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

Thanks for this. I'm going to check out the book now. His teacher sent me this email on Friday

"We did notice a really big improvement yesterday - I was surprised for it to work immediately too but there has been an improvement in DGS's concentration and the quality of work . (You'll be pleased to hear he completed some challenges in Maths!)

Also - he usually swings on his chair a lot throughout the day but I didn't see that at all yesterday. The only other difference is that he has been a bit reluctant to join in PE/Computing which is unlike him as he usually enjoys these lessons. He is very engrossed in reading Harry Potter and I think he's finding it hard to pull himself away from it."

Does this sound like we have got the right dose?

On the down side - as I mentioned up thread - DGS is really good at his sport, mostly in the top 3 at regional competitions. I'm hoping we will get to a point where he won't need to take the medication at the weekends because of the issue of methylphenidate being a banned substance in his sport, though there are ways around it. But this weekend I gave him the meds on the advice of our nurse as it's so new for him. Now this may well just have been a coincidence but it appeared to me that at his training on Saturday and at the race yesterday, he had lost his edge. It's hard to put my finger on exactly, I think maybe he wasn't so hyperfocussed and competitively driven as he usually is. This sport has been so good for DGS over the past year - building his self esteem, teaching him resilience, making him work hard and teaching him to loose graciously. I really don't want anything to impact this. Does anyone know about the impact of methylphenidate on sport?

Hey @dogoncouch yes some parts of his life might be impacted and sport might be one of them

with the drug they’re is more reasoning in their brain, they think twice before doing something

my DS was A1 on drama (he’s going for 11+ scholarship) and when he started meds he went down to C3 😫

we can’t have everything I’m a Friday 😉

Meant “I’m afraid” .. I’m definitely not Friday 😣

Hmmm a trade off! Maybe the answer is to stop the medication at the weekend. I will speak to his nurse. Did your son mind loosing his drama edge?

I minded more than him especially as he’s going for scholarship 😉

some of the best performers and athletes have adhd , it’s what gives them the extra something that is very similar to typical people… I guess it’s for us to accept

for me I’d rather have him excel in classroom than on stage 😉

Meant to read : *very different to typical kids (not similar )

my typos are awful today.. I might get some of DS’s pills 😆

@dogoncouch the first few weeks of taking the meds are often atypical and kids often have temporary side effects even if minor. So any temporary dip in performance could just be that iyswim

@dogoncouch it may be temporary. My DD plays a team sport at extremely high level and I worried the same. It has helped her focus better in training & I remind her to hyperfocus in games etc and put all other thoughts out of head. It's such a balance

Well a few developments here. We are going to try concerta to try and reduce the mad hour in the late afternoon/evenings.
I am a bit hesitant as he is in a good place but don't want to not try this if it can help him more . There has been a lot of supply issues with medikinet and at the moment, I have 8 left and can't get any more locally at all! I think the script for the concerta will be here soon, they will post it to me.

Any experience of swapping from medikinet to concerta?

If he won't swallow the concerta then we will have to stick with medikinet if we can get some, although I have been told that equisiam is the same as medikinet but just a different brand and is more readily available at the moment.

Anyone else had to change brands?

Feel very stressed about it all to be honest.

Hi @NurseP - so sorry to hear supply issues with Medikanet…

Our DS is 7 and has been on Medikanet (now 15mg in morning and 10mg at lunchtime) for 18 months. It has been a game changer for us and is not perfect as he can have a terrible “crash” at about 4pm. However, in the summer - to avoid the “crash” and to avoid having to take a second dose, we switched to Concerta. It was an awful experience - even though we tried both a higher (35mg) and then lower (27mg) and then 18mg dose. He was utterly miserable. We persevered for 2 weeks, spent £180 on the meds and then had to go back to Medikanet.

So I am sorry but I can’t be positive. I also understand that Concerta is slow release whereas Medikanet is a mix of fast and slow release.

BUT every child is different.

Thanks . I feel we have to try it . We can always go back to medikinet if needed.
I guess I feel a lot of guilt as it's not his choice to take the meds.

@NurseP it can be so hard having a dc with ADHD or ASD or both. Don’t feel bad as you are only doing your very best to try to look after him.

We were told that if ds continued having the medication rebound crash (in our cash around 2ish) on medikinet after adding a lunch time top up, then the next step was to try concerta, so it’s clearly something they often suggest.

Our paed told us some kids do better on concerta. Fingers crossed your ds will be one of them.

In our case not in our cash.

I should have said that the immediate release top up of 10 mg worked for us, but it obviously doesn’t for all dc.

We switched as High School age. My DD would never remember to go to the office to get meds at mid day. So slow release sees her through from 7am-7pm. No massive crash. 18mg

@snowtrees is that concerta? How many hours is it supposed to last?

Yes Concerta XL and 12 hours approx

I have Equasyum js that the one you are struggling getting hold of?

It was a hairy few weeks but after that he settled down really well.

Sorry just seen - I understood that the equaysum is Medikinet but a longer lasting version - the problem we had was that he was crashing at lunch and the school just constantly forgot to call him to get the lunch one so this worked better for us. They did say he had to remember but that was totally impossible

Is there a particular reason they say Concerta over equaysum I wonder

My understanding is equesium is an alternative brand of medikinet and the concerta is even longer acting. I can't get medikinet at the moment. We are waiting for a prescription to come through for concerta but need to have some medikinet/ equesium in case he won't swallow the concerta.

Ah ok. Ours is a slow release but it does wear off at about 3/4 PM at first he was angry and crying but now he just talks and is super bouncey which is fine. So I guess if your finding the crash is difficult it makes sense to see if that helps. I've found every time I've changed meds there has been a bit of a settling in time I think next time I'll wait until a school holiday.

Our crash is about the same time, 3-4 pm and he is just so wired and heightened, even at about 9pm! I am Hoping concerta will help with this.

Concerta lasts around 12 hours

That's good @snsnowtrees . Medikinet/equisyam is about 8 isn't it? so hoping concerta will help with the late afternoon/ evening shenanigans!!!

Today is day 1 of concerta. He swallowed it ok. Hope it helps and he continues to swallow it whole. Started today as only got 7 tablets and want to get prescription sorted early in week so don't run out I'd he is to continue with it.

Good luck with concerta @NurseP

Please stay with us here and keep posting - lots here are not on medikinet so it’s really become a thread for adhd medication in general.