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!

Hi, just after some advise really! I'm rather new to this!
My son 10 is autistic and combined ADHD (only diagnosed in November 25), he's a bright boy with a very busy brain. He struggles with emotional regulation massively, triggered by anxiety.
He was started on Concerta XL 18mg for 1 week - we saw an immediate difference it was amazing for him and us he was able to learn things and play with his siblings! Then we stepped up to 27mg which was still good (he doesn't eat a great amount in the day, but makes up for it after) but he felt they were not working so well after a month and went up to 36mg. We only did 3 days on this doses as he was really quite zoned out on these, overfocussed, anxiety through the roof, refusing school again after the Xmas break, not sleeping and just couldn't switch off - he was shattered.
So we were told to go back down to 27mg and although the last few days his sleep has gotten better. He is still refusing school, he's up and ready but the anxiety stops him from going through the door - he cannot name what is making him anxious (this is a long standing issue which completely disappeared the first month on medication!) and school are bending themselves backwards trying to get him in. He gets very upset, fight/flight mode when forced in.
So we have a medication review on Monday, would anyone know of anything to suggest to the clinician? What have you found to be best for your children which might have anxiety alongside?
Thank you xx

Sadly you need to experiment with adhd drugs

why did they start with Concerta do you know

has he tried Medikinet or Elvanse or Equasym at all? There is even Ritalin XL now in UK

Id just keep on trying different ones x

I thought this might be the case, he’s only had concerta so far. No idea why they chose that one, I think they’re said because it is the smoothest & lasts for a long time.
I am just so stressed by it all! I think he is on the verge of specialist school if I cannot get his anxiety under control too.
thanks x

Oh no don’t stress!

always remember it’s all about the right medication , and the right dosage that needs to hit the right spot at the frontal cortex of the brain … so not easy !

we tried lots!! We are on a combination of Atomoxetine and Medikinet and doing ok for now

can you push to try Medikinet , if it doesn’t work then Equasym and then Elvanse ?

Remembwr you need to try different doses for each one, very important you turn this around quickly so they need to be flexible and supportive (consider also Medikinet quick release , also consider trying in empty stomach for 20 mins and observe results ). Never ever give fat as breakfast with any of these meds. Try to give few spoons of whey isolate

don’t stress, be ready with information and options and you can do it xxx

@Runner14 so sorry to hear you are having so much stress. You are definitely doing the right thing seeking help for him and hopefully the right ADHD medication type and level will really help. My ds was also on the verge of specialist as well but is much better now on a stable dose of ADHD medication.

We are on Medikinet. He is also a very anxious boy with Autism and ADHD. He was around your son’s age when we started the medication journey, so if in search of some hope it might help to read back through my posts on the earlier threads to see how medication trial and error was for us.

At one point I spoke with a very experienced private specialist and he said he always prefers to start dc on Concerta if possible, which I found interesting.

We know dc locally who have had good results with sertraline prescribed for anxiety alongside m. It might be worth asking your prescriber what they think about that or any other medications specifically for anxiety.

Hi @Falcon1- wondering if you have any update on how your daughter is doing now? My AuDHD 6 year old DS has been on 1mg for 5 weeks (along with 5mg Amfexa), but thinking of asking to taper off the Intuniv. He’s so emotional, teary, and has terrible insomnia and loss of appetite on the Intuniv. Did your DD settle on the 2mg at all?

She didn’t, no. It was so bad that we decided to come off it. I just don’t think medication is for her - it’s the fourth we’ve tried and all have made things worse 😞what is Amfexa? I’ve not heard of that.

Try Atomoxetine
works very differently x

Really sorry to hear that @Falcon1- it’s so tricky isn’t it. How is she coping with no meds, and which have you tried? We have done Medikinet, Equasym, Guanfacine, Elvanse and Amfexa (Amfexa is the short acting version of Elvanse). Nothing has really helped but he is completely unteachable and will likely need to come out of school if he is unmedicated.
thank you @LoveMyADHD- thinking of asking for this at our review on Friday. I know it sounds silly, but I’m really afraid to try it because I think if it doesn’t work then we are out of options 😔

@needaname19 Sounds like your DS has greater need for medication than my DD. Her biggest issue is emotional dysregulation rather than concentration - although the effort she has to expend during the school day to focus means she is completely drained (and emotional!) once home. She is better without medication than she was on it tbh. We've tried Myflenate, Medikinet, Concerta and Intuniv. None had any positive effect, just all negative. I'm convinced she'd get on better with an anti-depressant - just something to keep her emotions and anxiety at bay. But they won't prescribe it for an 11 year old.

@Falcon1 @needaname19 both your cases reflect my kid’s. Both focus and emotions all over the place

he now on both Atomoxetine and Medikinet and he’s doing good for now thank God. Each one by themselves alone wasn’t enough

Also you might want to consider that some of these meds (stimulant or not) work under very specific circumstances in the stomach/small intestine. If we don’t give on empty stomach for a good half hour , they don’t work for us

@needaname19 pls don’t worry about Atomoxetine , try it you have nothing to lose . It acts on two areas on the brain (norepinephrine and NMDa), the first part might even work instantly within a week; the second bit needs good two months to work.
experimentation with types of food you give it with is needed (100% doesn’t work for us if we give fatty breakfast ). Even the type of protein you give impacts the efficiency

sending hugs x

Hello all - asking for a friend who is at crisis point with her DS16 who is in GCSE year. Recent multi diagnosis including ADHD and anxiety. Prescribed 5mg Medikanet. No effect. Upped to 10mg Medikanet. No effect although in afternoon extreme tiredness - so maybe meds are having an effect? Could it be that Medikanet is not working? I am surprised by low dosage as my DS10 is on 30mg. I know the doctors have to tread cautiously. Perhaps Medikanet is not working. Any thoughts wise Mumsnetters?

Yes the dose seems too low to tell
cant they move up a bit faster so then they switch to another one soon enough?

are they private ?

@Hels20 i think you and @LoveMyADHD are right and it’s hard to tell on such a low dose. Often effects at that level can be quite subtle.

So i had a call about atomoxetine and DS' inattentiveness. I have a cover dr as my currrent one is on leave but the new one seems a bit hesitant. He said atomoxetine was unlikely to do much.

Ds can only have thr min dose of guanfacine and i havent seen any real improvement to keen to try atomoxetine

He's on 15mg of dexamphetamine which is doing wonders for thr hyperactiveness at least

true Atomoxetine didn’t do much for ds focus, very minimal but definitely helped with calmness and emotional regulation and overall exec function

for school he’s on Medikinet too and the combo has been good

Thanks, I think I will push back a bit

It's a bit frustrating as my original dr and I were on the same page and this new one seems a bit on a different page and maybe less experimental. (My current guy is on long term sick so not sure when I can chat to him next).

Im open to going back to methelphenidate at some point as I think now he can swallow capsules it opens up more options.

Im going to email her and ask to try atomoxetine I think, hopefully she will prescribe it.... she is also quite sensitive to DS' weight which my other guy is less so (DS has always been incredibly skinny which I appreciate is not ideal)

Are they private ? You can go somewhere else if they re not great (mine experiments thank God and he’s very responsive if you need his details pls tell me )

do bear in mind though when you start Atomoxetine he cant be on anything else for at least 2-2.5 months

Ahh as in he couldnt keep his dexamphetamine concurrently? The issue is he cant not be on this as he goes ultra hyper without it

Thank you, I will DM you. It's the colleague of amazing dr so I kind of want to stay with the same clinic as im hoping he will be back in a couple of months but im not sure i want to spend money on someone who gives me a lot of pushback!!

No they won’t start with another drug in parallel (regulations ) cause Atomoxetine can have quite few side effects (we didn’t have any tbh) and also it’s quite strong !

the way they do is they observe for first 3ish months and then they introduce low dose stimulants for best results ; within the first 3 months they go up to max dose

we started Atomoxetine early July as soon as school finished cause like you, we couldn’t have him in school without stimulant

if it’s a no no you could wait till summer holiday or perhaps even Easter break? You might even get some calmness within first week (we did !)

i personally would push and push for Atomoxetine , you do pay them and they’re failing you… press on xxx

Also @Mrburnshound Atomoxetine is made by few suppliers ; all were rubbish and literally did nothing for my kid, apart from one , I ll send you details , wouldn’t want to say it here .

it also fixed DS’s circadian rhythm he actually started going to bed with zero issues, impressive to see

Hello, does anyone take any medication combinations for ADHD and OCD? My daughter is currently in titration trialling methylfenidate IR 15mg once daily we hope to switch to extended release tomorrow but her OCD

He does not @mrsmigley we tried methelfenidate but it made him very spaced out.

Good luck for the ER tomorrow!

We take Atomoxetine along side medikinet
Completely sorted out his OCD, there is none now

had discussed before AntiDs for ocd but my consultant is very against them, tried Atomoxetine instead it’s great for this

Hi Everyone, so DS (16) AuDHD has been prescribed: Medikinet XL10mg and Methylphenidate 5mg. It says to take 10mg in morning for 7 days then increase to 20mg in the morning.

This was at Xmas with the goal being to trial it over the holidays. Unfortunately my dad took a turn for the worse and I was caring for him and it just never happened. So, we are now back on this as a priority.

I've also ordered the book! Sorry it has been a really rough 3 months.

Are there any good tips before starting the meds ie/ a really big breakfast (carbs? protein?). How long do the effects usually last?

I've not idea what the Methylphenidate is for -is that a top up if he has a club or a tutor? DH can't remember!

Thanks so much.