could have coffee with you to talk it all through. Is there anyone supporting you in RL who gets it?

Thanks. No no one gets it in RL. On face value people like my elderly parents say ‘but it’s making him worse, I don’t know why you are doing this.’ Then when I explain to others who grasp what I’ve said a bit more they say ‘well you will have to stick it out then won’t you.’ But they aren’t the ones up at 4am with a child who has been screaming hysterically with laughter and who is running manically around the house for the last 8 hours.

I feel the clinicians put the decision back ultimately on us and what we say we can cope with. They will say ‘very often’ things resolve but there are ‘no guarantees.’ They will say that we need to ‘try and push through’ but then in the next breath say we are living with this, he’s our child, we know him best, we have to trust our instinct. I asked the clinician what we should be expected to tolerate and he laughed and said his background was working with very seriously affected and challenging children so whatever I thought was bad would not probably even register on his radar as bad! Which is fine if he was looking after DS for a few weeks but he isn’t, it’s us… 2 parents, both working, with another child who has been so upset today by her brothers behaviour she has shut herself in her room with a book for most of the day.

Taking a step back perhaps we should just not have moved on from medikinet. It was ok, he was quieter. Calmer. School were moaning but they moan anyway. He was mouthing everything in sight but he is now anyway so we should have let him mouth everything and be calm rather than switching to a med where he’s mouthing and manic. If we had persisted on medikinet maybe by now the mouthing would have stopped??? Even if it hadnt we wouldn’t have been in a worse place than where we are now.

DS just seems a really complex child. On the face of it you wouldn’t think he would be but yet he seems so intolerant and sensitive to everything we try in terms of interventions, it’s like his threshold to tolerate anything is incredibly low. I can’t explain it.

Discussed with DH and agreed we can’t go on like this. I did ask if you can just stop atomoxetine and you can, apparently (according to the clinician.)

@carriebradshawwithlessshoes I really feel for you. You and Dh have been doing everything you can to help ds with very little support from anyone else

I totally get what you mean about no tolerance. My ds has no tolerance for small changes either and somewhere in that meds book it says that where there’s a dual dx of asd and adhd dc can have more side effects and it says to “go slow and go low” for dc with a dual dx.

I’m really glad you can just stop if you did want to do that. At least that gives you more options.

Would you consider putting a time limit on it now? So trying just a certain number of more days or 1 more week? Then see where you are?

My ds is definitely mouthing things more with the medikinet. But it doesn’t seem to be causing him undue upset or social issues and we still are getting some success redirecting onto a pencil top chewer thing. So maybe when you get to the end of however long you decide to give this medication, if no improvement you could try medikinet again.

I’m sorry not to have any answers, but sending you so much sympathy and hope that it all works out soon.

Hi @MissHavershamReturns - how is your DS getting on?

Sorry - sent that before I got to the last page - please ignore