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!

Thanks both @Hels20 is there a reason you do long acting in the morning and short in the afternoon? What about sleep? Is it better on short acting?

I think it’s because we were first prescribed long release and so only changed the second med of the day - bizarrely, 5 mg long release had little to no effect on him so we upped to 10 mg for afternoon session.

2 months ago we saw a new doctor and mentioned the awful comedowns for DS9
and so she switched us. So in summary, no real reason.

Thanks @Hels20 so obviously they all know about the awful rebound and know what to suggest. Fingers crossed it helps Ds too

With regard to sleep / we use melatonin. 1mg most nights. If on holiday we might skip it. But my patience was wearing thin when he was taking 2 hours or even longer to fall asleep…

Can i ask if this is due the meds or has he always been like this?
Ds is a great sleeper as in as soon as he hits the pillow he is put but won’t have a lie in.
That was also the reasons we stopped the meds as he really struggled to relax enough to go to bed.
So i have to say he is full on and hard work now without the meds but at least i can rest easy knowing he is sound asleep

Hi @Whereisthesunny - he has been like this for ever (we adopted him at 16 months) - or rather as soon as he was able to climb out of a cot. So for about 3.5 years before we started medicating. Has kept me sane but we do try to give breaks.

Thank you @Hels20 it must have been very tricky for you.
I was trying to work out if sleep is still affected on short acting medication even if it wasn’t an issue before

@Whereisthesunny I bet situation is so tough , it’s likely to make you overanalyse (I am always doing this!!)

all of these medications will impact sleep and eating if they work (if they don’t impact it means medication is likely not working). So I think the concern is “how bad” the side effects are or how long the drug lingers in their system for

it ll be trial and error for sure, even in this group here my Ds has had different reaction to other DSs. you need to have a consultant that ideally covers your worries and suggests new approach or at the very least they respond timely to your feedback.. if you don’t you might have to challenge or change them

my view (based on my own kid’s observations) is your son entering puberty so is likely normal slow release Medikinet won’t be straight forward hence you need good medical help. Also perhaps ask for the non stimulant guarfacine (given daily and takes the edge off) xxx

Gosh - we tried Guarfacine (privately - at great cost). It made no difference - even though we increased dosage twice! So interesting how different meds work for different people!

Yes very expensive, we just transferred to Gp; and you’re spot on it doesn’t work for everyone but definitely worth trying

What type is the Guarfacine? Just wondered if we will look at the short acting ones, would it be medikinet that we are offered. Are they all as good as each other?

Sorry - it was a year ago and I can’t remember the brand we tried. Just remember the cost!

as in was a short or a long release?

@Whereisthesunny Intuniv is the brand for guanfacine (non stimulant , so it’s not long or short release it’s something very different, must be given every evening without a break, acts on nonadrenaline , doesn’t act on dopamine)

short release Medikinet is still stimulant , still acts on dopamine but comes out of the system quicker so potentially less impact

Could I have opinions on Elvanse as a step after medikinet please

Also has anyone tried 2 short acting tablet instead of the slow release? As had quite bad experience with medikinet 8hr and 12hr we are about to trial this before moving on to Elvanse

So the consultant (private) we went to see is really is taking our lead which i’m not sure if it’s good or not but she keeps asking us what we want to do next rather than suggest what might work so i suggested (based on this thread) to try short acting ones to see if rebound is any better.
While she agreed she also said she has no knowledge of rebound issue being better on short acting ones.
All this makes me question her expertise.
I think her suggestion was taking the medikinet 8hr and give him a short acting one to help the rebound but i just feel i don’t want yo medicate the side of the medication instead i would like to try not have such a bad rebound and him just be him after school.
So we were given 10mg medikinet to give to school to administer.
Im already anxious and worry about how this will go.
Next step if this does not work is moving on to Elvanse which apparently has no rebound effect

I am doing 2 short acting, we are not doing long release at all 😊

It’s all trial and error, I am sure it ll be fine give it a week to see how it goes xx

Thanks @LoveMyADHD have you previously tried slow release before moved on to short ones?

Yes I posted previously how bad slow release rebound was for us 😀

@LoveMyADHD do you take a break from the meds at the weekend?
I know that it’s not supposed to be in his system but i found when we stopped the old meds with the bad rebound it took him about a week to get back to ‘normal’ self so worry if i give him a weekend break it’s going to be the same.
So far no bad rebound or mood change but he struggles to wind down to go to bed at the normal time so last night was 11 and was up at 7 so guess it’s not horrendous but is getting later and later.
Are the amazon melatonin gummies any good?

Hi
Im brand new here and have found the thread so helpful. So my 8 year old DS started 10 Mg Medikiet MR yesterday. It had an immediate effect and he was calm for the day.

as it wore off he went back to his normal self but multiplied. Like he had a lot of coffee. Then he just couldn’t sleep last night. Poor thing has never had insomnia.

My questions are:

1. why if the drug has been metabolised out of the body does it cause insomnia?
2. will this be forever? Could his body get used to it and be able to sleep? Or will I have to give him something else to help him sleep?

Thanks so much

Hi @Thanksforthat we are fairly new here. My son 12 started medication a couple of month ago.
Our experience so far with medikinet XL (8 hour one) was quite negative.
He had a fairly severe rebound effect and suffered for a long time after the medication wore off. Very emotional and aggressive and struggle to wind down for sleep.
After a month of taking it we stopped as the bads outweighed the good.
A few mums here recommended trying the short acting medication 4hr one despite our consultant not being aware that the side effects can be less severe with short acting, she agreed to try it and can definitely see a lot less of an issue after it’s worn off.
The appetite is unfortunately still affected but no emotional outbursts any more.
Sorry i can’t answer your questions scientifically but unfortunately those are the common side effects that can happen.
We don’t have too much of a sleeping issue on the short acting meds but i know drs suggest taking some melatonin to help with it.
Im sure someone else will be along to give a bit more info. Good luck

Hi @Thanksforthat and welcome!
My DS started on medikinet 10mg xl at age 9.
He also experienced insomnia immediately after never having had sleep issues. It settled a little after the first night or so but not enough. We asked for him to be prescribed melatonin and that did the trick.
He's currently on 25mg of melatonin and 4mg melatonin, it took a few months to find the right dose of both.

At the moment we give him medication breaks at weekends and holidays, he only had the melatonin on days he has medikinet. And he sleeps fine.

For us the clear benefits of medikinet at school outweighed the sleep issue.

Once other things was that any time he increased dose of medikinet, the insomnia came back with a vengeance, so we tapered dose increases in slowly over a few days.