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 thinking about us.

I will post more tomorrow. We've got an alright day: a suspected case of emotional turbulence for a while before lunch time - 2hrs after a quick release Medkinet (we opted to try this during holiday time). Have to see if it re- occurs tomorrow. But stabilised in the afternoon and even remembered to volunteer to clean the dinning table for dinner after we got back. No headache today and no tummy ache (I carried calpol with me all day just in case!)

@MissHavershamreturns , it's worth checking DS's heart rate and blood pressure when he's feeling unwell. We found when DS increased dosage followed by severe headache, his heart rate and blood pressure were through the roof. But usually it stabilised after a couple of hours - definitely offer some calpol.

my DS is doing some off movements (stimming perhaps) when he’s having milk

DS doesn’t have ASD but when we stopped the milk funny enough the movement went too

we re on day 14 of med break and some days he’s been bloody amazing!!!!! But… I do give certain supplements and also making my own yogurt with A2 milk and good quality probiotics so I’m sure it might help even a bit…

how is DS weight/appetite?

@LoveMyADHD Sounds amazing! 14 days and he's nailed it! How long do you plan for the break? Do you think you want to reduce the dosage further once going back on it?

@MissHavershamreturns , how is your DS doing today? Has the side effects subsided a bit? Bless him!

From our part, even DH had to agree with me today Medkinet doesn't agree with DS emotionally and he became fearful and withdrawn. I will just give it the last try tomorrow. But from then onwards, we wouldn't use this again.

@MissHavershamReturns
Easter Med break update here
Interesting as no massive behaviour change but we are away on holiday so DD not having to concentrate on anything much or keep up with peers. She was exhausted after two terms of Yr8 and masking.
Behaves younger than she is & enjoying playing like a younger kid.
Eaten twice as much as normal.
Emotional outbursts only when v tired.

@NurseP and @HauntedPencil really sorry your dc also experienced being so pale and feeling unwell but good to know it’s sort of normal!

@rhubarb84 we definitely didn’t see much of a dramatic change on the lower doses so I think you are right that you will know when the right dose is there!

So we are on day 4 of reintroducing the meds here and so far ds is ok - definitely had physical symptoms of headache, fatigue, pale and feeling unwell. Also had some anxiety and feeling down yesterday with no obvious trigger other than going back on the meds. But while I can see it and feel sorry for ds both mental and physical symptoms have been relatively manageable for him so far. I haven’t reintroduced the top up yet but will do that today.

Overall, I think while a one week break at Easter has worked I don’t think for ds given headaches etc it’s realistic to do med breaks over a one week half term. If he had restarted the meds on his first day back at school he would have had to have two days off sick.

Having spoken to dp depending on how it goes with weight gain we are currently thinking we would ideally like to stick to not topping up at weekends, 3 days completely off during half terms, one complete week off at both Xmas and Easter and a longer break in the summer (at least two weeks in early summer and maybe 5 days later in the summer). That would give him at lease 6 weeks off a year.

@MissHavershamreturns that sounds a good plan. We have not had any symptoms since we were titrating up the dose. The thought of a med break is horrifying here to be honest as my son is just so destructive with no meds. 😔

@Return2thebasic I hope your ds is feeling better today. Medikinet definitely can cause emotional turbulence, so for us the first week we started you will see if you look back on this thread our ds was very unsettled and actually unlike himself. For us that side effect took a few days to settle and then from week 2 with the 8 hour XL in the morning and a top up of immediate release at lunchtime he was much better. In fact he was better emotionally than he had been before meds and once we had the right dose he went from frequent meltdowns during the school day to far far fewer. We didn’t do breaks for those months. I don’t know if any of this will be relevant to you as I know every dc is different in what they experience. That’s really interesting about heart rate etc and thanks for the tip.

@LoveMyADHD sounds as though all is going brilliantly your end! Really glad to hear your med break is going so well. Interesting to hear you are also seeing unusual movements! Our ds is dual dx with ASD and goes through phases with stims. He might go for weeks with nothing but then sometimes he does have some that will go on for a few weeks. Interestingly the knocking stim has almost completely stopped now he’s back on the meds. We haven’t weighed for a few days but I will try to get him on the scales today or tomorrow! As he’s been feeling unwell his appetite has seemed slightly better but not to dramatically increase over the week of the med break which I am a bit disappointed about. I was hoping for 7 days of eating like a horse 😄

@Marchsnowstorms that sounds like a pretty good result from the med break! Amazing that you’ve had a good appetite increase and not too much emotional upset and hopefully no feeling unwell. Amazing news!

@NurseP thank you! I hear you on med breaks and that sounds super hard. Maybe you could do a really short one over the summer holiday if you have a few days off and see how you get on. If he’s doing fine with meds and ok with meds maybe dr will be happy for him to have a minimum of breaks.

I think it's helping that she doesn't have to 'behave' on holiday. Defo eating way more

Went to a sen bouncy castle session today. Lots of the mums commented how much calmer and less destructive my boy was. So that's a positive. Although he does look much thinner but not classed as underweight so hope we can keep going on this dose.

We've just started DS on Medikinet XL, he's been on 5mg for the past week and is due to up the dose to 10mg tomorrow. The only observable side effect so far, positive or negative, has been more irritate and emotional. Has anybody else experienced this and did it get better?

@Plro , hi, it might take a little time to settle. If he only started a week ago, it's possible he just needs some time to adapt. But each person is different and you do need to keep a close eye.

We didn't see irritability, but when increased to 20mg, he had meltdown nearly everyday for a whole week. By the 7th day, he was showing sign of high anxiety and depression.

We then switched brand and he's now on 30mg for over a week. He did appear to be overly subdued in the first week (suspected a too high dosage). But seems to be completely normal now.

Again, each person is different. You do need to give it time to be sure of any shor term side effects or long lasting ones.

Good luck!

I have been waiting all day to find time to post o this thread, to say a HUGE thank you to all who have contributed.

My DS started medication on Sunday. Today was his 4th day and last night was really hard. I was up a lot with him in the night but reading this thread really really helped. Thank you all.

My DS is 8 and has basically had a terrible time at school. Covid for yrR and yr1. Job shares in yr2 and a real lack of understanding have basically meant only this year did his teacher come out and suggest the problems might be more than just 'silliness'. We knew along and it pushed us to get a diagnosis. We went privately as we knew we would try medication and honestly we felt we owed it to him. 3 more years for an NHS diagnosis meant 3 years of struggling. So we got a credit card and will forgo the holidays this year.

And wow, so far I am so glad we did. Our little boy is already seeing the benefits. He's had 3 good days at school and he said 'is it just supposed to be this easy? Is my ADHD why I could never get as much done?' to which we told him, yep basically, you have been working so much harder than everyone else. He is so unbelievably relieved.

So anyway, medication. He's on Equaysm XL 10mg and that's been absolutely fine. After school he's a little livelier than usual but he's always been ok at home so we can cope. We can definitely tell it wears off a out 2pm, he says he can feel it from about 1 so it lasts from 7-2 which isn't bad.

Yesterday we added in a 5mg Medikinet top up at 3pm as he had a club to go to and the Dr suggested it would be good. It was awful. He became almost anxiously aggressive? Not in his actions but his mannerism. It was how he used to be when tired & deeply unregulated and was very rare.

I wasn't sure if we should do the top up again. But reading this thread made me see that these side effects can sometimes just take a few days to settle, so we topped up again today and he was pretty much fine - definitely more focused (he read 3 chapters of a book through choice!!!!) but he's definitely been a bit more emotional and sensitive to change.

I'm catching up with school next week so I let the Dr know how they have found him, but from what I can tell it's already helping!

For reference DS also has dyspraxia and possible ASD (NHS pathway for that one) but the ASD is tricky to spot and subtle - he presents more how girls with ASD tend to present.

We are also at the same time doing work with a therapist on his retained reflexes and wow that's helped HUGELY. If you have Amazon Prime go now and watch the documentary Attention Please, it's amazing!!!

@WWesternEasterner . Hi! Welcome to this amazing thread! My son is nearly 8 with severe learning disabilities. He has asd and adhd too. He takes eqysium 30mg and tops up with 5mg immediate release at about 1pm. It has been life changing for us. He is so much calmer, less destructive, his speech and learning has come on so much since being able to focus and keep himself calm.
Over the last couple of weeks I have noticed how much weight he has lost so keep an eye on this. He always eats a good amount for breakfast but lunch is very hit and miss and just lately his evening meal is getting less so we need to keep an.eye on it.
It's just so good to be able to speak with others in the same situation.

That's absolutely amazing, @NurseP I am begining now to see the power this medication can have and last night I had a little cry knowing we are finally on the right path.

We did another top up yesterday and he did really well. None of the symptoms he had before, so we repeated again today.

He is definitely more able to focus and a bit less silly. I expect we will go up from 10 to 20 at the end of the month but I wonder if that might be enough for him for the moment. I listened to a brilliant podcast at the weekend that said the medication should ideally have a significant impact, not just a 'bit' and we definitely aren't there yet. The podcast also said they go up and up (slowly and carefully) basically until there are side effects and they they go back down, so finding the maximum level possible. Given that we have had no side effects at all yet I suspect we are a way off that?

The weight loss seems to have come quite suddenly, unless I didn't see it. We took about 6 months to get up to 30mg.

That's great to hear Western. We are on 30mg and think that's ok for now. He's jumpy and buzzy in the morning but in the "mildly annoying" stakes rather than it being an issue - it gives him concentration at school and his work as improved hugely.

Issue we are having is large and worrying meltdowns occasionally rather than regularly.

Said I'd update about his appt

My consultant isn't a fan of med breaks unless there's a reason (namely the weight etc)

Or really supplements - I guess that's a matter of opinion.

DS has been doing ok since he had a bad one in March - happy and getting on ok at school. He's lost weight again but grown taller. She was happy for now but if he continues on this trajectory I guess this could be an issue. He is was actually overweight to start with and he's now an average size.

When my DS went to the one a day 20 he was pale and withdrawn for a week and had emotional crying meltdowns most evenings - took a few weeks to settle

When we moved him up doses again it took a while he was withdrawn and quiet and when asked are you ok would say "fine" but look really sad and almost depressed - it was quite difficult. Persevered as knew from before he would come out the other side but he's back to happy self now 100%. He asks for his meds in the morning he prefers his day with them.

Forgot to say I got a prescription for melatonin for the summer months and his problems sleeping.

@WesternEasterner lovely to hear your story, yes it is great being able to hear about other people's experiences. We went private too. And a similar story of covid & inexperienced teachers probably delaying school flagging issues to us.

After 3 weeks on 10mg Medikinet DS is going up to 20mg tomorrow. We haven't seen much impact at all on the 10mg although school said there's possibly a slight improvement in concentration. Hoping we do eventually get to a dose that makes a difference!

@rhubarb84 we are just over 2 weeks behind you now so will be following closely! I think there has definitely been an improvement in behaviour at school - he was quite disruptive I think - hiding under tables when things were hard, calling out a lot etc and I think from what he's said so far he's been doing that less. I am looking forward to speaking his teacher next week.

Please let me know how the change to 20mg goes, I hope it goes well. Are you doing any afternoon top ups? Our Equaysm lasts 8 hours. He takes it at 7 as leaving the house was/is a huuuuge stressor for us all. It's wearing off by 2 so have been topping up around then as suggested by the paediatrician we saw. I'm not really sure if he needs it.

@HauntedPencil the podcast I listened was with a leading ADHD Dr from the states who also wasn't a fan of med breaks. He said that for teenagers especially they need to be regulated as much as possible to enable them to make good, non impulsive decisions with their peers. My son struggles a bit with peer relationships so I think it'll help him to be medicated at the weekends and for clubs etc. The podcast also said that breaks could make it harder to get fully used to meds and that research shows as adults, those who were medicated had improved brain function (probably not putting it well!!!) Compared to those not medicated. So basically medicating seems to enable ADHD children to develop those key areas of the brain. Another argument for fewer breaks.

Ultimately I think we will encourage our DS to see the advantages of medication but he's also old enough to have a say in it and make some decisions himself I guess.

Your experience makes me think if we should have given Medkinet a bit longer time. But it was really hard to watch, especially when ds showed sign of withdrawal/depression.

The podcast also said that breaks could make it harder to get fully used to meds and that research shows as adults, those who were medicated had improved brain function (probably not putting it well!!!) Compared to those not medicated. So basically medicating seems to enable ADHD children to develop those key areas of the brain. Another argument for fewer breaks.

There are research papers showing the same conclusion. I read the abstract and it does sound promising.

DH also believes the medication gives Ds the chance of training the brain to develop as it should be. The way our medi break panned out (the medicine effect only completely wore off after near a week) made DH firmly believe no more break should be taken from now onwards. To his belief, the training process shouldn't be disrupted. But, well, that's with the premise that he is eating modestly alright (breakfast and dinner) and sleeping alright at the moment on 30mg (touch wood..).

We would all love not to have meds break

@WesternEasterner the problem is brain is getting used to the dose and hence it needs higher and higher dose over the time

this is well documented (one of the reasons it has a street value)

we ve done great with breaks but we ve done significant diet/supplement adjustments (think making own yogurt with a special probiotic proven to help Adhd etx )

hope everyone is doing great!!!

@LoveMyADHD that's interesting, I hadn't heard that before but I'm very new to all of this so that's probably why. And yes it's obviously all dependent on sleep and weight too. We're only on day 6 so I have lots to learn!!

I was wondering when he had two quite bad episodes in a few weeks if the meds were wearing off but he's had a really good run again lately TOUCH WOOD