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

Sorry I meant hope not ‘hop’

Sorry there’s a mistake in my post above - tablet was just after the snack:

Tablet at 7.40 am (just after a small yoghurt)

Day 2 bedtime

Going to keep posting in case useful to anyone else considering meds/about to start

Bedtime went ok today and he was asleep by 8.45, so again a bit later than usual but not catastrophic.

So far on this dose anyway we don’t seem to be getting sleeplessness

could anyone with a 9/10 year old please let me know what the eventual titrated dose was?

I read somewhere they often end up at 20-30 mg, if that sounds right?

Appreciate its all very personal to each child and I will obviously be totally guided by the paed

How was return to school on meds and your day 3 yesterday @carriebradshawwithlessshoes? Did school notice any improvements?

Day 3

So far today seems a bit steadier for ds. Did same with meds as yesterday.

Ds is reasonably calm, doing some drawing and volunteered he feels he can concentrate 60% better on drawing than before the Meds.

Yes do keep posting Miss Haversham, it really helps as I think I said DS has severe speech dyspraxia so can’t verbalise how he feels. I know all children are different but it’s interesting to know how he may be feeling if it aligns with your DS at all.

So he went to school yesterday but school want him out (long posts on other threads), we are in the process of doing that but I feel school would be very reluctant to say anything positive about him in case we changed our minds and decided to give him more time there which is very sad, I know. Anyway his one to one said to mum yesterday he had been fine but she was really worried as he wouldn’t eat a thing and was he ill? DS eats like a horse so I said to DH last night we are going to have to tell them or they will think he’s coming down with something permanently! So we have told the Head today and asked for feedback from school tomorrow as I have an appointment with the adhd people on thurs so I would like to feed back from both home and school settings.

He is, from my observations, def calmer. If I was to say anything negative it would be 2 fold, first it has really knocked his appetite, he isn’t really bothered about breakfast or dinner either. He can’t lose any weight he is tiny as it is. Second, although he’s happy and engaged etc he does just seem a bit tired. Hard to explain, a bit ‘dazed’?? I’m used to him being super lively and super sharp but it’s like he has just taken a sedative. Less sparky. I know I can’t have everything!

@carriebradshawwithlessshoes I’m really pleased to hear it hopefully went well. Good to hear that he seems calmer. I know what you mean about a bit less sparkly - I haven’t seen that in my dc but have seen it in a friend’s dd who tried adhd medicine.

I’m sorry school aren’t supporting you - it’s hard enough being a mum of a child with SEN without that to contend with as well

Day 3

Today was reasonably positive overall. Ds seemed to feel steady and calm most of the day.

First day on Medikinet with no headache - WIN

But still grumpy at the end of the day around 4.45 - so that’s probably a come down mood swing. Still does worry me in case he would be like that in school

Bedtime as usual again and appetite still fine, which is good.

Should say I still don’t think it’s having a really dramatic effect in our case at 10mg, but ds certainly feels he can concentrate better. Still thinking we will have to titrate.

So finally we have an update from DSs lovely school.

By way of update they previously declared him unteachable due to his hyperactivity and inability to sit and learn and focus. They were really our driver for the meds.

They have emailed and said in the last few days they have found him ‘very different.’ Subdued, distant, unsociable, unable to focus and learn. Tired. Full stop. DH said anything positive? Their response simply ‘no.’

So now what? Help. Do we give or not?????

Hi @carriebradshawwithlessshoes I’m so sorry to hear about this really “helpful” attitude. As you say they won’t be minded fo point out any positives if that doesn’t fit with their strategy.

I assume you are only on day 4 today with the new meds? So really early days? Can you call the paed and ask their advice?

We were told side effects can settle after the first week and that most side effects appear in days 1-4.

Thanks miss haversham. I have a call tomorrow so will be asking this. Yes, is this just a bedding in period?? That’s the question. I had thought he had been so good though at home. So it’s really disappointing to get this from school.

And yes it’s day 4.

How did your call go @carriebradshawwithlessshoes?

I hope your ds is ok today - have been thinking of you guys

Day 4 and 5 report

Both days morning went well

No calpol needed - one day ds said he was headachey but his headache then went. No headache today.

Appetite and sleep still fine

But one night ds had a night time accident - this is not something he has done even once since the age of 4. He had been night dry since age 3. Very weird!

Still ratty in the afternoons - not convinced the medication is staying in his system the 8 hours it’s meant to.

Does anyone have any experience? Did switching to the 12 hour Medikinet XL or adding a short acting med at lunchtime help?

I can’t really answer your last questions Miss H but can say that I chat to some other people who have found success with medikinet for their DC and some do say they feel that it does wear off so give it in 2 lots, one to last til lunch and the next to last into the afternoon. It seems very individual to the child. Also a lot of mums talk about their DC who are of the age of your DS taking what to me sounds a v high dose so maybe that needs review? Remind me are you prescribed on the nhs or private? We got the prescription privately, we have 3 week reviews but if I’ve an issue in between I call and they will adjust depending on what they think so I do feel like I’ve a fairly open ‘help line’ so to speak. Again, you may have said but is your DS on the spectrum? Is he in MS? Apologies if I’ve missed that!

So yes, a long call with the provider today. I reported everything, word for word when it came to schools comments. I was certain she would say well carry on but she didn’t. She said that the most effective adhd meds ARE stimulants and she’s seen huge gains for slightly older children with these and they are the first line of meds to try. BUT she said she didn’t like at all schools comments that he was now anti social (repeated by them in a follow up call today) or distant and certainly that he lacked focus. She said the key was to improve focus and if that meant he was a bit quieter so be it but not with any negetive connotations such as anti social/ distant/ generally can’t be bothered which is what school are saying. She said that since they had been treating younger children these were v common comments she was hearing with stimulants, esp where the child was v light or small (DC is, he’s only 2nd percent centile.) She said for those children often any stimulant was just too heavy and the answer was often a non stimulant, reverting back to a stimulant (possibly) as they got older.

She said unfortunately this is all trial and error. She said rarely is the med or prescription got right in the very early days. She has prescribed a non stimulant however we are on hols next week (as in, away in a hotel) and I’m just nervous!! So our options are to persist for a week with medikinet, stop totally or switch to the non stimulant. This tho apparently takes at least 2 weeks to build in their system. We go Tues! So really torn what to do!!!!

Day 7 update

We’ve now been advised by the paed to tack on an immediate release to cover the end of the day where ds was getting emotional.

So he’s on the existing slow release in the morning - Medikinet XL 8 hour 10 mg plus an additional lunch time dose of immediate release Methylphenidate 10 mg.

Day 1 of the new regime today and ds was much better - he was tired and a bit grumpy around 5.30 pm but that’s fine because he’ll always be home at that time.

Any advice about helping kids through the come down from the meds greatly received - does anyone have any tips?

@carriebradshawwithlessshoes he is dual dx - ADHD and ASD in MS and we’ve gone private but have asked to be referred back into the NHS now

@carriebradshawwithlessshoes I’m pleased you got some advice about what to do. Might be better to press on with starting the new meds during your holiday? That way you have him under your eye the whole time and can keep a close eye on him?

Thank you for this thread. I have nothing useful to contribute yet as awaiting my son's ADHD assessment, but am reading your experiences with interest.

I’m glad it helps @AlwaysFireFighting

I have just been reading a book I got yesterday about the medication - A Parent’s Guide to ADHD Medication. So far it seems excellent. I would REALLY recommend. Wish I had bought it before starting DS on the meds.

It’s very reassuring and factual with lots of percentages

Thank you, if he gets a diagnosis, I will order this book too.

Quick update - this is day 10 of the meds and day 5 with the added immediate release dose with lunch.

In summary, he’s tolerating them reasonably well and no major side effects BUT both school and we are not seeing dramatic reductions on the adhd behaviour. The dose clearly needs to go up

@carriebradshawwithlessshoes how are things? Have been thinking of you