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!

Does anyone have any experience of Meflynate XL? My DD (10) has just been prescribed it for the first time and I don't seem to be able to find any information about this particular brand of Methylphenidate. Thank you!

I don't know if it's a tick as such but when we first started on medikinet XL DD would lick her lips constantly! To the point where she had that red ring around them of extremely dry/sore skin. It did pass though after a couple of weeks.

Hello, Newbie here. Hoping for some advice. DS is 7 big, tall and strong for his age. He has weekly sessions with CAHMs trying to unpick trauma/ attachment / neurodiversity but in the meantime things have escalated.Outside school he copes well and he trots into school everyday but we are at the point he is barely lasting 2 hours before I have to pick him up due to violent and disruptive behaviour. School are being amazing but we both feel it’s only a matter of time before someone gets seriously hurt. He clearly want to be in school and with his friends but we can not find the triggers so that makes him so dangerous. They had to clear 2 classrooms yesterday and the day before he nearly impaled himself on an 8 foot fence trying to get back into school when he needs to leave.
we have a planning meeting next week and I am hoping to try some kind of medication to help him but would where do I start reading up?

@Kaffiene I’m so sorry to hear you and ds are going through this. Does he have an ADHD diagnosis? For reading about ADHD medication I really recommend the book mentioned in the OP - parents guide to ADHD medication by Peter Hill.

@AllGonePeteTong1 hello!

My 7yo DS was prescribed it as the first one. My findings:

1. If I broke it opened and emptied it into Nutella he went REALLY zombie ish

1. It was better when he swallowed them whole but still spaced out.

1. Getting onto them he had horrific rebound for 3 weeks.

1. He now takes 2 x 5mg tranquliyn IR which is much better although not perfect.

Btw when are children prescribed amphetamines? I'm wondering if they are worth trying out. How do they behave differently to non amphetamines stimulants?

Actually ds is 6 but almost 7, we went through thr meflynate 6 weeks ago

My dd went from 35kg to 23kg on amphetamines she's on ckncerta and 7 months later still weights 30kg but she at least eats now the comedown is awful it really is

On amphetamines

That’s so bad, I am so sorry to hear this awful situation- I don’t know if I d be able to cope with something like this

tbh how Camhs haven’t given something strong to calm down the rage (while looking for other stuff ) is beyond me . Very irresponsible , this is not just a focus or hyperactivity thing , and is absolutely destroying your poor kids life

I am certain my own psych would be discussing more anxiety meds to cool things down - perhaps you can bring up ? You could use some of the adhd non stimulants for this but they take a while to build up
when is your next appointment

Good luck x

@Treeinthesky sorry to hear that and thanks for the info. ds came down quite badly on mephlinidate at first so sounds like they wouldnt suit him

Maybe they will don't take my experience we are all different and a top up mid way through the day will stop the come down.

My 15 year old tried them and kicked of about a gherkin on her burger on her come down yes a bloody gherkin. My neighbour rang me thinking I was being murdered she was screaming that bad surprised no one rang police it was awful. My bf had 70mg and his comedown is horrible he takes 50mg and 1 dex in the morning and x1 def if needed later on. That's OK for him but 70mg no way. I tried them had 70mg and I spoke my mind and there wasn't any secrets it wasn't good I then had a nervous breakdown. I was OK on 50mg but didn't wanna do anything just focus. Try concerta and a top up for the come down.

Yes my 10 year old had this and was fine. But she was mardy and wouldn't do anything 3 hrs in very focused and didn't wanna break focus. Worked for 7 hours. Had to have a top up mid way through day. She is on 36mg concerta now it's amazing. Ask for concerta ir works 14 hours

Thanks @Treeinthesky We're only day 2. So far, she's had an hour straight after taking them of feeling really tired. Was that your experience? No other discernible difference so far - she still had a meltdown over homework this morning (sigh).

An hour to kick in. Then assess. But most likely dose is to lose as its just a starting dose. Rebound when to low is horrible but assess 1 hour in and for homework u say right in 30 min let's have a look at homework then 25 20 and so on then give 5 min warning then right time for some homework works a treat xx

I'd still ask for concerta chemist4u have them and they deliver xx

My dd was OK on methylnate but the dose of effectiveness took her sparkle. We have her sparkle she eats and she's fab works all day as well xx

I'm starting to give up. DD has a sickness phobia and I think that is what's creating the mental block of being unable to take the tablet.

The medistraw did seem to help, she just took a sip as usual and the juice carried the tablet but when she realised she spat it out.

So frustrating

How big is your tablet?
Im having a lot of sucess with give ds toast triangles, on the middle point i put extra nutella and hide the tablet in there, then it gets swallowed not crunched so much iyswim.

He clocked onto nutella on a spoon but the toast is working well as he has lots of that!

@Treeinthesky i have seen what you mean about the sparkle.

Im speaking to the dr again soon, i might ask for concerta, how big are the IR and XL tablets? Can you crunch them? My delivery method is nutella on toast 😅

It seems like concerta cannot be crushed

Im considering asking to try medikinet or ritalin. ds is using tranquilyn atm but it feels niche and i want him to try the bigger name ones.

Tranqylin is ritalin. I take this as a top up with concerta. Just keep on with methylnate it's a good drug until child can take capsule x

So the bed medication is still medikinet but it's IR (immediate release?) so DD would take one at 8am with breakfast drink (will need to be crushed in) and then one at lunchtime too.

Really hope she manages too as it's frustrating and very expensive to see them go to waste when they could help her!

This is rather handy:

https://www.choiceandmedication.org/awp/generate/handyfactsheetmethylphenidateswitchinguk.pdf

@Mrburnshound we’ve sometimes used tranquilin as our lunchtime top up for ds (our prescription is written so we get whatever immediate release methylphenidate the chemist has in stock) and it worked well. I think it’s one of the biggest selling ones.

It’s interesting about switching and how some meds work so well for some but not others. Medikinet has worked really well for our ds but we’ve never tried other slow releases - he doesn’t do well with change so as we had a med that worked we stuck with it!