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!

Hello I’m new here - what a brilliant thread. Long story short ... DS has been diagnosed with ADHD and he’s been prescribed Atomexatine (Strattera) - has anyone had experience of this? I’d love to know how likely it is that he’ll feel sick with it. The dose is 8mg morning and night. Also has it effected the ability to fall asleep?

Thank you so much!

@neonleopard welcome to the friendliest corner of mumsnet! It's not always busy here but I get a lovely little email whenever someone posts and so always come back!

Medication has been life changing for my DS. We had absolutely no side effects bar a lack of appetite. We've also not had any issues with shortages really, it's been a bit harder to get stuff but not much worse. I've never had to go to more than 3 pharmacies to find what we need. Your plan of trialing now sounds so sensible. Hopefully he'll be steady by secondary and you won't be second guessing if any changes are down to school and routine changes. You may as well try, the medication is not something that builds up, it's either in your system or it's not. So if it doesn't work, you just stop taking it. No harm done.

@MissHavershamReturns well done, you ABSOLUTELY should be proud of this. I'm proud when my DS puts on weight too. He's definitely not growing at the same rate as his peers. Really hard to know how much of that is down to the medication as both DH and I were late to hit puberty and at 9 I'm guessing that's about to
hit!

@Worriedaboutleaving hello to you too! No experience of straterra - is it a stimulant type? That's what my son is on. If it affects sleep, you can always get melatonin. Lots of us use this.

@MissHavershamReturns this is amazing to hear about his weight and height. I've read all the previous posts and know what a huge and stressful journey you have been on!!

Hi @neonleopard , welcome to the thread! My DS is 10 and sounds similar to yours in some ways, his main issue is/was lack of concentration in school.
Otherwise general distracted-ness at home which we had got so used to we almost didn't notice...
We did also used to have huge meltdowns at home but these had started to become less of an issue even before diagnosis, I guess just growing out of them. But still the odd meltdown from time to time.

Anyway, we're about 8 months in and I'd say medication has been mostly a huge positive. I think it's enabling a virtuous circle where he's able to focus and do good work at school, which is helping him feel more positive about his own abilities and be more willing to work harder. And we're seeing some of these changes even when there isn't much medication in his system, eg in some of his after school activities.

One thing I'm only starting to see is just how much him being pretty rubbish at focusing on school had affected his view of himself. It's not something he'd ever talked about, but I think he must have started to believe he would never be any good at school. The diagnosis itself did really help him understand that there was a reason he struggled, so that alone without medication would have helped a bit, I think. But I think the medication has gradually, cumulatively, improved things much more for him.

A couple of weeks ago he came top of the class in a maths test and he was buzzing! He's never struggled with understanding the concepts, but actually concentrating for long enough to complete the test and be able to 'prove' his ability is huge.

The main downside is I'm pretty sure it stalled his growth for 6 months, so he looks smaller compared to his class than her used to which is sad.

Anyway, hope that helps you a bit!

(Also, in the meantime, have you experimented with caffeine? The first time we have my son a coffee he went from spinning around the room and bouncing off furniture to totally mellow and calm, in a few minutes.... Just saying!)

@Worriedaboutleaving welcome to the thread! Sometimes the leaflets give percentages for side effects, but it sounds like yours doesn’t. We are on a different adhd med but feeling nauseous has not been an issue for ds even though he has a very sensitive stomach and gets travel sick etc. I just did a quick look online and from the info on this page https://www.rxlist.com/strattera-drug.htm it looks like in that study of the young patients only 0.4% had to stop taking it due to nausea. I’m not sure if there are peer-reviewed articles etc on this.

We have always been very aware of potential stomach side effects for ds so we never give it on an empty stomach and we always make sure he has had a significant meal before we give it, which apparently can help avoid those issues for some children at least.

@Worriedaboutleaving should have added my son’s sleep actually improved after the meds as he was less anxious.

@WesternEasterner and @YearLongChristmas thanks so much for your kind thoughts. I felt really seen when I read them and they actually made me cry.

I’ve had so much support from everyone on here. Thanks so much to you all, each and every one of you, as I know without you all I wouldn’t have felt as confident about the meds as I do!

@rhubarb84 loving your young man’s maths test triumph!! What a victory and it sounds as though his bravery and determination have carried him through some tricky times and he’s now feeling much more positive. What an amazing result

Thank you @MissMissHavershamReturns and @WeWesternEasterner for your sensible replies to my rather panicked first post! I will look at the suggested book.

@rhrhubarb84 a lot of similarities! Thank you for the detailed reply. I was actually aware of the caffeine link but hadn't really made the connection for him - he does love a Starbucks iced latte incidentally 😂. Might stock up for SATS week!! Love the maths test success - my DS is doing ok-ish academically but really notices how much quicker his peers can work which really knocks his confidence, he really hates school (work), so that would be a key reason to try the meds. I hadn't come across the growth issue in my research so far - I'll take a look. He is the shortest boy in his class already....!

I think I will speak to school in the new year to see how he has been in the classroom lately before deciding, and obviously I need to tell him the outcome of the assessment and see what he thinks (saving that news for after Christmas !). He has a lot of neurodiverse classmates and his younger sibling is in a SEN setting for different reasons, so it's not unfamiliar territory so I don't think he'll be surprised. Does anyone have any experience of sharing that news with a slightly older child?

@neonleopard ny ds was ten when we told him. He really likes all dogs have adhd and when I told him we read the book together.

@neonleopard I meant to say that height is definitely a concern on an individual family by family level and there are people on this thread whose children have been impacted.

The medication book does say that on a macro level the risk is very small and even large studies conducted in the US where children have minimal medication breaks suggest the loss of ultimate adult height on average is no more than 2 cm. So while some children might unfortunately be impacted, for most children this should not be an issue.

It is one of the risks we all need to weigh up with the medication, but I hope this info helps a bit.

My sons been on equasym 20mg for most of the year now. Started on 10mg. He has autism as well as adhd and medication seemed to help a lot with the angry outbursts.
However, the last couple of weeks have been awful. He is angry everyday, really being aggressive. None of them are new behaviours as such, but behaviours that had become much less frequent.
It’s now a daily occurrence and I am really really struggling. I can’t pin it down to anything that might be upsetting him so am wondering about medication.

Has anyone experienced this? Could medication need adjusting even though he’s been stable for ages?

So sorry my dear just realised I missed it !

yes DS did very well, he got four offers but worked hard and in all honestly without Medikinet he wouldn’t get anything, zip, nada!!!!
we owe 95% of it in Medikinet simple as!

if you’re interested in 11+ you might want to start prepping now, medication should calm him down enough to get his thoughts together 😉

welcome to newbies !
sending love to all!

we’re already a week in of no meds it’s been interesting 😎

Hey everyone. I hope everyone is looking forward to Christmas!

We have made the hard decision to remove DS from his school to home educate. Spent a lot of yesterday crying. He was suspended last Friday for being disruptive and feeling overwhelmed because of the change in Christmas routine at school. I kept him off Monday/Tuesday/Wednesday and took him back in on Thursday following a meeting in which they said his social skills will suffer if I continue to keep him home.

Thursday went okay but yesterday he was in school for an hour, and kicked his teacher and cried under a desk. We had to go and get him, and his teacher was crying with pain in the headteachers office. I'm going to say "no comment" about that one. We got home and he was hysterical, full meltdown mode and then he sobbed saying Santa isn't coming to him and his sister.

After a lot of reassurance, I managed to get him settling to drive up north to my mums for the weekend and he was a bit of a state with my mum. But today he seems okay.

We have an EHCP in process but I think we are going to select a specialist school but home educate until a place appears.

Right! I'm going to catch up on you guys and wrap some presents! What have your kids got?

Hi neon!!!! My son had a few of the anger meltdowns and they are usually when we have had a medication increase or a poor nights sleep. My DS is now on melatonin and it's helped.

Hello @AndrewGarfieldsLaptop oh that sounds so hard, it sounds as though (that) school really isn't working for him. Saying that Santa isn't coming shows he must be feeling miserable about it all.

Hopefully getting him away from that setting will give him chance to see himself differently. Wishing you a good Christmas and all the best for a fresh start in the new year.

First day of medication break for us... lots of spinning and bouncing! And he wants to try a melatonin break too, so we'll see how that goes...

Oh man… that’s not easy!

it might be though that this school was pretty crap for him - my DS previous school brought the anger out of him. He’s now in secondary and although harder academically , he’s happier

very good decision to home education till his moods are balanced at least

What actually made him kick her? Obviously not saying she deserves it, but what did they actually do to bring this out of him? There is always a reason, and sometimes it might be aggression and lack of empathy 😉

sending lots of hugs to you !!

@AndrewGarfieldsLaptop sending you lots of strength. From reading all your messages over time, I think you've done the right thing. Whatever it is, school wasn't working for him. You know him best and you can get him back to being regulated, calm and happy. THEN you can think about what comes next. The EHCP will be really helpful. There are lots of different mainstream schools, I've worked in some that are 'inclusive' and some that are truly inclusive. One had a box of fiddle toys and ear defenders available in every classroom, for anyone, anytime as well as a selection of flexible seats including wobble cushions that again, anyone could have. You may get find one that works really well for you, and if not, specialist provision is in my experience always really good.

@AndrewGarfieldsLaptop I’m sending you an un MN hug and lots of caring best wishes to you and ds. What an incredibly hard few weeks you both have had I can completely understand your decision and I’m sure the EHCP will really help.

I think the right school can really be the making of our children. I wanted to tell you about someone I know through a previous workplace. He has a son with ASD and ADHD who used to really struggle in mainstream including sometimes breaking classroom items and melting down to a point that the other children had to leave the classroom for their safety. That child has been in a special school for four years and in that safe space has learned emotional regulation to the point he almost never melts down and become a really happy child at school. So much so that they are applying for him to go back into mainstream at secondary but in an autism base, so he can have the best of both worlds.

We are going for a meds break over here 🫠. DS has just announced that he doesn't want to take his meds for most of the holiday. We always agreed we would be led by him as it's important he makes his own decisions and understands how/when his medication helps him.

I'm also sick to the back teeth of nagging him to eat so at least I'll get a break from that. Let's see how long he lasts, not sure it's wise doing over Christmas, but here we are.

Happy Christmas everyone. 1 mg of Intutiv didn’t work for DS8 so doctor increased to 2mg. We started it yesterday - and it cost me £100 for 56 tablets…

We are also continuing on 25mg of Medikanet a day - though as pp - he also wants a break in the holidays (and at least he eats more).

he is still struggling socially - no friends, no invites to birthdays - and just wants to play on iPad.

@AndrewGarfieldsLaptop sorry to read about how this week has been with DS, I'd bet this time of year is not helping either! Fingers crossed for a short wait to access a better school for him.

So that's me completed the form to request a move of school for DS. I've told him not to get his hopes up as there's a fair chance it won't happen. He told me that a boy who was in one of his classes made a move to this particular school earlier this term (he never even noticed until weeks later that this boy was gone!) so it gives me a bit if hope that they have spaces at least.

@WesternEasterner I've never done a lengthy break off meds with DS, just odd weekend days. Will give him a day off tomorrow but I'm debating giving him meds today even though he's not going out with friends. We've got a couple of films lined up to watch later and it's to try to keep his interest focused on them and stop him wandering off after the snacks are done 🙈

@Hels20 that's us too, to a T. Just wants to stay at home and play Roblox. I will say though that he has improved socially since starting his meds. But it's clear he'll always be a bit socially off kilter shall we say. But then I think my husband is too....🤪

@nightwebs I'm already worrying about the pantomime we are going to on Boxing Day. But he managed fine last year and if he just eats all the way through, at least he's eating 🤣🤣

@Hels20 I'd say that DS seems to have become a lot more self-aware since starting meds and he acknowledges he finds it tricky to make friends. The friends he does have are mostly ND also and they share similar interests, your DS maybe just needs to find his own tribe in time, so to speak?

@WesternEasterner that's maybe what I need to do, keep a steady stream of snacks going so DS stays rooted to the spot! 😂

Thanks @nightwebs - DS has been on Medikanet since a week before his sixth birthday. He is now 8.5 years old. He has people he will chat to at school but no friends. I try to get him to do things but all he wants Is his iPad. it’s better when we are on holiday and there is a pool and beach - but he has so few interests. We have tried lots of things - and v tired of well meaning friends of mine saying “oh, get him into football.” We have tried all of that but you can’t force a child to play sports. Some kids just aren’t into sports. How I wish he was!!