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!

@MissHavershamReturns I find it hugely interesting that so much of what is discussed on this thread is around food and weight. It's hard, isn't it.

We have had such an issue with weight but thankfully he’s put on quite a bit in the summer as I wasn’t medicating

2nd week into school and he’s actually put on weight which I was a bit surprised given he’s not eating for about 10-11 hours while at school, after school clubs, and school bus

what I did:

1. guernsey milk 3 cups a day ; 2 of these in the morning (1 as soon as he wakes up)
2. drink calories where possible , they have lots of water at school
3. anything I give him is high fat, olives, avocado , cheese , milk
4. i give snacks, meals often rather than big meals less often
5. we re using Nubest for height, he went grew 12 cm since May 2022!
6. we don’t medicate at all in the weekends

I know it’s super stressful but perhaps try some of these tips they might work out ? xxx

@LoveMyADHD this is really helpful, thank you 😊😊

We do Guernsey milk as he loves milk but will up it from 1 to 3 cups!! One as soon as he wakes is a good call. We also give him milk with dinner but perhaps we'll do it with all meals at home.

Does he take anything in at school to drink? I'm considering this an option but will wait and speak to the paed in November once we have tried other options.

I'm going to give him more cheese too, this is a good option and something we probably don't give him enough of at the moment. Unfortunately he won't eat avocados or olives. Avocado he will eat in a smoothie but only tiny amounts.

Did you find the NuBest was only good for height? I worry that is DS shot up he'd just be even skinnier still?

Med breaks are our last resort. Really going to focus on his weight this next month and see how we go 🤞🤞

No I don’t give anything for school , I have accepted that anything I give him will be ignored 🤔

nubest pills are for height but there is a new nubest protein powder that is for overall growth

i personally worry more about height as it can impact overall growth, confidence etc

if your DC’s shoe size changing? That’s a good indicator for growth x

Glad things are going on at school Miss H.

We are on 30 too and generally this works and has helped a lot - however we find that periodically he has a week or even a few weeks with meltdowns - sometimes really bad ones and then it calms down again.

Does anyone else find this?

His consultant feels he's on the right dose and these things will happen from time to time

I've given up on snacks for school now too. We have a not hungry during the day and he is hungry at tea time but drinks are great. Things like milkshakes here - he loves them. Where possible I let him have a big McDonald's one !

We are on 10mg twice a day and find this. Beautiful few weeks, massive meltdown. We had one last night for no reason.

How is everyone doing? DS is a bit frustrated with school currently, so asked me to homeschool him 😭

Also thanks everyone for talking about appetite; DS's during school time has vanished. I've even put cold pizza in his lunchbox and it goes untouched. I've started putting in a smoothie, apple and cheese and that's it. When he gets home and the medication is wearing off, then he becomes ravenous again.

Same for me with the food. I don't bother putting a fresh snack in his bag I put in a little something that keeps so he can eat it if he gets peckish, and pay for a hot lunch he probably just picks at. Can't deal with the waste of time with the sarnies.

That's interesting that he's the same - we find it's the summer when he struggles to sleep and is more tired, and excitement eg Christmas when he is due a nice treat and often ruins it 😭

And as predicted, massive meltdown on the 20mg leading to being suspended from school for the week. School won't allow him back until he is settled on medication, so back on 10mg we go.

I've literally spent the day crying.

@AndrewGarfieldsLaptop I'm really sorry to hear that. I suspect everyone else on this thread has been in a similar situation as you. We certainly have. I don't know that I have any advice but I do know how you feel right now. You aren't alone.

Remind me/us of the key facts for your DS? Is he on 20mg in the form of 10 and 10 or is this the actual 20mg? What brand are you using? I think that there are subtle differences between brands even though they are the same medication.

@AndrewGarfieldsLaptop sending love and strength for these tough days. We have been there and now things are better. Things can definitely improve

Thank you to you and @MissHavershamReturns 😭 I've really beat myself up over the past 24hrs.

DS began on 10mg medikinet, modified release. Has some impulsivity, but overall it was fantastic. Doctor first increased to 20mg in one go, and this led to aggressive behaviour. We had a "meltdown" after 10 days which led to him being more aggressive than he's ever been. Then we split the 20mg dose to 10mg/10mg, one modified and one fast. And again, 2 weeks later, aggressive behaviour happened with no trigger.

Spoke with his team today and DS is now back to 10mg modified once a day. I did this today, and by 4pm he was back to his scatty self... forgot how annoying it was 🤪 but, he's managed to eat and sleep, which is better than it has been. Maybe we just need to keep it at 10mg.

I feel like school are really annoyed. I mean quite rightly so, he hit a teacher and hid in a cupboard screaming. But they sent home work to do on Thursday which we have completed, and all the feedback that DS got was "thanks". He's 6, and he thrives off positive feedback and "thanks" was just a bit shit to show him really!

Sorry to hear that @AndrewGarfieldsLaptop . I'm no clinician but has anyone discussed trying 15mg if the step up to 20mg is too tricky? I only say that because we had a rocky time going up from 10 to 20mg (for us, it was sleeplessness). So when DS went up to 30mg we asked if we could do it gradually so he got a week of 20 + 5 mg. Might not be appropriate in his case of course, but just a thought.

We're actually about to give DS a week off meds as schools are off for a week. Honestly, partly it's to see if there's any difference as the meds have never been dramatic for him. And also it would be nice to see if he could have a week of solid eating and sleeping. His appetite did get quite bad, we had weeks of having to remind him to take every mouthful. Although the last few days he's been starving, sleeping in, and badly behaved in school 🙄... I'm hoping it's a growth spurt coming!

Thank you so much for replying. I'm thinking that the doubling up was too much for DS. When his doctor calls this week, I'm going to suggest 15mg. He went back to school today and did really well, came home and did his homework right away. Wouldn't stop bouncing on the trampoline mind you 😆

@AndrewGarfieldsLaptop have you considered an afternoon top up of 5mg at around 2/3 pm? We do one for my DS and it seems to mean the medication wears off more gradually so he doesn't get the manic 4pm bounce and silliness that we get otherwise. When it wears off at 6pm he is generally ok, we can tell it's worn off but I would say he's not silly or hyper.

It sounds like the dose you are back on is probably the right one.

Also worth remembering, and I have to remind myself of this at times, that his ADHD meds won't make him a robot. He will still have bad days, he'll have great days and wobbly days. Just like any other kid his age. They might be a little more extreme at times but he's never going to be exactly the same every day, and no child will be.

Hi, I've had similar this week and our first exclusion. Calmed straight down and has been crying/depressed all week. Sorry to hear you've had the same

We are 30 mG on all day, school suggested trying a tip up but when he was on a lunch time top up, consistently forgot. I've called the consultant but I've an appointment in 4
Weeks - she dosent usually come back to me very quickly.

He's started saying hes feeling "hangry" and tried, so the simple things are worth trying and I'll see if he can be enoursged to eat his snack more at school. He's ravenous now when he gets home.

@HauntedPencil is there something in the air? We are in it together.

Thank you for this. I have to remind school (after their throwaway comment that he would be the "perfect" child once he got on medication) that we are only 8 weeks in, and he's still getting his head around everything. IMO he's done so well and ought to be praised for this, but school seem to think the tablets will "fix" him.

This is what my consultant says to me, stuff will happen it's not magic. They will have a shit day etc. I do feel something is off though it's the 2nd bad one in 2 weeks - possibly tiredness of the new term not helping etc.

Quick morning update from us. We have been just concentrating on surviving the start of secondary and it’s been an epic journey for ds who is dual dx with ASD and struggles majorly with change. Dp and I are really proud of him though, as it finally seems like things are settling down for him at the new school after a bumpy ride in and he’s able to attend class about 90% of the time and visits to the Pastoral Centre Team are starting to reduce a bit. His main friend has started secondary with him so that’s also helping.

We’ve still been dealing with weight issues as he keeps shooting on up (puberty definitely starting to hit) but while his weight is also going up it’s just not moving up quite so fast.So he’s only just into ‘healthy weight’ now and if he put on another cm he wouldn’t be. That said, we’ve had great success recently with a supper time meal I saw in the recommendations in a US Adhd magazine and he has put on a kilo in about 6 weeks with that. In total he has put on 3 kg in the 7 months since we saw the ADHD clinic on 14 Feb.

I feel the meds are definitely showing more and more signs of not being as effective as he’s back to being more loud and bouncy than he was. The cause of that’s probably because he needs an increase as he’s put on weight, but with the level of his appetite issues I would not be sure about any plan to increase him. We see the consultant in December so I will ask his view then.

Has anyone has experience of being stable but then having to go up as with increased weight/age more ADHD symptoms return?

@HauntedPencil and @AndrewGarfieldsLaptop I hope this last few days have been a bit better for your dc and also for both of you

I think it’s very easy for schools to expect immediate improvements from the meds and there will in our experience still definitely be tough times. That said if you drew a graph of all the meltdowns/major episodes since we started meds and one from three years ago before meds there would be far more on the pre-meds graph. When times are tricky I can struggle to remember that, but it’s definitely been a much better 18 months for him on meds than the year before. I hope the same will be true for both of you when you look back in a few months from now.

How are things for you @LoveMyADHD @WesternEasterner and @rhubarb84?

Also a quick shout out for @NurseP, @klayton @Hapagirl48
@KTC40 @Munchies7

How are you all and how is the ADHD meds journey going?