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 think the whole brain structure alteration is temporary, definitely goes back to normal after you stop the meds but not straight away

looking at how it worked for my kid, the more we used the drugs without break the longer it took him to “come out if it”, the “rebound” effect was really intense

hence it’s just good to have breaks but yes they’re bloody painful!

@LoveMyADHD It truly doesn't sounds like a process which a weekend can accommodate... That would have been ideal though.

By the way, after each break, would they have to go through the initial side effects before settling again?

@MissHavershamreturns , hope your DS is doing better after restarting the med. It's such an emotional rollercoaster. But hope all is restored to their better way.

Thanks for asking after us @LoveMyADHD and @Return2thebasic

Ds had his first day back on meds yesterday and it wasn’t a great day as he was still very emotional and not settled. A bit like when we first started the Medikinet I guess.

But today is day 2 back on the meds and he’s much better. He seems a lot calmer again and more himself. He sat down to do some homework and concentrated better again.

I was thinking of doing a week off at Easter but I’m not sure how that is going to go. Ds gets so tired at school as he has to work so much harder than other kids to just make it through the day. He really needs his holidays to recover from the stresses of term time and enjoy himself.

Not great to think he’s going to have to go through this break experience every half term/Easter/summer/Xmas and I just don’t think it’s easily compatible with working parents and holiday homework.

Anyway for the moment all’s well that ends well as he’s back on track and had a nice meet up with a school friend today. They seemed to have fun together which was good to see.

@MissHavershamreturns , good to hear it's getting back to normal and he's taking back control. Did he talk about what he feels about the med holiday since then? If he hasn't yet, maybe in a day when he's calm and confident, have a discussion about it. It must be hard for him to summon the courage to go through it again - the feeling of losing control must be dreadful to face...

On a different note, have you talked with his doctor for weekend med breaks? I know the med might exist in the bloodstream for much longer than 24hrs. But I got a feeling it all depends on the person and nobody can say for sure. I completely get what you say about a supposedly enjoyable school holiday became a minefield for him and each member of the family. Maybe worth considering as breaks at weekends would be a more regular basis whilst with very short disruption. If it happens frequently, the rebound effect may not present as so fiercely due to the accumulation of built-up, iyswim. Just a thought anyway - maybe you've considered it already.

Well done for him to have nailed it and had a great day today. Well done to you for having supported him while staying strong all the way through. It must have been one of the longest week since ages...

We are having a Med free weekend & DD appears to have ground to a holt.
Can't get motivated to do anything. Prob a teen thing too but hard going.
Missing the previous energy & fizz!

When I asked our Dr about breaks, she said it wasn't needed for my boy unless his weight drops. Do you think this is the case?
So glad that he is back on track @MissHavershamreturns but you are right, it will be very difficult to have this in the holidays when you are at work, and he needs to be able to enjoy his break from school and relax. Very difficult situation.

Update on concerns about height, after meeting with doctor, DS wants to try long break from medicine to try to make sure he doesn’t miss his growth spurt. We have ‘agreed’ that if things start going badly at school, he will need to go back on but I feel we are up against it, if he doesn’t start growing!
LoveMyADHD you mentioned that you find some supplements helpful on med free breaks. Would you be able to point me in the right direction?
Wish us luck!

If you can have a read on Finally focused from James Greenblatt (US psychiatrist)

for us best best supplements ever
Natural vitality: Calm magnesium
zinc picolinate
b6 liquid
vitamin d liposomal
mucuna pruriens

different child after couple of weeks of meds break xx

LoveMyADHD thanks very much 🙏. I will definitely try to get this book and look into the supplements. Very helpful x

@LoveMyADHD Did you follow his suggestion for daily dosage of zinc? I'm a bit unsure for zinc supplement.

Yea we did and our psychiatrist was totally ok with this

i guess if he’s ok we re ok too

x

We have the 5mg immediate release tablets to try the top up. We are going to start on Saturday.
Hope everyone is doing OK. X

Pleasure lovely

have to say I removed (most) dairy products too. I was giving him too many especially as we wanted him to put on weight and it really wasn’t helping him

if I give any now I give it with a specific enzyme to help him break it down ; there is a therory around dairy and Adhd and not everyone is affected by dairy but my kid definitely was!

@NurseP Good luck!! Hope it works out x

Has any one got info re dairy & ADHD? Is it the lactose?

He took the tablet just fine. We will see how he is on them. He has been to the Saturday club this morning.

Perhaps for some
for others could be the casein which is hard to break down (I give DS an enzyme to help)

not sure it affects everyone, it’s a theory some are experimenting with ; theory behind this is the overload of casein which ultimately affects the brain, so just minimising dairy might help , but again it doesn’t affect everyone

Thanks for sharing @LoveMyADHD I'm really keen to try this I mean it can't hurt! Where do you buy the supplements?

DS has been quite calm since the episode - and in a nice bit of unexpected good news he's been accepted for shared care at the GP so his drugs are now free.

Thanks all for your nice messages about that. It's a stress all this isn't it bloody hell.

Hope your all doing well.

Well he took the tablet just fine on Saturday and Sunday . Today at school, the teacher tried to give him and he got really upset and distressed! She took it away and tries again a bit later and he took it straight away. Very strange!!
I haven't noticed much difference to be honest, perhaps a little calmer in the evening. We will continue and see how we go.
Hope everyone else is doing well.

Update here is DS asked to go back on the meds. He only lasted a week off them. He said he was just so sleepy in lessons, he couldn’t focus or even keep his eyes open! He was surprised how much he needs them. Upshot is he’d rather be short and medicated as the un medicated experience was a bit scary. Bless.

I’m giving him supplements too and reading up on how to help in a non medicated way but really wonder - is it Ok to be on Medikinet for life?!
Worry, worry ….

I have to say we re giving DS a supplement called Dr Taller that claims can give them some extra inches

funny enough I’ve seen increase but not sure if it’s good for wveryone
it’s expensive too
you might want to look into it? x

I get mine from Amazon but I get reputable brands like Life extension, Vitality and Pure Encapsulation

if you’d like to read up on Finally Focused by Psychiatrist James Greenblatt he explains the science /reason behind some key vitamins; example magnesium is depleted with meds and zinc is needed for Medikinet to work

its interesting read and at minimum but helps meds be more efficient x

Hi all, just a quick update from us.

The return to school after the med break was rocky for ds and he had a significant meltdown not having had one for months. It might be completely coincidental, but I do wonder tbh as the med break really unsettled him. He is known to be very vulnerable in terms of mental health anyway and has been for at least 18 months.

We will give another med break in the first few days of the Easter holiday, but we are seriously considering going back private and finding a consultant who will support ds not to have the minimum number of breaks medically advised, provided the weight continues to go up.

On the plus side we’ve enabled his brain to have a three day break, so if that helps reduce the risk of med ineffectiveness then that will be good. We are going to do another break in the first week of the Easter holiday.

There was quite an important typo in that last post as we DO want to have the minimum number of breaks the drs advise. Just keep it to a safe minimum!

So we want to “ONLY have the minimum number of breaks medically advised, provided the weight continues to go up.”

Basically we get the need to have breaks and will of course follow medical advice on that, but doing it really often is not necessarily going to be that east for ds.