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

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of 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. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

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.

This is thread 2 and 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 it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

Ah that sounds really tough. I really hope things continue to improve on that front. 6 was a tough age for us, very quick to hit and very low on controlling impulses etc.

Hitting was at its worst last year, but I think it's decreased now as DS usually plays alone :-(

Hi everyone, sorry I posted on the old thread so screenshot

I will have a read through all your posts but happy to join this thread for support of each other, advice and venting!

As in my screenshot above you can see I have a 7 year old girl struggling at school. She was getting so far behind we had a private ADHD assessment. It came back as inattentive ADD, also I was told unofficially that she is ASD..I've gone through my GP for this. She also has a stutter probably because of low self esteem and struggling in class (KS1 results were not good)

I also have a 9 year old with ASD, dyspraxia and an EHCP

Chewing!!! My son was the same, it's just stopped!

That's interesting to hear about the meds stopping the chewing! Could be a good sign they are working! Glad it helped your son stop. Sorry don't know how to answer directly yet!

Hi everyone. How are we all doing? Our team have agreed for DA meds to go from 10mg > 20mg. How did everyone else find this?

What meds are they @AndrewGarfieldsLaptop ? My son went up 5 mg at a time and was fine apart from one increase which left him feeling rough and not himself for a couple of days. He had medikinet xl . He now has equasym xl due to a supply ussue with medikinet.

We are on holiday this week at the coast. I can really see the difference here! My boy is able to enjoy so much more! And I don't feel like I have to be hovering so much! He has been walking instead of using the buggy, fed the donkeys calmly and sat for every meal. Amazing!

I just realised I did a name change! It's Quinn here. Thanks Nurse P, we are on medikinet, and I've requested to go up to 20mg.

DS has improved loads, but we are still struggling with sensory overload. We went to a themepark this morning (we live opposite one!) and today was too much for him to handle.

Realised I haven't updated in ages! We've managed to get the Medikinet Retard (XL there I think) so can open the capsules and take with Nutella.
So that's fine, except they've started him on 5mg which is doing nothing (but no side effects so that's good). And the biggest struggle is getting him up in the mornings to take it, as there's no effect there's no incentive iyswim 🫣
Anyway we've a review next week so hopefully will up the dose and eventually end up with a level that works.
I realise I'm sounding impatient- and I am I guess. It feels like it's taken so long to get to this point I just want it to be sorted. But I do understand about increasing slowly obviously I don't actually want to rush things. Just feeling frustrated and hot and bothered which doesn't help!

We had a very sleepless night going from 10 to 20mg, but it settled down. 20mg still didn't do masses for symptoms (although maybe it has and I've just forgotten what he used to be like!) and we ended up starting melatonin too to help with sleep.
We're about to go up to 30mg and have been given a week's prescription of 25mg so that we can taper the dose up gently.

Our paediatrics said to us @AndrewGarfieldsLaptop that with medikinet you don’t usually see as big a reaction when you go up from 10 to 20 as you do when you start the meds and that you wouldn’t expect to see an enormous increase in side effects. This did turn out to be true for us and I hope that’s true for you too!

@rhubarb84 keep us posted on how it goes at 30. For us 30 seemed to be the magic number for really reducing the impulsive behaviour.

@ColonelSpondleClagnut I’m so glad you are getting on with the slow-acting medikinet. It is indeed Medikinet XL here. I can appreciate 5 seems very low to start but maybe having no symptoms will encourage continuing to take and then you can just proceed up to a level where it starts to hopefully work - fingers crossed for you. It sounds as though you are likely to go up next week.

@NurseP I’m so glad you are seeing such an improvement on holiday and it’s just lovely when you see them being able to enjoy themselves more isn’t it

How long have you been on the equasym now and did you notice any difference switching across? Do you mind me asking what the supply issue was? We are on Medikinet still and it sounds like it would be useful to know!

This is so reassuring to hear... our impulsive behaviour has definitely reduced!

Asked for the script yesterday and they have written the dose wrong and his name wrong, so I'm hoping I don't have to pay for a prescription again!

Thank you - yes you're right about no side effects being a good thing! I am concerned about him losing his appetite, although he eats so little at lunch anyway it might not actually affect him.

It's good to hear how everyone else is getting on, although my DS seems so much older at 13 - did anyone else's child start meds as a teenager?

Hello! My DD was diagnosed ASD after a massive MH breakdown that lasted years and involved suicide attempts and self-harm. She got her ASD diagnosis in 2021 and her ADHD diagnosis earlier this year when she was 16 (17 now). She was started on Xaggatin XL but had terrible side effects (diarrhea, violent vomiting, the shakes, sweating). Her psychiatrist said this was a really unusual side effect and after a medical review it was decided by her care team that it was most probably serotonin syndrome triggered by an interaction with the Sertraline she was on. Meanwhile she was sitting her Highers (Scotland). So after exams she very slowly came off 175mg of Sertraline and now is on her first day of Medikinet 2.5mg! She is being really closely monitored for side effects and dose slowly raised if all clear. I so hope this works for her, she has had such a rough few years and lucky to be alive. I know medication is not the answer to everything but I hope this helps her stay mentally stable 🤞. This thread is really nice and supportive!

Hi everyone. I hope we are all having a good weekend. I'm sorry to barge in with MORE questions.

We increased to 20mg a few days ago and boy oh boy we have had a rough few days. Today we went into the city and we needed a lot of redirection, it felt like we had gone a few steps back. Can someone reassure me that the first few days on 20mg being rocky are normal?

Also DS's doctor has prescribed him a 5mg dose to take after school at 3pm. I said to him that DS gets the "zoomies" and is tearing about the house from 4pm, and it feels like he's making up for lost time. He's prescribed 5mg to tide him over but I'm not so sure... anyone else on this?

@AndrewGarfieldsLaptop we have a top up and I think a few on here do, we are on a 10 mg top up at lunchtime. It’s really helped my ds.

Someone wise on here said to me try not to overthink the early days of each increase. IME you don’t see the stabilised effect for a few weeks and the early days of each change can be a bit rocky here. I hope that helps!

@Hapagirl48 welcome to the thread and I’m really sorry to hear about your dd’s mh difficulties. My ds is also very vulnerable and just about to start secondary. Hopefully someone on here with an older teen will reply soon!

@Hapagirl48 my ds’s mh has really improved with medikinet. I really hope this helps your dd too.

Thanks for the support! We’re hoping that meds help with her very risky and impulsive behaviours. She seems okay so far side effects wise (the dr said the dose was so low we probably wouldn’t notice a difference in her adhd symptoms) but complaining of joint pain. Has anyone else experienced this?

Thank you for this as I've threatened to throw him in the skip as he's woken up his baby sister 🤬🤬🤬🤬