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!

@krobhix20 we found on the initial dose we saw improvement with fewer meltdowns and better concentration but ds was still hyper. That didn’t reduce until his dose went up. Hang on in there!

We also still get manic moments and absolutely ridiculous days even on meds. Still better than he would be but he has his off days. I placate myself by saying this would happen either way. It wouldn't be normal for them to be completely the same every day and that's true for ND and non ND children/people.

well i am so glad today is over. it was absolutely awful. we averaged a massive meltdown each hour. he was triggered by the smallest things. he meant to write a "G" but i came out like a 6. things like that. very explosive and aggressive. today was the first day on meds that he wasn't allowed to just veg out and watch tv so there may be side affects we just weren't seeing. We are going to try a half day at school tomorrow and see how he does. the weekend felt hopeful today feels horrific. but the one hopeful thing about today is....it's over. that means we are one day closer to finding a solution.

@krobhix20 do you mind me asking when this started? Was the anger particularly bad after lunch?

Just to explain why I am asking, I really do sympathise because mine was similar. It turned out the major anger was afternoon and the paed thought it was a med crash with a big reaction to the medication tailing off in the body. Once we added a small lunchtime top up the anger stopped

Sadly it was pretty much all day yesterday. He went to school today for half day and they were pleased with him although I haven't gotten a full report yet. He still seems incredibly hyper even more than usual.

We've been given permission to up his dosage tomorrow which I'm guessing may give us more info about efficacy or side effects.

@krobhix20 understood about all day and I’m glad school went ok today. I got wise advice on thread 1 to not take the first week too much to heart and even the second week, as much of what you see can settle. For example, my ds had awful headaches in the first week or so, but those stopped.

Are you going up to 10 mg tomorrow?

Yikes! Yesterday afternoon was terrible so maybe we are seeing the effects of a bad crash. We now have a smashed tv . He felt so badly about smashing it that it turned into a 2 hour meltdown. We upped the dosage today and are preparing for what might happen as a result of that.

School did say that he was really hyper but did well. Curious to what the next steps might be if this continues.

Really hope things settle down @krobhix20.

Just popping on to ask has anyone got any experience of Phenergan? Consultant has suggested as melatonin isn't doing much. I was given a script but told might be cheaper to buy. I've looked it up but it sounds slightly scary!

@krobhix20 I’m so sorry to hear these early days are being so rocky for you. I’m sure you have told the Paediatrician about the crash like symptoms and I guess they may suggest topping up if things continue. Hopefully the side effects of starting the meds will ease soon.

@HauntedPencil no experience of phenergan I’m sorry to say, but I think you are doing the right thing by pushing to try to crack sleep. Hopefully someone else will have experience of this med.

We never tried melatonin and they didn’t seem to suggest it, but sleep can be a big issue here. I think the reason they didn’t suggest for us is that they felt the sleep onset issue wasn’t consistent and so was more anxiety driven.

We have melatonin, not phernagan BUT melatonin literally changed our lives and I would say it's impacted DS almost as much as the meds have.

Before melatonin we had an incredibly rigid 2 hour bedtime routine that involved going upstairs at 6 and lights off at 8. Then he would finally drop off about 90 mins to 2 hours later on a good night. 3 on a bad. If we went to bed any later, he would still take just as long to get to sleep. If we didn't take 2+ hours to relax and wind down he often wouldn't sleep till gone 1am. It was so difficult and quite limiting too as he got older. We couldn't do clubs that finished at 6 so he couldn't go to cubs when he aged out of beavers. We had to say no to a lot. He was getting up at 6 and so getting around 7/8 hours sleep and it wasn't enough. He was perpetually exhausted and so were we.

With melatonin, he takes it at 7:30 and he's asleep by 8:15. He's getting 10 hours sleep and wow it's changed our lives. I had NO idea how much sleep was impacting us all. We started melatonin before we were able to get meds and it made a huge difference alone. We no longer have to be in at 6pm. He was able to move to cubs now which doesn't finish till 8 and he is asleep by 8:45. The idea of doing any activity and then just drop off to sleep before was laughable. Tonight he was able to play out with his friends till 7:30 and then quick shower, story, melatonin and he's already asleep. Quality of life improved in so so so many ways.

So on that basis, I'd like to sing from the rooftops - get the melatonin! Try the Phernagan! Don't downplay the importance and impact of sleep on everyone. We as his parents are able to help him so much more being well rested ourselves.

I wonder if melatonin would be any good for us. DS doesn’t have major issues with sleep but does average about 9 hours a night. The main issue is getting him to settle down at night, once he does he doesn’t take too long to sleep but would the melatonin help with getting him to settle in bed?

I'm a big proponent of melatonin. DS has been on it since he was 4years old. It's over the counter in the US and when we first started having troubles we gave it a shot. The amazing thing is in 3 years we've never had to up his dosage. It doesn't make him drowsy or groggy, it just like it turns off the motor in his brain. It's so annoying that's it is prescription here in the UK.

So we spoke with the doctors and they have agreed to remove DS from the stimulant. They also don't think switching to another stimulant will be the answer. So we are going to try Intuniv. Because we have to wait for the physical prescription in the post I have about a week to teach him how to swallow a pill. I have a friend in Canada whose son is on it and it's doing wonders for him.

Unfortunately melatonin dosent help Ds hugely but I completely agree about sleep being so important, will definitely try Phenergan and I'll report back for anyone else.

If anyone was thinking of trying melatonin I would say definitely as sleep is HUGE for us. It seems to help at first but not any more, I've tried long breaks off etc

Mine is prescription would they sort that out for you now that your trying meds etc?

Hope the new ones settle with him better

@krobhix20 that’s great that there is the option to now try non stimulants. There is a good section in the medication book recommended in my op on teaching kids to take pills and you’ve probably already thought of this, but it suggests starting v small literally hundreds and thousands that taste nice and then working up very slowly day by day to bigger sizes using cake decorations, tic tacs etc. Good luck!

I would say yes as that's really why I asked for it. DS has the zoomies at night and finds it so hard to switch off

@WesternEasterner so interested in what you say about melatonin! Sounds like it’s worked wonders for you guys!

@Freshstarts22 is the difficulty settling anxiety or physical overactivity at that time?

@HauntedPencil fingers crossed for the phenergan for you!

Guys we are getting close to needing thread 3! I’m very happy to start again but it will no doubt continue to be “the village” in this thread who really help everyone with all of our med queries.

At the risk of making my op very long I might add an amazing book on mental wellbeing for us as ADHD parents which I know others on MN have read and recommended as well - Jo Griffin on emotional wellbeing for parent carers.

@Freshstarts22 thats exactly why we use melatonin. He's fine once asleep.

I would also say I think it would help with anxiety based sleep problems as it allows the brain to slow down. It's well documented that children with ADHD don't produce enough melatonin. So we are just giving them what they don't already have.

I’ve added a new thread 3 just so we don’t get caught out, but no need to move across yet!!

@HauntedPencil we were able to get it right away. Didn't realize it wasn't a controlled substance. We are going to just try to give it a go tonight. So fingers crossed !

We ve been in Intuniv for three weeks, we ve seen about 40% improvement , it’s been fantastic for us

Not sure about focus but it definitely helped with anxiety, impulsiveness and just silliness

letting you know though it’s not controlled substance so no physical prescription is required, your doctor can email them xxx