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!

Thank you so much for your kind words. Hearing that he has no friends really hurt harder than anything, but today we saw a classmate at the big park near our house who hugged him and said that she missed him so much. I nearly squeezed that little girl right then and there!

School have definitely given me conflicting advice; they said they will prosecute, which they know will worry me as I'm a nurse and have a PIN to protect. They said they will also refer to safeguarding as we have a baby under 1 at home, in which I said that's fine, I have nothing to hide.

It's been the worst week 😭😭😭

The stress of the reduced timetable is worrying me so much but it's for a silly reason; baby sister has her morning nap at 10-1pm, so I'm going to have to have a cranky baby or get my MIL to sit with baby sister while I run down the road to get DS. They have also told me that DS will be by himself with a TA doing work. I don't understand this, especially as they said me doing home learning/paying for a tutor wasn't sufficient for his social needs, but DS being with a TA is okay...?

Make it make sense 👏🏻

Thank you as always!!! I'll look for them now!

Thank you so much for this. Back where we use to live, DS thrived and did well so to me, it's this school and not him. I'm absolutely desperate to get him out of there. If he doesn't enjoy the reduced timetable this week, I'm going to deregister.

@AndrewGarfieldsLaptop oh that effing school, they’re right *** aren’t they?
Everything you say about them is RED RED RED. I would not believe what they say about lack of friends. I would believe Zero when their ethos is so aggressive.

sorry I can’t remember what you said but is it very difficult to find something else? Anything at all?

This is outrageous and it makes me so angry. The other children don’t like him? How on earth do they know what all the children think? Maybe lots of kids do like him / want to be his friend but don’t know how to. @AndrewGarfieldsLaptop Do you have an advocate to help with school meetings and also tell you your rights? I ask because you and DS have rights, lots of them. I was similarly fobbed off by school ( though not as badly or unprofessionally as you) and I pulled my DD out of school and sent her private. It was only after I spoke to an advocacy group that I found out how many rights we had and how much obligation the school and LA have to educate your child and ensure safety.

The "lack of friends"/"children don't like him" line has really rocked me, purely because I worry about him so much being by himself, not playing with others etc. he has a lot of friends outside of school, like children of my mates so it feels like I'm almost being gaslit?

I've spoken to an external company (sendass? Cant remember right now!) who have been very helpful but no, I have no one in the meetings. My husband is lovely but he does have a tendency to side with school which I hate, as it feels all DS has is me, endlessly fighting his battles everyday.

But!!!! We have had a great day today. We have been on a Pokémon go walk, we have eaten well, and it's been lovely.

also I want to say thank you everyone. I feel so alone with all of this and out of my depth. I never expected to be fighting over my son's right to a decent education.

Please don’t over think the “lack of friends” thing. It’s an incredibly spiteful and unnecessary comment that the school made and I think only made because they don’t want to give you any reason to stay. It’s extremely unlikely to be true.

If you’ve seen your kid having friends outside school, I promise you it’s lies!

those fuckers are “staging” a certain picture so that they can kick him out easily! They can’t manage anything remotely different, they probably don’t like you either so they don’t want you there.

chin up, and have in your head that they’re talking bllcks! I ll PM you to discuss schools x

I'm so sorry to read this. My DS struggles with regulation and a few years back he did find friendships harder but he still had a few bonds. If you've seen your DS make friends outside school I find it extremely unlikely that he isn't in school. I wonder if they say this so you wouldn't object to him being just with the TA. The situation sounds awful for you both I'm so sorry.

I'm thinking the same. We had friends back when we lived up north, so it's not like he's always been a loner. We have had an issue that school have placed him on the teachers desk since reception so he never sits with the other kids, despite me asking if he can sit with a friend.

I think the only unusual thing is that he likes girls more than boys, but that's okay with me.

I'm in absolute bits about tomorrow but I'm putting on a brave face for him!

Hello oh wise ones. I need some advice.

DS has been on 20mg slow release Equasym since we finished titration in June. He has a 5mg short acting top up at 2/3pm. Until recently, this has worked well.

We had a medication break over Christmas and DS was fine. He went back to eating loads and he wasn't that difficult. Since then he's had at least one day off at the weekend to allow us to fill him up with food. It's been fine, very manageable.

This week (and last week) I've wondered if his meds have been working as well as they were. Nothing specific just instinct maybe. This week school rang me to say there had been two incidents of him essentially being very disregulated and the behaviours they have seen are almost identical to before medication. I have also had an email from an external club to say the same and he's at risk of exclusion from this club.

I asked DS if he felt his meds were any different and he said yes they don't work anymore. But I'm worried m question was too leading. He couldn't elaborate.

He hasn't really grown since June. He's maybe put on 1.5kg, max of 2. He's grown in height but not ridiculously so. Is it normal to need a meds increase after a period of a dosage working well? Is he building up tolerance? I thought, because they were working, he'd only need an increase if he grew. But perhaps not? I've no idea!

Do we need a different type o medication instead maybe? I know his dose of 20mg isn't ridiculously high and we never did see any amazing academic changes on the 20mg. He's basically just less impulsive and focuses a bit better, but he's still underperforming at school. We were initially told the right dose would be very likely to lead to good academic strides. I don't mind that it hasn't as DS is just about where he should be, but I can't help feel this is another indication that the dose is perhaps not right.

All thoughts welcome!

Oh, and is it possible the medication break of 2 weeks has affected things? He's been back on since Jan 5th. So just over 2 weeks.

This is what happened with us, without a break. He was doing so well then the wheels came off and he got excluded from a club, and he's basically not right now. He's not able to go out at lunch at school at the minute. We just can't really work it out we've gone from 30 to 40 mG Equasym but due to the shortage it's been Medikinet and that hasn't let to a huge improvement I'm afraid to say, maybe the formulation of equasym will help.

Sorry not to be useful but basically where we are now.

With all medication, the body builds up a tolerance. A good example is pain relief; for a while a small dose of codiene works and then after a few months the dose increases etc. but sometimes you need a dose change depending on your metabolism; if you have lost/gained weight, you might need more.

DS was on 10mg of Medikinet for 6 weeks and it was great, and then suddenly it wasn't and we went up to 20mg.

Hope everyone is okay; DS is responding really well to the 2hr school day. School are still pushing for specialist school but I'm ignoring them for a bit!

Thanks both. I guess my concern is that he can't just go up 5/10mg every 6 months, can he? Does it eventually settle, do you think?

Gale the 2hrs a day at school are working well @AndrewGarfieldsLaptop 😊

Hi all - we finally got an appointment with the NHS after 2 years 8 months. And can now switch care to NHS. Doctor we met was lovely and v sympathetic to our plight. Also going to be investigated for ASD.

anyway - she has suggested splitting the Medikanet top up that we give at lunchtime - so instead of 15mg XL in morning and then 10mg at about 12.30, she wants us to do 15 mg XL in morning and then 5 mg fast relief at 12.30pm and 5mg fast relief at 3.30pm. DS8 is so difficult to manage in evenings - because of the “crash”. Has anyone else tried this?

@Hels20 that's great news and yes, we find the top up really helps us avoid that hyperactive crash. We don't give a top up at the weekend to enable DS to actually bloody eat something and we really notice he becomes quite manic. We don't have that at all during the week when we do top up.

No I agree they can't just keep going up and up. Since mine is 11 wondering about hormones & general growing - going to give it a little while longer. He's had a better week this week.

Glad to hear he's got on better with the 2 hours a day @AndrewGarfieldsLaptop hopefully things have been a little easier for you this week

Hi all, we are basically in a similar position to many of you in that meds were amazingly effective for about a year on the current dose. But they are now not quite as effective. We didn’t really take enough breaks (almost none for first year of meds which included 6 months titration), but on the plus side ds is no longer in mental health crisis which was why we didn’t, as we didn’t think he would cope.

We have been taking far more breaks for the last year - since Jan 2023 we’ve had x 2 two week breaks, x 2 one week breaks and say three breaks of three days. The consultant has said his view is that breaks reduce dependence and keep the meds effective.

My instinct is that he needs a higher dose, but we have been told we can’t increase yet as we are already on 40 daily (30 plus 10 top up) and he’s only in Year 7.

I'll discuss breaks next time - think I've mentioned before we've always been so nervous of them due to the long time he takes to settle on them - it's such a tricky one isn't it

Hi everyone. I have read all the posts on this thread and I feel I have definitely found my people! I relate to all the challenges particularly re masking. My son could never mask at school - his behaviour at times has been awful but much better at home. He makes noises in class, disappears under tables etc.

Long story with my DS so will try and keep it brief. He was diagnosed with ADHD 3 years ago. He was started on medikinet, but made no difference in school - or if it did, it reverted very quickly. Tried different meds but essentially none seemed to work (though I don't recall many increases). Turns out after lots more tests he also actually has autism and a significant language disorder.

He was clearly in the wrong school environment too. He was put in an isolation room for the last two years of mainstream and this has caused considerable trauma (teachers were known to hold the door shut - no co regulation, just left in the room like a wild animal).

He is now in specialist school, takes aripiprazole and we are back to basics with his ADHD meds. At Christmas, he was put on 10mg medikinet fast release, then 5mg lunchtime. The 10mg morning dose was miraculous for his first week back at school, but it is reverting back to normal behaviour now.

We have a paediatrician appointment this week, so I think I need to ask for an increase for the fast acting see how it goes then give the XL version a go? Does that sound right?

Surely though 30 XL plus 10 top up is not 40….
40XL is very different (we used to be on this last year but came down to 30)

is that what the consultant said?

would you consider giving 40XL with no top up?