Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread for us to support and encourage each other in Medication journeys for our children, right from considering medication for your dc and the earliest days of trying the medication for the first time. Lots of information here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

All information on here is from a parent experience perspective. I am definitely not an hcp, just a mum who is happy to share my family’s ultimately positive experience with the medication, through ups and downs. Others posting here are also just doing so as parent ‘experts by experience’.

That said, the parent knowledge on here is phenomenal and there is help on the benefits of the medication, management of potential side effects, as well as practical tips on how to make taking the medication more straightforward, taking med breaks etc.

This is a really good place to read about recent medication journeys from the supportive crowd on the thread.

A really good starting place for reading about the range of drugs available and what they do from a Great Ormond Street specialist with over 40 years of experience prescribing the medication is the Parents’ Guide to ADHD Medicines, by Professor Peter Hill, which is available on Amazon. A really accessible, honest and overall reassuring read, which helped me when I was very doubtful back at the start.

The tips on diet from this NHS factsheet on managing reduced appetite in children on the meds are also really useful www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/ My ds was already very skinny when we started the meds, so with hindsight it would have been good to feed him up a bit so there was a bit of a buffer when he became a bit less hungry.

As parents of children with special needs we can sometimes need a bit of support ourselves and I found this book very practical and reassuring on self-care and how to manage SN parenting. The book I wish I had had in the earliest days of having an ND child: Joanna Griffin, ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’.

This is thread 3 and thread 2 can be found here: https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others. Thread 1 can be found here: www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38. I’ve posted my path with my dc from starting meds through to the end of titration here, as have many knowledgeable mumsnetters, so these are good places to read back to see a range of ways that meds journeys can unfold.

I’m sure thread 3 will be the best yet, so welcome one and all!

it depends on the liver metabolism, for my kid it would last 5-6 hours but the label says 8 hours

it also depends what the kid eats, they really must have lots and lots of protein but low fat (high fat makes Medikinet release early you don’t want that), so realistically you do need to give protein powder in the morning

low percentage at the start (like concerta) essentially means that it works better towards the afternoon but again it is trial and error

one more thing you can do to get the rebound out of the way quicker is to give vitamin C as soon as she comes home, it ll help flush the drug out quicker

x

She eats very little protein so that’s interesting.

So just some fresh orange house may help with prolonged rebound?

what’s so good about Elvanse?

Needs more than fresh orange juice im afraid like a Berrocca in a bit of water but if tricky to give 2-3 cups of orange juice is fine

tomorrow morning could you give couple of boiled eggs and some ham or milk with dark chocolate stirred in - should have quite a bit of protein (perhaps feed her in front of tv etc)

ideally you need around 30 grams (DS takes 50 grams each morning half via pea or peanut protein powder )

methylphenidate (Medikinet, concerta) maintains whatever dopamine your DD has in her brain , by making the dopamine transporter (which clears dopamine) not work much. It’s for your DD to make that dopamine mainly by eating protein

elvanse works the same but also makes dopamine on its own

Elvanse is much more expensive for NHS as well , so Medikinet is first point of call

x

@lovemyadhd yes I think he's on the lowest dose possible, I think the dr wants to stick with short acting for now because when we have the mephlinidate the long acting one turned him into a zombie whereas the short acting one worked better.

DH thinks this is the best one so far so hoping the school agree 🙏🙏

I've tried to think how I can give him protein in the mornings, he cant have dairy so has oat milk in things and Nutella (he can deal with a small amount),

So, we had an appointment with the consultant today and they have reduced the Medikinet XL from 30mg to 20mg but added a 5mg instant release for after school. Hopefully this will help with the rebound… fingers crossed.

You can just add nuts to a food processor with some dates, cocoa, sugar, oats and vegan milk ; if you leave in fridge then you make yummy brownie

tiktok has lots of ideas for protein breakfasts x

Fingers crossed keep us updated x

Thanks, i will look into that for high protein bfasts. @lovemyadhd

All good so far, will ask the school for their views next week as this weel they've been doing fun stuff/no sit down lessons as it's show week. He said his lines nicely in the show, although is a very un-cordinated dancer 😂

My 14 year old daughter has AHD and just started on Mefylnate XL 10mg on Monday.
She’s very tired, and is still in bed. She got up at 8.30am, had breakfast and took her medication but went back to bed. This seems strange given it’s a stimulant (but I read the insert that says it’s a side effect). I’d really appreciate some advice about treatment and side effects. Are the side effects likely to last a couple of weeks? Any advice or tips on managing this period and anything to look out for would be greatly appreciated as I’m a complete novice on ADHD medication.

Hi @Jedstre we never had this on methylphenidate I am afraid

also “generally speaking” with stimulants the side effects don’t subside, you either have them or you’re not - apart from some odd ones that truly last just couple of weeks, I.e my kid had tics which just disappeared in few days

but it does depend on the kid so it’s all a big experiment I’m afraid

how old is she, 10mg seems low

thanks for replying @LoveMyADHD. Are all methylphenidate preparations the same? Seems like there’s so many brands available. She’s 14 around 50kg. 10mg for two weeks then up to 20mg. Happy to go slow. If anyone else has any experience with the drug please? I’m working my way through the threads.

some preparations deliver the drug differently (50% at the beginning as opposed 30% or 22%) , these are Medikinet, Equasym, concerta respectively but I think you’re under a Generic brand

if I were you I’d ask specifically for one of the above brands more reliable

also go through this thread if you can there is lots of experience/advice

10mg for two weeks specifically for this age is really slow, usually they move quicker than that (are you CAhms or private)

Looks generic (Flynn pharma) I wonder if she’s getting a ‘hit’ first thing. She’s up and about now but seems to affect her soon after first taking.

We are on a right to choose pathway, Initial diagnosis by them and now on treatment pathway.

To be super honest most kids on this board are around 30mg at this age (a few on 20mg perhaps but rare)

if you waste more time on this dose it ll be a shame… I’d ask for increase as I’m assuming you haven’t seen any positives apart from that odd side effect

She just started on Monday. First ever drug she’s had. Will be uptitrating soon then review at a month.

Fingers crossed it works out for you!
Hope she’s doing better by now x

Awaiting the school's report but seems thr best medication so far.

Im going to ask of the afternoon dose can be higher as I fine him a bit irritable in the evenings/I can tell the meds have worn off and he needs to come out and about with me as I drop people at activities.

Massive well done @Mrburnshound extremely happy for you

agreed this one and Elvanse is different level!!!

Hi!
I found this thread 3 weeks ago just before my DS started this journey and the thread was SO helpful.He’s on 10 mg methylphenidate- Medikinet. He’s just turned 11. Hugely anxious, diagnosed ASC and ADHD, I suspect PDA. We were reluctant to try Medication due to his extreme anxiety and as he’s currently underweight, but had another mental health crisis 6 weeks ago so we have decided to give it a go.
He is definitely experiencing loss of appetite- we are trying to get more protein in at breakfast but struggling. Can I please have your best protein rich breakfasts? He does have a smoothie everyday so thinking of adding protein powder if anyone can recommend one? We are just about to move up to 20 mg tomorrow. Thank you ☺️

@Holiday2018 these are the ones we use

You basically need something with 20gr protein per scoop and with no vitamin c x

@LoveMyADHD Thank you so much for that. Is plant/ nut based better than whey ones?
Thank you

For us it works more cause whey protein doesn’t dissolve properly in hot milk (I heat up to break down the milk allergens)… also for us milk proteins where not as effective but this is just opinion not fact 🙂

It’s interesting the milk whey didn’t work for you guys @LoveMyADHD. We found it didn’t agree with our ds’s delicate stomach and after a bit of trial and error realised it was responsible for all the stomach upsets and we phased it out.

@Holiday2018 I’m so glad the thread has helped you. We were very reluctant to start meds with our ds as well, which you will have seen if you have read back! But it has been absolutely marvellous for him. He is now doing much better in secondary than we ever thought possible. I really hope the same will be true for your ds. Please do keep us posted.

There is a lot of “big” breakfast info on the threads in various points and lots of great ideas including from the very supportive @LoveMyADHD. I will try to find some links for you in a second.

Just reposting a post from earlier in case it helps @Holiday2018 :

”It might be worth looking back at thread 2 of these threads as we had huge problems with ds and weight from Feb 2023 onwards. What will work will be different for each child but lots of people shared really useful tips and I posted about our experiments and ultimate success with weight.

In the end we did work out a regime that worked to regain weight but it was quite a lot of effort - we found we had to give ds 500 cals for breakfast every morning, with high protein and high cal foods, like bacon, sausages, eggs plus toast etc to fill him up. Hot chocolate drinks were great for weight gain with full milk, also full fat yoghurt. Lunch he was not able to eat much and dinner he could only eat a bit. We ended up having to make a further full meal at about 8 pm of another 500 cals. Again high protein and high cal.

In the early days the clinic advised us to shelve healthy eating for a bit and give lots of crisps, cake, biscuits, jam sandwiches etc. we did this initially but as the weight started to come on we weaned ds off those foods and onto more healthy options like oatcakes with peanut butter.“