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

I need to dig out the paperwork she gave me. I think it might have been about adding a second dose, as I was a bit unenthusiastic after she'd told me after school would probably be worse.
He's so difficult to manage after school as it is.

@ArianaDumbledore no medical training at all, but I think it’s seems a small dose to start on at unless he’s very light? Or known other issues with sleep? Maybe ask why he hasn’t been started at 10?

My ds is 10 and started on 10. We haven’t moved him up but I want him to be.

I would really recommend Prof Peter Hill’s adhd medication textbook - A parents guide.

we needed a top up dose at lunchtime to stop ds having a big medication rebound in the afternoon. Maybe worth asking about this if you find any effects like that.

Why would adding a second dose make it worse? We’ve found with a second dose we get no Comedown off the meds at all

@KnottyAuty a wave back to you! Well we are just a bit baffled ds’s dose isn’t getting increased. He was started on 10 and that’s where he still is. I thought the point was to titrate up!!

@MissHavershamReturns sorry I think I've been quite garbled. She said his after school behaviour will likely be worse, but I'd have to wait a good while until she would consider allowing an afternoon dose. She was more pushing a parenting course tbh. It's not even a free one!

I've found the clinic letter and it says to stay on this 5mls once a day for 6-8 weeks before reviewing.

He's not light, 31 kg but only 131 cms so his BMI is at the higher end of healthy.

I'll get the book ordered, thank you.

It's his first day back at school for 4 weeks as they have 3 for Easter and he had Covid the week before.

I'm hoping he's OK in transport as it's a long journey

What age is it possible to start adhd medication?

@doglover12345 - we were told 6 years is the minimum. Not sure if that is true but that is what our doctor told us.

The youngest I've heard of is 4, but with diagnosis not usually happening to 6+, it's probably not that common.

@doglover12345 the meds book says in UK 6+ is usual. Under age 6 they are “off label”. NICE said in 2018 that they can be offered off-label from age 5 - again stated in the book.

It says in the book they will consider meds for young children where they are very disruptive in settings or family at risk of falling apart.

@ArianaDumbledore That’s very annoying about the parenting course. I thought the new NICE guidelines didn’t require that?

I have to say though we did one and it was very helpful, so if you do end up doing it even if it’s pretty annoying to be asked to then it might still be handy.

It's an intro to ASD parenting course. Ds1 is 16 and was diagnosed aged 3. Ds3 was dx with ASD 5 years ago and ADHD 2 years ago.

I'm not so arrogant I think I know it all, but its a privately run course so you have to pay £95. I actually don't think the NHS should be signposting to it tbh. She built it up so much, I had to wait for the clinic nurse to take DS3 to play next door so she could tell me about this amazing support I could access. I was glad I was wearing a mask when she did the big reveal!

I did an intro course when DS1 was diagnosed which was ok

Hi all,

Just checking in quickly to apologise for not posting for ages. Still here but a lot going on at the mo (nothing bad, just busy) and just don't have time to catch up properly on thread and add my own updates. Will do when I can (may not be for a couple of weeks). Hope you are all okay.

@AlwaysFireFighting Great to hear from you and sounds like you have lots of competing demands on you! This is an ADHD-friendly zone with no pressure whatsoever, so please keep popping back just whenever works for you and will be very interested to hear about your meds journey when you have time to say more.

@ArianaDumbledore I can’t believe you have to pay that much - I think it’s crazy the nhs are recommending that. We got our course free from a local charity and it covered both asd and adhd. I really sympathise because I would be angry if I was asked to pay for that

So the diagnosis is in and we will start titration soon... Any reviews here for a Methylphenidate in sprinklable or liquid form? Worried about potential weight loss side effects. Thanks!

@ArianaDumbledore that course doesn't sound that great does it?! I was pleasantly surprised when our Dr said that accomodations we had been doing for the ASD had been disguising the ADHD for years - poor fella... feeling guilty.... I think they have to suggest it as first line treatment so if you can bear it maybe write down all the training/coaching you have had over the years (it will be more than you think - all those "therapy for the child through the parent" discussions you have had for starters) and all the things you do to support them already. That will tick their evidence box and you can move on?

@KnottyAuty To get methylphenidate in liquid form, the chemist needs to get it especially made at a compound chemist, with the drs permission (they don’t like too as it costs a lot more) I had this with ds as he won’t swallow pills, I had a lengthy discussion with a couple of pharmacists, we crushed methylphenidate in the end and added to smoothie, you can add it to yogurt too. Ds doesn’t take that anymore. If you want to know anything, I don’t mind. Ds took it for 8 months x

To anyone else reading, is anyone on strattera / atomoxetine? That’s what ds is being changed too.

He’s having liquid atomoxetine, it’s £85 a bottle! 😬 thankfully CAMHS adhd team are happy to prescribe that. As you can’t crush the pill version and ds can’t tolerate pills. Just hope the liquid tastes ok, or he won’t have it. He’ll point blank spit it out. What a polaver!

@KnottyAuty ds special school added it to blackcurrant juice for his dose there, you can add it into anything, they tell you that you can’t, but honestly we put it in all sorts for ds, nequik / yazoo! Activia yogurt etc. (Methylphenidate fast release x 3 a day) you can’t do that with the once a day slow release tho.

*nesquik obviously that was supposed to be!

Thanks! I think he will need the long release ones. Medikinet XL & Equasym XL have beads that can be poured out. I'm feeling slightly nervous now as we are on the private route at the moment and £85 a bottle sounds like a lot!

@danni0509 can I ask how your DS got on with the stimulants and why you are changing? I did wonder if we might end up the same because of the dual diagnoses thing

@KnottyAuty
Ds has got moderate autism / severe adhd, moderate learning disability, he’s got horrendous anxiety too, it wasn’t so horrendous (just moderately so) but methylphenidate has exaggerated it, he’s really controlling, (was controlling previously, but not to this extent) v demanding and honestly sounds awful but he’s been utterly unbearable to live around this past few months.

He’s been like a different child, gone from mostly happy (and totally nuts!) to the most miserable child, cries all the time, never wants to leave the house, if we get him out he just wants to be back at home, hates visitors, his nana who he loves he doesn’t want her to come, he’s controlling everyone at school like puppets on a string, wants the staff to stand or sit in certain places, say set phrases to him or ww3 occurs, all driven by his anxiety, practically scared of his own shadow, school have been having lots of problems with it all, then home life, he’s really agitated and violent, more meltdowns this last 8 months than ever before. but things had gotten worse to the point he can’t stand anyone talking now, unless you’re talking to him, if you talk amongst yourself he attacks who ever is talking. His tolerance for anything is basically zero. He can’t even stand the noise you make when you breathe! 😅

Been telling CAMHS for months, but they kept upping the dose saying it will settle when he’s on the correct dosage. I have been close to not managing anymore loads of times. Then they wanted to add fluoxetine into the mix for anxiety which I was happy desperate to try, was just in the process of getting that sorted to start, but a psychiatrist has reviewed everything this week and immediately stopped him from the methylphenidate. Saying this has exaggerated everything (which I’ve been saying all along!)

anyway now trying another. Thank god he’s off that!

wanted to answer honestly as it’s not been the god send we had hoped for.

he tried the XL version a few months ago and that was awful too!

we have swapped to non stimulant type so I’m literally crossing my fingers and everything I have that it works x

@danni0509 thanks so much for your candour. It is exactly what i needed to know because I understand that this is very much an issue for many with ASD. I shall make sure to grill our Dr and make sure there is a prompt exit plan in case of problems. It is senseless to keep at it for months ignoring what you are saying - makes me so upset how CAMHS treats parents TBH

@MissHavershamReturns thanks so much for directing me to the book. It is very clear and manages to be interesting (about a very dry subject indeed!)