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]

Anyone?

[Premiumtube]

Hi, my son has been on medikinet xl since he was 7 (he's 9 now). The initial side effects weren't too bad for him. It depends on the dose, we started on 5mg which hardly touched the sides and went up to 20 after less than a year (I think!) Yes their appetite tends to be suppressed but a good breakfast and dinner sorts that out. If he's in breakfast club I'd give it to him with some food just before you leave home. No point doing it before 6am as probably won't last into the school day much.

If a low dose isn't working then you can get an increase after a couple of weeks to get the balance. I assume as he's 10 he may need similar to my son but of course depends on their build and metabolism etc.

Good luck. Made a huge positive difference for my son.

[MissHavershamreturns]

I’ve just checked and it’s medikinet xl starting on 10 mg. Dc is pretty slim so maybe that’s enough.

[MissHavershamreturns]

@Premiumtube that’s so helpful thank you - I think you are right that 6.45 is too early. We are out of the door 7.40 so may move breakfast to just before then but keeping uniform etc clean will be a challenge

[MissHavershamreturns]

I’m assuming if we give it at 7.40 it will peak at 11.40 and be out of his system at 3.40

[MissHavershamreturns]

Just worried this is still too early to take it - wish I had asked the paediatrician but this only occurred to me after we left!

[Premiumtube]

It'll depend on your son but yes it will likely have worn off by the end of the school day. It will be a bit of trial and error until you get it right. Don't worry about it, you can't get it wrong, it's more of just finding the right timings/balance for your son.

[BucketOfPlumbers]

Massive breakfast, then meds. It takes about half hour to kick in. The come down can be horrendous while they get used to it. They can be quite manic and make you question if they work as you never see the benefit, but school will -sometimes i was jealous of thistle!!-- The appetite may not hit until around 4 but then they will be ravenous. Carbs are good!
We started dc on 10mg, now at 30mg. Dc can tell the difference and is quite self aware now of the effect they have. We went through a tricky period where they thought they didn't need it, but they have since realised they do! In fact, the other day came down stairs when studying on the weekend and said "right,I have been sat there for 15 minutes and written ten words, I need meds! " (They usually don't take the meds on a weekend, for weight maintenance reasons, unless we are in the gcse study period.) They now say they couldnt get through gcse without it and we're quite worried they would be stopped at one point as they hadnt been eating enough due to study stress and their weight dropped. Dc started at around the same age and is gcse now, so it's been a journey!
Also be aware of a good wind down routine, even if they are just laying reading as they have trouble getting to sleep. Dc yesterday took it at around 2, which is quite late, and was up all hours this morning. (Fine as a teen now and slept in, has a party tonight so won't take one!)
As they get older, compartmentalise-ation (?? Is that a word?) Is invaluable. Desk only for schol work, not gaming. They know it wears off around 4 so extra study is at school after school so they stay in the "school" mindset. Otherwise the multiple transitions from school to home to school work are too many to cope with one the meds have worn off.

[Starlightstarbright1]

My Ds is on Equasym xl but takes meikinet in the evening if attending actitities and normal meds have worn off.

When my DS first started meds there was a clear cut off when meds wore off he was starving.. and very bouncy.

He has been on them years and the come down is less noticable.


There shouldn't be a peak as such as they are slow release.

[HowToMakeFriends]

My Ds started on Medikinet, did the 4 hour pill with breakfast, then took another with lunch at school. I found it made him a bit too up and down, I assume as it wore off/got back into his system a bit.

We changed to Equasym about a year ago, it's slow release and lasts about 8 hours, so is wearing off by the end of the school day, but to be honest, because it's slow release, I don't see the changes like I did with the Medikinet.

If you're finding it's not working for you, speak to the paediatrician, they're usually happy to try different combinations/doses etc.

[MissHavershamreturns]

Thanks so much @Premiumtube, @HowToMakeFriends, @Starlightstarbright1 and @BucketOfPlumbers.

Life has been really tricky so haven’t written back but we start Medikinet tomorrow!! I’m nervous but also hopeful.

I asked DS today if he was willing to give meds a go and he said he’s keen. He’s hoping it will make him find concentrating and waiting easier.

I’m scared about side effects. I will post daily on here as we start. Please please do keep giving us your expert advice - think we will need it

Eeeeek

[MissHavershamreturns]

@Indoctro I know you are considering starting soon, so tagging you in case my posts are useful. Please keep your fingers crossed for us. Feels huge

[MissHavershamreturns]

Day 1

So today we started Medikinet XL which is the slow release 8 hour version. We started on 10 mg and ds is 10.

It has been both better and worse than I expected so far.

We tried to mimic what will be the routine on school days - breakfast at about 6.50 am, leaving house for breakfast club at 7.40, so an additional snack once in uniform at about 7.35 and then taking it at 7.40.

We had no issues at all for the first four hours. Ds said he felt it was helping him to concentrate better on the stuff he was doing. He was slightly calmer but still very much himself. Less movement, less noisy. He had plenty of appetite at lunchtime - maybe slightly less than normal but still fine.

But from about 4 hours in which I guess is when it came to peak strength we had issues:

Irritable - much more stroppy than normal

Tired - wanted to lie down all the time which is very unlike him. I think he would have slept if I had left him to his own devices

Headache - hard to know if connected to Medikinet as we went somewhere in the car and this can trigger migraines for him

Such a rollercoaster today

[MissHavershamreturns]

He seemed to get really irritable from 6 hours after he took it - if this didn’t settle we wouldn’t be able to continue with the meds as he can’t be like that at school obviously.

Hoping the sleepiness is a temporary side effect which will settle

[MissHavershamreturns]

Just asked him how he feels now - it’s 8 hours later so the meds will largely be out of his system I’m assuming. He says he feels great and he doesn’t look sleepy any more.

[MummyMilla]

@MissHavershamReturns my son is 8 and has been taking medikinet for 3 years now. Started on 5mg and now on 10mg.

As hard as it may be, try not to over analyze the first few days and weeks. It takes a while for their system to get used to the meds and there will be some ups and downs. I was diagnosed with ADHD myself 18 months ago and having also tried meds I really get it.

As others have said, keep the dialogue open as your son needs to be engaged. My ds is nearly 9 and really understands his meds and how they make him feel - we only used to do school days but he actually prefers them all the time as it stops the withdrawal symptoms.

Re the tiredness, my son also had that. We were told it's due to them focusing for much longer periods than they're used to. Which is exhausting!! It does get better as time goes on but brace yourself for the come down/exhaustion/hunger come 4pm! Plenty of snacks and lower expectations. I pick my son up from school at 4, he does his homework and then I just let him veg in front of a screen until supper at 6pm. And again, he's super hungry by then. He also has a banana and milk when reading and pre teeth.

We've kept his dose as low as poss and this hasn't affected weight etc. You just need to find what works best for your son. Good luck

[MissHavershamreturns]

Thanks @MummyMilla that has really helped to say better not to obsess in the early days. I was so worried today as he’s very anxious anyway and I didn’t want him to have a dreadful time on the meds.

Such helpful advice on after school and everything else - thank you!!

[MissHavershamreturns]

Day 1 bedtime

One of my biggest fears has been that the meds would interfere with ds’s sleep. After a frightening experience two or three years ago he started waking up five to seven times a night, finding it really difficult to get to sleep each time and to sleep when first in bed. I sorted this with calm perseverance, but in that time spent hours sitting by his bed for months. It was awful both for him and me.

I’ve had to sit with him tonight but he’s finally asleep - a bit later than usual as bedtime starts 7.30 with reading etc and he’s usually asleep by 8 ish. He’s always been a real early riser and is awake by 5 or 6 am whatever time he wakes up!

[carriebradshawwithlessshoes]

Ah ok I’m in the right place now!!!

The paed said everyone’s bodies need to adjust so I think it is a case of keeping going unless anything terrible means you can’t. DS can be very up and down emotionally, this morning he was a bit upset but generally def calmer.

Do you have half term next week?? It’s a good time to try. Hopefully he will sleep through this eve, since we switched to 5mg DS sleep has been fine. I do wonder what planet they were on starting at 10 mg for us…he’s a small 6 and weighs 20 kg which I assume is a lot less than your 10 year old??

That’s interesting about the tiredness… I can see that DS is more focused. Keep us posted, it’s so helpful that a few of us are trying the same thing!

[MissHavershamreturns]

@carriebradshawwithlessshoes we do have half term thank goodness.

I just checked what the paed said about weight and ds was 34 kg on the day that weighed him, so not that far off double your ds’s weight so makes absolute sense that 5 mg would be better for your ds.

My ds is actually only between the 25th and 50th centiles for weight - he’s very tall but has always been pretty skinny. I did notice that the meds leaflet seems to list 10 as the usual starting dose for all children and then says it’s for 6+. Interesting as there’s a lot of difference between age 6 and age 17 weight wise!

[MissHavershamreturns]

Day 2 - waking time

DS has just woken up at 5.30 am which is normal for him. Last night didn’t seem to have any night waking - he certainly didn’t wake me up anyway.

He has just said he’s woken up feeling really tired, which he doesn’t normally say when we wakes up and that he feels like he slept really long, so maybe his sleep/tiredness has been impacted by the meds.

I will try to keep the meds routine as similar as possible today and see how we go. We are going to the local big town to do a family day at a little museum, so should be a good opportunity to see if there’s any improvement in concentration skills.

[carriebradshawwithlessshoes]

Good luck let us know….!! Have a lovely day.

[MissHavershamreturns]

Thanks @carriebradshawwithlessshoes!

[MissHavershamreturns]

Day 2

We did exactly the same with the meds today as yesterday:

• breakfast at 6.40 am
  
• snack at 7.35 am
  
• tablet at 7 am
  

Ds had some side effects today:

• headache again
  
• more irritable than usual (but not as bad as yesterday)
  
• slightly tired but nothing like yesterday
  

Sadly I’m not convinced there was much impact on his adhd symptoms from the meds today. He was still pretty hyper and it didn’t really seem to have the subtle calming effects of yesterday.

BUT he did say:

• he felt great
  
• he felt better able to concentrate on the museum stuff than he usually would have been able to
  
• appetite was normal
  
• energy levels almost normal
  

I’m thinking it will need to be titrated up to reach a dose that helps him significantly at school but assuming we can’t do that until the headaches and irritability settle.

[MissHavershamreturns]

How was your day @carriebradshawwithlessshoes? Hop you had minimal side effects and calm, even if fairly subtle?