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!

One of the reasons is urine acidity… the more acidic it is , the quicker the med is excreted

that’s why there is a hype about alkalinised diet etc
x

I spoke to the dr today and he said he's going to add either guanfacine or atomoxine - he's going to read some literature/have a think and let me know.

The main barrier to atomoxine is that DS can currently omly swallow tablets but hasnt got capsule swallowing achieved yet (which came up when we discussed elevanse). So sticking with dexamphetmine at the current dose and adding a non stimulant.

Well done @Mrburnshound that’s great to hear !

Atomoxetine capsules are quite small it ll be fine!

Hope he reads his literature pretty soon ! 😎

Thanks! Do you have a picture of the atomoxetine capsules by any chance?

Yes sure.. left one atomoxetine

the one on the right is standard ibuprofen , it gives you an idea of how small Atomoxetine it is x

I think MN reviewing pics should appear shortly x

Thank you so much! That's very useful xx

We are starting guanfacine when we get it! Keen to see how any changes (keeping dexamphetmine also)

ds HATES having his blood pressure taken. I have promised to keep trying but I don't think we will ever get there 😬

@Mrburnshound - we were prescribed that - in an attempt to come off Medikanet which is a bit peaks and troughs for us. For some reason it had zero effect - and DS’s behaviour deteriorated so we went back to Medikanet.

good luck and please report back!

@Mrburnshound good luck! Hope it works out!

Hi
Those on Medikanet XL, what strength is your child on? Our son is 9 and is on 10mg. Thank you.

@CastleSky my ds was 10 at the start of titration (very slim build) and final stable dose was 30 medikinet XL. Has your ds been on it for a while now?

@Mrburnshound best of luck with the new medication and please keep us posted!

Only a couple of months. Finding he’s very emotional in the evenings.

Does he have a lunchtime top up @CastleSky

No he doesn’t. We chose this one as it was meant to last around 8 hours:/

We top up on Medikinet XL to stop the emotional reactivity - it smooths off the crash out of the blood stream that causes the reactivity. We give a 10 mg immediate release lunchtime top up. Worth explaining to your prescriber what you are seeing and asking if topping up might help

@CastleSky - 20mg in morning and 10 mg at lunchtime and sometimes I give him an extra 10 mg if we have to go somewhere in evening….

@Hels20 could you explain the time you do the evening 10? I’m wondering about doing this! Does it impact sleep?

Hi @MissHavershamReturns - we only do it occasionally when we need to be able to control our son - so we give it very occasionally at 4pm or 4.30. Sometimes we give at 3pm. It doesn’t affect sleep but we do use melatonin.

Hi all, just wondering if anyone has any thoughts before I have another med review with ADHD 360 tomorrow! So my DS has recently switched to Elvanse, after a year on Medikinet IR. He did 2 weeks at 20mg Elvanse, and has been on 30mg for a week. During this time, he’s been super emotional and disregulated at school and very defiant. Sleep and appetite have also been non existent. Do you think I should give it more time to see if this settles, or try and switch? Not sure whether to give a non stimulant a try, but concerned about having to wait for it to build up in his system. Why is this so hard?!? ASD in the mix too, which complicates things further :-(

Just our experience, we are new to all
of this. My DS has also switched from Medikinet to Elvanse, he felt quite low on medikinet and so far has not had those side effects on Elvanse but he hasn’t been sleeping especially well, difficulty getting to sleep and waking in the night. He is 17 so teenage late nights might be playing a part. Prescribing Dr has said to try for 2 weeks during which time side effects such as headaches should subside. He didn’t see the unpleasant side effects of medikinet subside in that time and I slightly wish I’d asked to switch sooner as I feel that we have lost 3 months at a crucial time (run up to alevel mocks). It does seem that everyone responds differently so the titration is tricky. I hope you get some other more experienced responses that help.

We gave Elvanse a chance on two separate occasions (on its and later on with Atomoxetine )

when it works its fantastic but.. it brought in a lot of aggression sadly. His emotions were a mess he got so argumentative it was truly shocking to see. Elvanse when on its own we went up to 50mg, we gave up due to the above

when tried again with Atomoxetine we went up to 30 but it became unbearable tbh

personally I’d try something different alongside Atomoxetine perhaps

Thank you @spring124- titration is just so difficult isn’t it. My son seemed to be ‘low’ on Medikinet - his personality just disappeared. He’s minimally verbal, so is unable to tell us how he feels which makes things so tricky. Hope things settle for your son too.

We tried Elvanense. Son really struggled with it. So after 3 weeks we gave up and went back to Medikanet. None of these meds are perfect - some work for others, some don’t work. In my experience (4 years now) it is all a bit trial and error.