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!

@Hels20 sorry things are so hard. It's not been easy here either and we aren't away!

My DS struggles with overwhelm in busy and new places. Honestly, he'd find those places really really difficult and we have come to the realization that for us as a family, theme parks holidays are probably always going to be off the cards. My DS zones out and gets all antsy, needing to know what's going on every second of the day.

We had him assessed for autism, partly because of these behaviours. He didn't reach the threshold for diagnosis but the psychiatrist who saw him explained that when he gets overwhelmed he will go into fight, flight or freeze. Our DS doesn't fight, but he does freeze and sometimes he will 'fly'. She said its the brains way of basically shutting down and saying 'i can't take any more stimulus'. Knowing this has really helped me understand him better.

It might be that when he's in a new different place with a lot to take in, his iPad is basically his regulator as he can use this to essentially block out all the new things and escape to the familiar.

That would be my take on it, but obvs I have no medical experience.

@Hels20 we are also away although just in the UK so not long haul and ds is also struggling. I think for my ds that’s the autism side of his AuDHD. Sending love and just one idea. Could you say offer 45 mins rides then 30 min break at a coffee stop with the iPad etc?

Thanks both for your messages - I get so judged by friends for the amount of iPad time. I hadn’t thought that DS might just be shutting down because of sensory overload. He has asked if we can hire a stroller for him - he is far too old but would fit in one - and that way he can hide about so I think I might. My eldest DS is autistic and adopted but really loving this place - so I want him to have a good time. Going to try the stroller (who cares?) and there is meant to be a huge climbing frame thing that I think DS8 will enjoy and we are going super early (at 7am as we have priority access as staying in a hotel on site) and hopefully it will be less overwhelming. Fingers crossed.

Y y @Hels20 this sounds like a very good plan. Good luck! I find my inspiration of solving issues comes mostly when I ignore all the siren voices who know nothing about SEN. I still listen to them far too often but am also starting to learn to tune them out sometimes

Thanks @MissHavershamReturns - we hired the stroller and it has made a huge difference. He can just tune out. I also think he sometimes likes being treated like a baby (probably due to adoption) so he is happy and my other son is happy too. And we can spend time as a family. I really hadn’t thought of him being overwhelmed - but I think he might have been.

Waving hello 👋

My DS (9) was diagnosed with ASD at 3 and severe ADHD this year.

Started him in 10mcg of Medikinet XL just before Christmas and doing the whole titration process to get the dose right. Moving him up to 20 mcg when he goes back to school.

If I'm totally honest, haven't seen a huge impact on DS's symptoms so I'm guessing current dose it too low. Still getting lots of anger and struggling to get him to focus. Hoping desperately that we see an improvement with a bigger dose.

Only side effect we've seen so far is worse sleep. Does anyone here have any experience of using melatonin to help counteract that?

@dressedforcomfort welcome to the thread! I felt so stressed when we started titration and nothing much happened at 10mg. I would definitely hang on in there as for us 20 was much better and 30 much still.

We don’t use melatonin but I know dc locally where parents say it has made a huge difference and there are definitely people on here who use it and who will hopefully reply.

Hi @dressedforcomfort and welcome!

We use melatonin for sleep and it's been absolutely life saving for us. Prior to starting, DS would take 2hrs to fall asleep and needed a lengthy bedtime routine to help him switch off. Since melatonin he is asleep by 8:15 every night. It's made a huge difference to him as he's essentially getting 2 hours extra sleep a night.

We buy ours online from a place recommend by our private pediatrician. DS has 3mg every night. We find it works brilliantly for 6 weeks, but then it stops working. When it stops we have a break for 2/3 nights and then it works again! I think this is quite common. We find when DS isn't medicated, he needs it much less. When he is medicated, he couldn't manage without it and has actually managed several all nighters 🫠.

Would you mind sharing with me where you buy it online?

Hey @dressedforcomfort!!! We use 2mg of melatonin as well. My boy would spend 2hrs+ every night up and down the stairs, tearing about in his room and then wake up at 4am. Now I give him his meds at 1900 before his bath, and by 1945 he's asleep. He tells me that his brain finally can switch off. Took me a long time to consider him having it however.

We haven't noticed any time of it not working yet, and we are on week 7.

Hi and welcome to the best place on mumsnet! My DS (6) commenced on 10mg back in July and it worked really well, and then worn off. We went up to 20mg and it didn't work for us. One thing I've learned about this thread is that all our kids are different and medication works in different ways! My DS is now on Xenidate 18mg at 0700, and melatonin at bedtime. We can have a 5mg top up at 1300 if he wants.

Hope everyone is okay. DS is being an angel pie so far this holiday, and states he feels a lot happier about the possibility of being home schooled for a bit. I explained to him that things might take a while and he may return but on different adjustments etc but we will take baby steps!

Thank you all for your kind words of support. It really is helpful to have other mums to speak to about this. And it does give me hope that melatonin will help us iron out the sleep issues. (Fortunately DS doesn't appear to have had any other side effects so far - still eating like a horse.)

Will watch this space and see what happens in Jan when we bump up to 20mcg.

Hi @dressedforcomfort my DS is 10 and on 30mg medikinet, plus 4mg melatonin. He had no sleep issues before starting on medikinet but the meds really hit his sleep hard. The melatonin more or less keeps sleep ok.

Currently on a break from all meds for the holiday, and good to see that he's sleeping ok.

We got him Lego for Christmas, I hadn't really thought about how he'd be unmedicated while trying to assemble it... But we've managed to get some assembled, as long as one of us reads the instructions, finds the bits he needs, hands them to him, and points at the picture to remind him what he's meant to be doing ...

@rhubarb84 I laughed out loud reading your description of the Lego because it's EXACTLY the same here 🤣🫠. Medicated he would build a model in a day, unmedicated, he's managed about 10 mins at a time. I had forgotten just how bloody fidgety and tappy he was. He has taken to tapping/beating his chest like a gorilla.

He has however been eating absolutely shed loads and that's great.

We buy our melatonin from Biovea. They deliver quickly. We get the 3mg fast dissolve ones. They are a bit like those tiny refreshers sweets! My youngest son also now has melatonin occasionally and we get him the gummies that are 0.5g and he only has half of one. Its a tiny dose but he finds it helps if he's struggling to sleep! He probably has one every few weeks. DS has it daily.

Oh my reply has been blocked... Maybe MNHQ will just delete the website I mentioned for the melatonin... Should have thought about that.

Feel free to pm me if you need me for anything at all.....

Will do when I'm on my desktop tonight. So grateful as fast dissolve would be fab.

DS had horrible nightmares last night but slept in until 0730. Every raincloud and all that. Here's to Friday everyone! Remember, we are amazing and we are doing the best we can!

Ok so would be really keen to hear about other people's experiences of medication breaks. We've never had one before for more than a day but DS has been off his meds since finishing school. He took them Christmas Day but otherwise he's been off them.

The first day he was off them he was literally richocheting off the walls. Tapping EVERYTHING and using lots of silly repeated phrases. Now we are a few days in, he's loads better. Tapping a lot but far less and almost no silly phrases being repeated. Is this usual? Does it take a few days to settle back to 'normal' after being on meds constantly or is this just me getting used to it?

It's been an absolute delight (and a break from me) not having to worry about him eating and I think we'll do regular meds breaks from here on in, provided DS wants to. I'm also hoping it will help him appreciate what his meds do help him with and the challenges he faces when he's med free. We had a really frank conversation about this on day 1 and he really seems to have taken it onboard.

@WesternEasterner i could literally have written your post as this is how our med breaks go! We are now 7 days into the med break and things are much much calmer.

@AndrewGarfieldsLaptop a very good Festive Friday reminder! Agree we all rock!

That's so interesting!! I thought we'd try doing a weekend meds break but I'm now wondering if holidays are the way to go, or the long bank holiday weekends when we have them! I still didn't find he ate much on his first day off them so there wouldn't be much point in him being off them if he's not going to eat. But tonight he ate 12 meatballs. I'm sure you can relate to how happy I am right now!!

How often do you guys do meds breaks and why? DS6 will ask for his medication and says "I'm so just so fizzy without it"

@AndrewGarfieldsLaptop - we do regular breaks every school holiday - although will medicate if doing something like a museum or a flight. He has melatonin every night and we do try to give him a break every other weekend (he is on 1mg and we don’t want to up it). We often also give him a break at the weekends as so worried about his eating.

We aren't currently doing them and they haven't been recommended. I am loath to try because we always have such a struggle settling on them maybe that's just us.

Interestingly, we're noticing that DS is still eating reeeaaalllyyyy slowly even while off meds. Not sure what's going on. Has he just got out of the habit of eating quickly? Is he just too distracted? No idea, but realising that for him it's a bit more complicated than the meds suppressing appetite on the day.
To be fair, his sister is also eating slowly too.

He's pretty mellow and otherwise fine, but we haven't exactly demanded much of him! The main annoyance is he's interrupting a lot.

@AndrewGarfieldsLaptop we've always said we'd be led by DS. If mine wanted his during the meds break, I'd absolutely let him. It's so wonderful when they can see how the meds help them. Mine chose to have his on Christmas Day. Honestly we are only doing it for weight gain. I can see some of his friends starting the early stages of puberty (he's 9) and DS is visibly looking younger now.

We have found with meds breaks we can also stop the melatonin which is bizarre because before meds his sleep was awful!

@HauntedPencil my paed didn't recommend them either, we are doing it solely for weight gain. If weight is good, I'd definitely crack on!!!

@rhubarb84 yes we have this. I think DS's stomach has shrunk or he just is out the habit. When he's on his meds he never gets hungry, even when they wear off. It's taken a good few days for his appetite to return but he still won't snack unless I give him something. Before he'd have been clamouring for a snack from 10am!!!! Yesterday was the first time he announced he was REALLY hungry and had to have a starter before dinner. That used to be a daily occurrence!

HAPPY NEW YEAR everyone! Hope we all have an incredible 2024!

Just wanted to share a little success we’ve had on our med break this time. We’ve always had huge issues with mood swings which cause ds real distress as well as headaches, tiredness and anxiety when coming off in school holidays. This time we did it slightly differently and ended up reducing over a few days rather than a sharp stop.

I had actually forgotten to give the 10 mg immediate release methylphenidate lunchtime top up for the Saturday and Sunday as final Xmas shopping was a major distraction and we were out of our usual routine. Total dose on those days was 30 not 40. I then had a day where I decided since that had happened I would only give the top up, so only 10 mg. The next day I gave no meds.

This slower reduction going into the break of 40, 30, 30, 10, 0 seems to have really really helped ds with mood on coming off the meds and we haven’t had any headaches, long tearful spells or major anger outbursts. I’m not sure if doing this again is a good idea or not, but will ask pharmacist next time I see her to check on whether there’s any reason not to do this in future. Has anyone else ever asked about or done a slowly weaning off meds for a break? Any downsides of doing this?

I suppose it means he can’t have as many days completely off as I could have stopped the meds on the Saturday doing it the normal way.