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!

@ANonnyMice My ds often gets headaches on breaks and is very very emotional. My understanding is that unfortunately the meds are needed to prevent the effect of the meds wearing off and that in the US they often don’t require any meds breaks in term time but say there has to be one break of at least two weeks every year. You could ask if weekend breaks are required given impact. We don’t have weekend breaks and just do them in the holidays.

@rhubarb84 it is very hard indeed and in a way it was easier for us because ds was at crisis point so we couldn’t easily have justified not trying them. I really do sympathise!

@HauntedPencil sorry to be so late to the party but you asked about hobbies. I have come to see mine cannot manage anything more or less after the end of the school day. We do scouting but that’s it

A weekend break so soon in sounds a bit stressful maybe it's worth asking about that. Our consultation doesn't advocate them at all, but we have seen a few weeks of big symptoms (thankfully dying down) and another big incident at school - so I will be asking again.

Thanks Miss H - we do scouting but even that sometimes feel like it adds so much stress.

Hope all the year 6 are ok and enjoying the end of primary stuff and it's not too stressful

Thank you, I have no read both. The problem is my son is so fussy with food, so reading through the list of ideas, there’s not many that we could use. He won’t have any spreads, cream, milk. He might have an omelette but I don’t have time to do that in the mornings. All he will eat for breakfast is a bowl of dry cereal. He’s now skipping lunch most days and the best I could probably get him to eat for dinner would be spaghetti bolognaise with cheese but that’s only once a week. Other than that he eats very bland, nuggets etc. snack wise he will eat chocolate, but even that he’s not interested in whilst meds are in full force. I can’t see us being able to maintain weight.

@Freshstarts22 my son is also very fussy. We were desperate to stay on as he was in crisis before meds so I started getting up at 6.15 and cooking him a bespoke breakfast - omlette, sausages, bacon. I know how daunting it is, so I do very much get in

Sorry - get it

What's he like for drinking? I've started using
Milkshakes and they can pack a few calories

I already get up at 6, well the alarm goes off at 6. I have to walk the dog and getting ds ready can take a while. Mornings are so rushed I just don’t think I can cook breakfasts. I feel really bad for saying that as I know he needs the calories.

unfortunately he won’t drink milkshakes or smoothies or anything. All he drinks is squash or water.

Our mornings are like this too, DS likes bread so he has a load of bready things - he barely eats in the day but is hungry in the evening - I usually get him a school hot lunch and cook another meal at dinner time.

DS likes baguettes so he has some mornings just some sliced bread with loads of butter or pre packaged pancakes, crumpets etc - he barely touches cereal so I've stopped with that.

Morning all! This has been our first full school year on meds and I can’t believe it’s July.

Just wanted to post now it’s nearly the end of the school year to give myself and actually all of us ADHD parents posting on this thread a weekend reminder to be proud of ourselves, if that doesn’t sound too cheesy.

Wherever we’ve all got to on medication we’ve almost completed another school year and (unless this is just me!) it’s quite intense managing advocating for the kids at school, whatever life brings for them and us at home, the meds and keeping the calories up. I definitely don’t always take the time to acknowledge my own role in all this so I’m taking a proud moment this morning and wanted to invite anyone on this thread who would like to to join in

@HauntedPencil your breakfasts sound really good. It’s trial and error isn’t it and it sounds like you’ve dropped a few things to get to what works well. I hadn’t thought of baguettes which actually my ds likes too so I might add those to my breakfast list!

@Freshstarts22 I completely get that sometimes there just isn’t enough time in the day and the dog walking definitely cuts down cooking time. Just thinking aloud but depending on how long dog walk is and if there’s another adult in the house at that time, could you put a few things in the oven before you go on the dog walk? We do hash browns which ds likes and 3 or 4 of those with ketchup is 300+ cals. Would he eat those with some yoghurts? Would he eat cold sliced sausage cooked the night before? Just a few random ideas

Is lacking of appetite a good sign you're at the right dose. We have been titration up, currently on 40mg a day, and appetite seems the same. Worried how high we need to go! How will we know when the dose is right. The problem is mainly at school concentrating, remembering things, being on Time etc so without being there to watch him, his am I supposed to know.

@Munchies7 Just a few thoughts and you should definitely read these in the context that I’m just a mum not an hcp and have no expertise on meds whatsoever.

Are you giving meds at the weekend at all? Our consultant advised this, at least initially so we could tell if it was working. We watched him playing board games and got him to do some homework. He was better than before meds at 10, but by 30 the difference in his concentration was startling. We could see he was less physically overactive as well. Hopefully you are seeing positive effects?

Appetite suppression was such an issue for us at 30 that consultant wanted to stop as he was starting to drop weight. They might say this to you too perhaps. Are you weighing him regularly? The weight can fall off really fast, we found.

We’ve also had real problems with behaviour/mood in the evenings the last couple of weeks. Does was increased to 20 four weeks ago so I’m unsure if it’s linked. Every night between 8-9pm we’re having really difficult behaviour and he is just so angry. Which isn’t unusual in general, but has been better since meds and was never a problem in the evenings before. He would usually be in bed by these times but he’s struggling to fall asleep so up a little bit later.

It's taken my DS a little while to settle after each increase and being a bit angry and unsettled in the evening was true for us too, but it did settle down. Maybe the break coming up will help.

I think we’re nearing 4 weeks since tbe increase so I’m guessing it would have settled down by now?
he’s really anxious about the the summer holidays and going into year 6 so it could just be that too.

Hi all,

So sorry for the radio silence. My DS has been doing really well and I sort of forgot about this thread! I never in my wildest dreams thought we'd not have to worry about him. But it happened! I need some advice now though.

My DS is v bright on paper. Educational Pyschologist scored him as top 2-5% in most areas. He scored average for working memory and also for processing. He's an intelligent little boy but he's always struggled at school. He started reception way ahead but now we are at the end of year 3 and he's solidly average.

We started medication in April. His behaviour has improved hugely. He now finds school 'easy' and is happy. I'm thrilled to bit with this BUT his attainment hasn't improved. I had hoped/assumed that medicating him and improving his ability to focus would mean he did better at school. Please understand, I have absolutely no problem with him being average at all but I heard so many stories of children suddenly really 'getting things' and progressing. This just hasn't happened for us.

Would be really interested to hear your experiences of attainment in school after medicating. Perhaps it's just too soon to tell and is still early days? I would hate to be holding back academically if we were just on too low a dose.

We are not on the maximum possible dose - we are on 20mg of Equasym with an occasional 5mg short acting top up. He has slowly titrated up and has no side effects other than a lack of appetite. Paediatrician doesn't think we need to move up as the main 'issues' (behaviour, lack of focus, inability to work independently) we had before have stopped.

@Freshstarts22 we had this initially but as other have said, it settled. Usually within two weeks. If he's struggling to sleep, could he just be really tired? Our DS has melatonin to help him sleep which has been absolutely brilliant for us.

@WesternEasterner we're at a similar stage so I don't know yet, but commenting as my DS sounds similar to yours. He also started meds at Easter. I wrote an update a few days ago about how his school report this term was much better so we have seen some improvement at school, but there is still a big gap to close between his apparent intelligence and his actual attainment. I was assuming that since he has had several years of poor focus, it will take a while to 'catch up'. So what we've been trying to focus on is the trajectory he's on (is the gap narrowing or widening), rather than his actual results right now.
Have school said they see an improvement with your DS?

@WesternEasterner I am guessing the kids that do really good academically (post meds) were probably doing really badly before due to lack of focus (or uncontrolled emotions). This is where my DS is at , he went from C/D to A/B- in key subjects

if your DS had already reached his academic potential irrespective of medication , he might not get any better academically post meds as there might not be any connection between his academics and focus … not sure if this makes sense though 😂

fwiw my DS’s creative writing got worse post meds; his imagination went straight down 😣

Thanks @LoveMyADHD and @rhubarb84.

My DS's school report wasn't brilliant..much the same as last year's but with a few promising remarks. He had a few low effort grades and I'm unsure if that's just him being lazy because he is a bit lazy, or if it's his ADHD. So hard to know! His dad was always lazy at school, did the bare minimum and scraped B's and C's. He now has an excellent job and is very successful. So he could just be following in his dad's path.

I was not ever particularly bright but was a very hard worker and loved school - I got better grades than my DH but am less successful overall and definitely not as intelligent. (I have other strengths!!!).

I'm going to talk to his teacher tomorrow but my thoughts are that there should definitely be some increase in attainment evident if the medication is working. Maybe you are right and it's just early days. I'll definitely talk about the trajectory and closing that gap, that's a good way to think about it. 👍☺️

We have also managed to work out a consistent way to get calories into him, by giving him a big glass of gold top milk every evening with his dinner. Luckily he loves milk and he's very happy with this! I assume one can't have too much milk, I reckon he has just over a pint a day if we include breakfast and yoghurts!

Same for my DS, has it all in his mind but he struggles to get that onto paper