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

@KnottyAuty that’s ok! It was nice of you to ask!! Is your dc on meds or are you thinking of starting?

Hi @MissHavershamReturns - my DS has been referred to CAMHS and after a long wait we are hoping he might be seen next month. He already has an ASD diagnosis so it's difficult to tell what is down to that and what might be AD(H)D. But as he has got older and school demands have gone up, his constant wriggling is more obvious (except when staring at a screen!) and he struggles to stay focused. I'm fairly sure he will get the diagnosis so we will try the meds but I am also looking at neurofeedback for long term. The interplay between ASD and ADHD is slightly strange - it's almost like the ASD is comforting and brings strength, but the ADHD stops him using that strength.... All very confusing!

@KnottyAuty I completely agree that it’s so hard to tell what is caused by the ASD and what by the ADHD. All I can say is that we thought the anxiety was all ASD related, only to discover on the meds that a lot of it must always have been the ADHD as my ds is so much less anxious now he’s medicated.

I hope you get clarity when you get to the appointment - I’m sure you’ve seen upthread that there is an amazing book on ADHD medication written by a Great Ormond St consultant and Professor. It’s well worth reading before you get to the appointment I would say, as they often do the diagnostics and discuss what medication regime to start on at the same time. Have you had forms for you and school to fill in yet?

A quick update from us. For the first time ever this week we forgot medication for ds. It was very apparent that there was a huge difference with him unmedicated as he was very manic and loud. He was much more anxious. So if we had any doubts about whether the medication works this accidental no meds day definitely proved it does.

It did make us worry about holiday medication breaks though - as ds is so much less anxious on the medication and is eating really well we would like to keep going with meds through school holidays as far as possible. Has anyone else managed to get this agreed with their medical team?

@carriebradshawwithlessshoes how are things for ds and you now? Have been thinking of you

@AlwaysFireFighting are you still trying the medication for yourself? If so I hope it’s doing something now and not too many side effects

@Fluffyslippersohyes did you guys get a chance to make a decision yet about whether to try meds for your ds? I know it’s a huge decision to take.

@pumpingRSI I hope you are all ok. I know you were also thinking through what to do for the best on the medication front. Did you reach any decisions at all yet?

Thanks @MissHavershamReturns. Very interesting on both the anxiety improvement/effects and also the book - now ordered and delivery is eagerly anticipated!

I've got no personal experience to share but a friend's son is on meds for ADHD (don't know which) and he has opted to take them every day as he feels so much better in himself. No idea how they squared this with the Drs but maybe your son might be able to raise it at a future appointment if he would find it beneficial? What does he think about it all?

I think he wouldn’t want to take a break, but I can’t ask him as I think the idea would really worry him in itself. If I ask him how he feels on the meds he always says “happy”

Very good to hear about your friend’s ds, so fingers crossed it’s not necessary always to take breaks.

Hi there - we have a six year old (nearly 7) who has been on Medikanet for 10 months - gradually increased dosage from 2.5mg to 25mg. We also put him on melatonin at night which made a massive difference. Our (private) doctor has never suggested a break from the meds - except melatonin (maybe once every 14 days) but we do try to give a break on holiday, especially if it is just pool/beach. Our doctor on the contrary almost questioned why we would give a break as it just makes things more stressful for the whole family.

Hi @Hels20 that is so helpful- thank you very much. That has really given me hope as I don’t think ds could cope with coming off and on Medikinet. I am going to send you a pm for your dr’s details if you don’t mind, just in case ours tries to force medication breaks.

@Hels20 do you feel the meds have really helped your ds? I would love to hear your thoughts and any top tips

Thanks for the pm @Hels20

@KnottyAuty glad to hear you’ve bought the book and let me know what you think when you start reading

I’ve just reported my own op and asked for this to be moved into sn children as I realised just now this will be removed after it’s been up 90 days and I don’t want to lose all the helpful comments from everyone on here!

Great to see the thread has now moved and won’t be deleted.

I think lots of us are probably on holiday for Easter, so I’m just going to post some random questions that have come up for me on meds over the last week.

For one reason and another ds has needed/we’ve considered giving a few other meds, so I’ve asked a bit about medicine interactions over the last month.

GP said it’s perfectly ok for dc to have the covid vaccine while on stimulant meds and you don’t need to stop the meds that day. Probably obvious but I wanted to ask.

We’ve also been told paracetamol is fine. Also a penicillin based antibiotic ds was prescribed recently.

For travel sickness meds we were told by pharmacist we needed to ask the gp before giving them, but haven’t had a chance to do that yet.

How is everyone? Hope everyone had a good Easter break.

I will keep on posting updates on here over the next few weeks - I’m expecting another medication review and at that will ask for ds to go up to 15 mg to start over May Half Term.

This is such a useful thread! We might be in the same boat so commenting to save

Pleased to hear that @brushlaptop

I would recommend reading the book mentioned up thread before you go into the diagnosis process as you often get the final stage of assessment and medication recommendations on the same day

@carriebradshawwithlessshoes how are things with you guys? How is the medikinet going?

Quick shout out to @KnottyAuty @AlwaysFireFighting and everyone

Any updates from you guys?

Waves @MissHavershamReturns. Not much news here - we are waiting for our ADHD assessment appointment which is very soon. I started DS on a supplement Gingko Biloba (sp?) because it is supposed to help with attention and helps the med be more effective (? according to an article on ADDitude). Having seen a couple of other professionals recently I can't believe I didn't see the ADHD before. He just can't focus or sit still unless it involves a computer or train set! no hope for school work! How are you gettting on?

Hi
Hope it's OK to crash the thread. DS3 is 9, just started medication yesterday. He was diagnosed ASD age 4 and ADHD age 7. Moved to an independent special in Yr 3 and his ADHD had become much more noticeable.

It's Medikinet XL 5mg.

I am very concerned it's going to make after school worse as that's already incredibly challenging. He gets collected at 7 45am and home around 4pm.

The paediatrician said we'd have to trial it for a "good while" before changing dose etc.

Its day 2 no noticeable difference.

Gosh @ArianaDumbledore - our doctor agreed to increase dose after 1 week (from 2.5 to 5) and then 2 weeks after we were allowed to increase to 10mg. If it doesn’t work, it doesn’t work because it is a drug that gets out of your system v quickly. Interesting that you have had different advice (we are now on 25mg - 15mg in morning and 10 mg in afternoon as we noticed effects wearing off after 4 hours).