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

He was withdrawn and quiet most of the eeekend but he tends to get like that when he's had an issue like this at school he's really regretful afterwards and feels awful - Monday morning really withdrawn but perked up around 3 and seems a lot better today - did you have the same Nurse? I'll give it to the end of the week and if he's still like it I'll ask for a call with the pead but I think maybe we are slightly turning a corner. I do think he needs more than 20 maybe we ought to have jumped to 25 first!

Well done that’s amazing!!!

it took us 4 months to get to NHS prescription stage but still need to go to private consultant for any big changes/reviews
it feels good not to pay for every little thing anymore but .. private route best investement ever!

not sure who mentioned they don’t give a break from meds (@NurseP was it yourself ) just wanted to mention our consultant insisted he had breaks in the Xmas period (he’s studying for 11+ now so he can’t ) as it’s likely the drug builds tolerance … so something potentially to think about

Yes it was me who doesn't have a break, we weren't told to. My son has severe learning disabilities so it's to make him more 'manageable ' rather than to help with school work.
The weekend that we went from 15 to 20, he was very withdrawn and off his food. This lasted about 3 days though did begin to improve after the first day.
When we went to 30 from 25, this is the week he was very unsettled and had these sort of surges where he was pushing, throwing and jumping- not sure if anger or just sensory craving but very difficult to manage.
He does seem to be settling a bit but I have noticed he is not sleeping as well and takes longer to get to sleep and often wakes in the night. Maybe this is because of the increased meds? Who knows?
Very glad to have you on this thread to worry alongside me!

We don’t have breaks at all. It was discussed but ultimately decided not to as ds is so very anxious. He’s been on them for over 6 months now without a break.

The medication book says there are two differing schools of thought among doctors. Some strongly recommend breaks and some don’t. Our consultant prefers breaks but goes on a case by case basis.

@LoveMyADHD is it definitely the case that tolerance develops, really interesting as it’s not something we’ve been told.

Mine said they used to say to have breaks but she feels that it's as important he can enjoy his time at home and his hobbies with the help the meds give him (when going well!) and we've found that with stopping changing it causes issues with behaviour - I think we'll not for now, but assess when he's steady on a dose.

She didn't mention tolerance but I'll ask about that

@HauntedPencil yes so true as time without medication actually feels worse than before !

@MissHavershamreturns I’ve noticed the past week 40mg doesn’t work as well as it used to .. but he’s had no break since beginning of September due to exams. We re planning to give a break when they break for Xmas and check if 40mg has the impact it used to.
but God knows how we ll survive this as he’s unbearable without medication (I’ve actually got some supplements to try, they’re very likely to be crap but better than nothing at all!)

Fingers crossed for you - I find with my Da this run up to Christmas js the absolute worst he's excited out of sync etc etc same for his birthday.

I've learned a lesson about changing meds and will try and tie it in with a quiet week or school hols in future I think. He's been better this week but last week was hard going.

I find the meds are helping but for is occasionally causing bursts of behaviour issues like happened last week instead of the constant constant lower level issues - but his writing and enjoyment of school have improved which is what our aim is. Hoping it'll even out

We had a brilliant time at the Christmas activities afternoon. My boy was happy to do the activities and engage with staff. Normally if I am at the school he is so confused and unsettled so that was a real win. Much calmer over the last 3 weeks at his swimming class, able to play calmly and focus on the toys so that's lovely to see. Still have the odd outbursts but improved this week from last.
I had the review over the phone with Dr. We are staying at 30mg untill after Christmas and New year at least. I am glad. There is too much going on and a change in the meds may not help at this time.
She advised no breaks for now as there is no concerns over his weight.
Hope everyone is doing well.

Really great news Nurse - we've had some improvements over this week and hopefully settling a bit not in any rush to go up so will see how this goes for a few months

@NurseP and @HauntedPencil great to hear that you’ve had some improvements.

@NurseP that sounds amazing about the Christmas events and great to hear your dc is enjoying school more and writing better @HauntedPencil. My ds is also writing much better and in fact the meds book lists better writing as a potential additional impact of ADHD medication.

@HauntedPencil we also learned the same lesson and did all our last few increases in the holidays. I find it works better as even if still stressful I can keep a close eye at least and any unusual behaviour connected with the increase then only happens at home. The only downside for us was that it made titration slower which was a big trade off given how much better ds is at 30. So no perfect solutions!

Just another update here, we've moved over to shared care and we've just been for her first 6 monthly weight & BP check. Her weight has dropped slightly but we knew it had, I'm not really too worried as now she's stayed on a dose her appetite is improving. Her heart rate was 90bpcm though and her BP was up, although still OK, did anyone else find this? I know obviously a stimulant will increase heart rate but I'm also a little concerned.

A bit less of the heightened episodes this week. But my son is often quite tearful and unsettled in the evening, about 6 pm till bed time ( usually about 7) . Could this be some sort of come down? Anyone else seen this with medikinet xl?

Yes we've had this - the worse time was when he'd just started on the one a days back a few weeks ago.

Did it resolve itself , Pencil? Or did they give a top up? What did they suggest? Now I'm worried about some sort of 'come down'!!

It did get better - I find he's a little bit emotional some evenings depending on how his day has been but maybe that's just a different reaction to the more angry one he'd have without the meds - it was every evening for a week when we first started the one a days though and it's better now. He's also settled down a lot better on the 30s.

How's things going for you?

Just to report from us we definitely developed tolerance as he was told off last week for calling out (hasn’t happened in 6 months nearly!)
also I could tell when I was picking him up drug was out of him where normally it lasted up to bedtime

we’ve been giving it non stop since September start due to 11+ so totally not surprised

on top of it the rebound the next day was awful it was like full on Adhd times a million than before

he’s off it for last few days and he’s getting back to normal, by Jan hopefully tolerance will be gone

so potentially something to watch out for (doesn’t happen to everyone though)

Still up and down in the evenings. Starting tomsee a bit more focus and almost at times which is good. Hope the Christmas holidays doesn't set him back!

@NurseP if you continue with the dosing this Xmas I’m sure he ll be fine
will you increase at all?

@LoveMyADHD we will have a rv in Jan/Feb . I don't want to increase over the holidays but I think we will after..

Ok I’d thought it’s a good idea since you’re there watching him and you can review yourself

totally understand why you don’t want to though

One issue I’m having is eating…..or should I say lack of eating since starting the meds. I’ve switched to school dinners every day, but I’m not sure how much of that he’s eating. At night he just wants to have bits of fruit, a milkshake or yoghurt, sometimes garlic bread. But he’s just not interested in food at all a refuses 95% of things offered - which he would have eaten pre-meds. Any ideas on how to get him back on track?

One plus one- could a big breakfast before the meds help? Mu son ears poorly at school buy does OK at home.

I think the change of routine at Christmas and an increase would be too much for him.

He’s just not interested in food and is not hungry enough to be so. Sometimes he will have more than one weetabix in the morning, but half the time he can’t even finish one. He doesn’t like anything overly sweet and has a tendency to stick with one food item for a week or two before going totally off it. This morning he’s had a small bag of breadsticks and a small cup of apple juice.
I’ve been trying to encourage him to see what he’d like to make to eat, but again no joy. Previously during lock down he really enjoyed hello fresh and so on…..tried to get him to pick something this morning and no recipes appealed to him.

That sounds really hard one plus one. Would he drink milk? My son loves milk which I am really glad about.