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

How are things with you@HauntedPencil?

Also how are things with you @NurseP and @dogoncouch?

Quick med break update from us. We didn’t top up on Friday, so the last meds he took were the morning med on Friday. Yesterday was day 2 of the complete break (nothing taken on Sat or Sun).

So far he’s emotionally absolutely fine, but from memory that was also the case on the first few days med free last time. Today is day three so will report back at some point on whether we see the same emotional issues as we did before. I’ve prepared him this time and said he might feel different and explained that could be the med break and nothing to worry about. I’ve told him why we do med breaks and asked him to let me know if he feels different from usual at all

I can see the return of a lot of ADHD behaviours as expected - running around more, lots of messing about and calling out and impulsive (accidentally rude) comments!

He’s also stimming more - he’s dual dx with ASD and the meds allow him the impulse control to exercise control over his stims where he needs to. His main one which has started during the med break is heavy knocking and banging eg on desk/bed frame/walls/table/doors which is quite loud! We take the approach of saying it’s absolutely ok to stim but people might find some of them unexpected so he might decide some are best kept for home.

Sorry to hear that Rhubarb - I am afraid we rely on melatonin…

@MissHavershamreturns yes, I did read that book - suspect it was on this thread that I saw it recommended. He didn't seem that convinced that caffeine had much effect, but we have it a go anyway. It was never going to be a long term solution but interesting to try.

Hi! We are fine thanks. My son is at a holiday club today. They take him for 3 hours. They have not seen him since before Christmas. They can really see the difference in him. He usually would have swiped toys off the side, gone in the kitchen, put toys down the toilet, lots of throwing all within minutes of being in the door. This morning he hung his coat up nicely and went to play with a car garage. He was really engaged with the toy and playing calmly when I left after a few minutes. So I am taking it as a win! We have no intention of having a complete break at the moment . Do you think having a break from the lunch time top up would make any difference. I do worry about him building up a tolerance.

Hope the first day of Easter break is foing well for you all so far.

Hi all sounds really positive Nurse. My DS went on a play date last eeek and the mum said she'd noticed a huge difference.

We've not considered a med break yet I've got my appointment in 2 weeks and I'll ask then. I'm also going to ask about melatonin before the long summer days and some advice on supplements

Hope your med breaks help miss H. I'd be tempted in the summer hols but jsut so nervous as he really seems to go bananas at least once in the first week back on. Maybe his consultant can help with advice

Posting quickly as we have family staying but will post properly later.

This med break has been completely different from the last one so far. No massive emotional issues, no tears which has made it so much better for ds. Today is day 6. Tomorrow is going to be our last med-free day (day 7). What we have seen is really significant ADHD symptoms coming back eg we went to see Mummies on Tuesday and he really struggled not to talk during the movie and dramatic levels of stimming daily, which usually he manages to keep to when he’s on his own.

@MissHavershamreturns , so glad to hear this med break has been mostly a positive experience! What a relief. Now you know you could do this more often to allow DC the growth he needs and reduce the chance of tolerance. Bravo!

@LoveMyADHD , that sounds really interesting! I will do some more research on that. I'm thinking to have a med break during summer holiday too, but unsure about it - we'd be traveling abroad and I need him to stay calm and alert. Maybe we can give this a try!

We are on Day 6 of med break. Honestly, DH and I couldn't tell a huge difference 😂 I do have doubt if the medication actually worked at all, as he stayed calm and still has a brain to think most of the time. No meltdowns or tantrums, no wild running or headlessness like he had before we started the med. Weird! Maybe the symptoms only creep back gradually?

At last meeting with his teacher , she did say she noticed the difference in terms of concentration and less distractability. But I really started to have doubt 😅

I plan to let him get back to med after tomorrow. We will see them, I suppose??? Weird!

Fingers crossed for you it's all smooth going back on

Sounds good @MissHavershamreturns . Hopefully the breaks will help him to maintain a healthy weight and reduce tolerance to the meds. Glad this time was easier for him.

That sounds so amazing!

do you just give that magnesium? Nothing else? X

@LoveMyADHD By the end of today, DH very firmly concluded the symptoms are creeping back gradually. A bit more everyday. He put it like DS has gradually lost the "training" that the medication has given to his brain and he's a bit more lost everyday.

There's no sudden drop of behaviour level and emotionally he's been fairly stable (on that note, there's no work to do at all in the past few day! All about play and getting treats!) He didn't show sign of dangerous play until this afternoon - nearly crashed DS2's night guard.

His mind is a little more absent than yesterday too and drifting away more easily.

But he's still a lot better than right before the medication. So DH is fairly sure the effect of medicine fades gradually with him and would not want him take another break. (Somehow, he believes the training from the meds "help" to train and mature DS's brain).

So, I guess I posted too early this morning? 😂

Today's brief report:

Day 7, the wild kid finally returned in full strength - currently playing wildly indoors in a holiday house with DS2. I've constantly on the edge the entire day (as before med) that sooner or later someone would get hurt or things get broken!

So in our case, an interesting experience for med break. But I'm going to put him back on med tomorrow...

I've been constantly

@Return2thebasic you and me both on the adhd behaviours! Could not believe how hyperactive and loud ds got by the end! Hope your return to the meds today went ok.

Nice to see you posting @LoveMyADHD and @NurseP and hope you guys had a nice bank holiday today

@HauntedPencil I will be really interested what advice your consultant gives on med breaks!

@NurseP just read your really positive report about holiday camp and that sounds such a win. It’s amazing to see the difference the meds make in so many ways. Really glad for you.

@Marchsnowstorms how is your med break going?

@rhubarb84 how have you found starting the meds so far? I think you were planning to start this Easter?

@dogoncouch hope all good with dgs?

So for us today is the first day back on the meds.

We did a 7 day med break and no emotional issues, but ADHD symptoms out in full including issues with calling out in the cinema and car journeys, lots of stimming where it was awkward eg loud tapping of seats at a train station.

Today going back on wasn’t easy. About 2 hours after taking his morning dose ds had a bad migraine. Spent quite a bit of today in bed pale. Could be coincidence but seems unlikely given the headaches ds went through when he very first started the Medikinet.

MissH, Sorry he was unwell That's how my son was on one of his dose increases. Very pale and off colour. I am so pleased with his progress, waiting nicely to go into Saturday club, recognised his name written on his peg. I just hope we don't have to take breaks as it will be so hard.

@MissHavershamreturns thank you, well we're on the 3rd consecutive day here, after doing just 1 day last weekend.

Fortunately so far no sign of the sleeplessness returning which is a huge relief, but who knows what's around the corner... Also it has to be said, no real sign of any other effect either! At swimming today as usual his teacher was having to call his name a lot to get his attention. Perhaps when I don't hear his name shouted across the pool every week I'll know we've got the right dose!

I've managed to bring the medication review meeting earlier so if things carry on like this I imagine we'll be asking to increase the dose.

Sorry to hear this, when we first started my DS was like this for a few days & as white as a ghost etc. I'll definitely ask about the breaks and let you know. It's interesting to see what all the various consultants are saying!