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’ve also just checked this in the amazing meds book by Prof Peter Hill ‘The Parents’ Guide to ADHD Medicines”. On page 220 he says the Canadian ADHD Resource Alliance say that ECG monitoring is not recommended “In young patients with no history of heart disease or normal physical examination”.

Thank you SO much

She just took her first one at 10am! I now need tranquillisers!

Hi, sprry ti hijack this, but I just started her earlier today, the only things she has noticed are she feels even more fidgety and her hands are slightly tremble. Has anyone else found this?

Hi @Purplepeople12 that’s not something we had, but our first few days on the meds were definitely rocky, so I would check the leaflet and unless it says to seek medical attention I would see how things are in a few days.

@Purplepeople12 wishing you good luck and I know exactly what you mean about needing tranquillisers - I was a nervous wreck for the first week

@MissHavershamReturns I am so glad you started this thread and a huge thank you for the help the last few days

My daughter is 14, she has been told she doesn't focus and is disruptive her whole school life but they and the Dr kept putting it down to her hearing difficulties. An Ed Psych assessed her in y4 and said she had slow processing disorder and her difficulties were compounded by having pockets of learning missing when her hearing was low. When she got to secondary, I realised that the meltdowns that were occurring weren't getting less, if anything they were more noticeable so due to her age I went privately for an ADHD assessment, they dx her with that and also suggested she have an Autism assessment. This was done in March this year and with that dx too her clinician then began the discussion around meds. The diagnosis of both conditions has meant a lot of learning and research obviously, but also in a way it has been a relief to finally be able to understand how to help her.

I had read that leaflet about 200 times and googled my life away, but some of it is contradictory when it comes to side effects, so some were listed in the see a Dr straightaway, AND under see a Dr if it persists! It helps to be able to read real experiences and know what to expect such as loss of appetite and feeling sick

This thread really has been a godsend and it's nice to feel like I'm not alone on this quite frightening journey

@Purplepeople12 sending you a big unmn hug. I’m away with work this week so can’t write much today but will write properly when I get back. Have you bought the medication book yet? It’s on prime on Amazon and is the most reassuring read

Thanks - yes it is, it's lisdexamfetamine. The Dr described it as having a mild antidepressant in it too and it releases the dopamine too, which I think helps because when she's spiralling she does appear depressed. Thanks so much for the support.

@Purplepeople12 how is it going now? I found the first few days of meds exhausting myself (if I’m honest at that point I still had some doubts about whether we should have gone ahead with the meds) so I hope things have been ok with you.

I’m really sorry to hear it has taken such a long time for your poor dd to get an answer on her focus struggles. Not quite as long for us as my ds was 10 at dx, but my ds has always had similar struggles and I had to raise ADHD multiple times as the professionals and school had all ruled it out before finally everyone agreed with me.

What kind of hearing difficulties does dd have? Is it historic glue ear or ongoing issues?

My ds also has a dual ASD and ADHD diagnosis. It has been a massive emotional roller coaster but also helped us to understand him.

@Fluffyslippersohyes that’s so interesting about the mild AD effect - hopefully that will really help if she does seem to have depression type symptoms in the mix. My ds seems to respond well to Methylphenidate but I do wonder whether he might have responded even better to the amphetimine based meds. It’s interesting how in the US they more often start with those.

@Hels20 how are things your end now? Has the dr been able to help at all?

Hi @MissHavershamReturns - we haven’t spoken to doctor yet. He is going into Year 3 in September and we are going to try to use the summer to try him on different meds. We are also wondering about ASD - as he struggles socially (although no other traits). He is operating about 2 years behind where he should be (maturity wise) and I think that has really hindered his ability to make friends. Children don’t dislike him but don’t seek him out to play with. Having said that, Covid really didn’t help…

@Hels20 hopefully you will get him sorted on a good set of meds by the end of the summer.

It does sound from your thoughts like it could well be worth assessing on the ASD side. The ASD course I went on said that children with ASD tend to operate a third younger than their bio age, so a child with ASD aged 7.5 emotionally would be more like age 5, if that makes sense. We found with ds that the social gaps became much more obvious at around 8 or 9 as other children became more sophisticated and he was slightly left behind.

I know the waiting list for nhs diagnosis in our area is now really long, so if you wanted to get him into diagnosed before secondary in our area you might need to be getting him referred now. It might not be quite as long where you are but here even the private lists are now long (can be a 5 or 6 month wait even privately).

How is everyone doing? Is everyone continuing to take the meds over the summer or trying a medication break?

Pressed post too soon there!

We had an appointment with the paed and so this week the meds have now gone up to 30 mg of medikinet XL in the morning with a 10 mg lunchtime top up.

One interesting thing the paed explained is that the 60 mg maximum in the NICE guidelines is a cumulative daily intake. So although the morning dose for ds is only 30 with the 10 taken into account that’s considered a daily dose of 40. We aren’t close to the maximum yet but I hadn’t realised it worked like that.

No impact on sleep of increasing the dose, but I can see it’s harder to keep food intake high - he’s still eating a good amount but I do have to encourage him more.

He’s seemed a bit less chirpy and lively - sort of suppressed and not 100% himself. I was wondering if that was a medication side effect but then it seemed like he’s been coming down with a bug, so maybe it’s just that. He did seem a bit more himself today. Hopefully by next week things will have settled a bit.

@Hels20 are you trying the meds now? Hope all is going well with it if you’ve started titrating.

@Purplepeople12 how is your daughter now she’s had a few weeks on the medication? I hope it seems to be helping and the fidgety/tremblingly has settled.

@Fluffyslippersohyes how are things with you?

@MissHavershamReturns I am sorry, I've only just seen your reply from the 16th, I don't know how I missed it.

Her hearing issues were down to glue ear but it didn't resolve itself by the age of 8 like they had told me it would, infact she's just had to have them both microsuctioned again. So they said at the time she had missed pockets of learning and social skills that she should have picked up before she even started school.

We had a bit of a scare 4 days in where she deliberately scratched herself so the Dr put her dose down to 5mg to see how she tolerated that, as we weren't sure if it was the tablets, or the end of the school year as she has been really upset as her form tutor is leaving, & they are being put into sets so she isn't with her friends in English anymore, so all change that she just can't cope with very well.

She's been fine on 5mg for 2 weeks now, but obviously its having no affect at all. We have a review on Saturday with the intention of putting it back up to 10mg so we will see how it goes.

I hope the increase in dose goes well for your son, I dread the increases. It really is a roller coaster, but like you say, the dx at least gives an explanation so its not as alarming when they have a meltdown etc but still not easy. Why do we have to fight the schools so much too? Do you mind me asking, is your son on an EHCP? The Dr said my dd should be on one but the school are so against it, they are saying they don't need one to help her, but they aren't doing anything! They also said our LA will reject it as they reject every single one, but I read that on appeal 95% go through so I've asked her to start the process.

Does anyone find they suffer headaches with this medication?

@Purplepeople12 don’t worry at all about not replying. This can just be a relaxed space for us all to share as and when we have free time in our busy lives. I personally have adhd I think and am always missing stuff which means I wouldn’t ever notice or mind if anyone else does!

It sounds like your paed is super cautious which I think is really really good. Hopefully going back up to 10 will give you an idea. My ds has had numerous wobbles on the meds which I think are due to the untreatable aspects - the ASD so hopefully yours won’t be meds related either.

Just going to post this so I don’t lose it and then will write something about headaches

On headaches our paed said these can take a few weeks to resolve and it is a known side effect. She said to highlight if still an issue after week 3. My ds did have this actually almost daily in the first week if I remember (lazy as I could just read back!) but they’ve now settled and not an issue anymore.

Have you ever kept a headache diary for your dd? My headaches tend to cluster from day 20 to about day 28 of my cycle and mine were quite intense in the teen years. Really hope this stops for her soon

Thanks, there's a strong family history of migraines on both my side and her dad's, but she has never suffered from them until now. She had her first bad one just before she started medication, so bad that I took her to the GP who said it sounded like a migraine headache, it lasted 5 days, but she has had a few lighter headaches lately which started with the medication. Could be coincidence though and her age possibly, I will start a diary and see if fits in with her cycles, that's a good point.

The SH has been a real scare but like your son, these things are more to do with her Autism than the pills I believe. She explained it well to me afterwards and said she just couldn't find the words quick enough and was getting frustrated so she did that to herself instead. It's a very difficult road this isn't it sometimes. With understanding comes some relief though at least.

@Purplepeople12 how did your review go?

We are getting a clearer view of how ds is on 30 mg now and seeing that he still seems his usual self actually! Hopefully the sort of flat spaced out stuff we saw last week was more to do with being run down and tired.

I do find every time we increase the meds I worry and then I think I obsess about potential side effects that aren’t really there.

I think this will be our final stable dose at 30mg plus 10 mg top up (total of 40 mg) as the Paed has told us she doesn’t like to prescribe more for dc with the level of adhd symptoms ds has where they also have asd and anxiety, if I understood her correctly.

If this is the end of the titration process it’s taken around 6 months for us but I know in the meds book it says for dual dx with ASD the prescription should start low and titration go more slowly.

Dc is definitely less anxious since starting the meds and I see a huge reduction in ADHD symptoms by mid morning compared with what I see when he first wakes up. Concentrating is much better at home.

Her review went OK thanks, they have put her back up to 10mg now so we will see how it goes. She has another review on tbe 22nd.

I'm glad you have him now stable on meds, are you able to go direct to your gp now?

Oh that’s really good news @Purplepeople12 I’m pleased she’s back on 10 - fingers crossed it goes well. We’ve chosen to do most of our titrations in school holidays as we find ds is so anxious at school that holidays are a more neutral time to do it in terms of working out what’s going on. It hasn’t always been possible but has worked better where it has.

In theory we should be going to GP but we are still awaiting a referral to the hospital ADHD clinic we put in to the NHS in February time. We got a private dx and have been seeing the Paed privately since then. Would love not to be paying for the meds as a private prescription and also for every review appointment privately!