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!

I put off giving Medikinet to my son, I was so concerned about the side effects. So for 6 months we've avoided it and had to put up with hell in his school who would suspend or send him home every week. We finally decided to start this medication about a month ago and it has been transformative. He's able to stay calm in class and attention span has improved massively. From getting endless complaints each week from the teachers, we are now getting positive news all the time. It's a shame the school term has ended because he was doing so well but hopefully he can carry this on.

The only major side effect we've noticed is that his hyperactivity in the evening can increase massively from before. He can literally be bouncing off walls a few hours after the medication wears off. But it's something we have to get used to and manage.

He's going to be 7 in September and will be starting Year 3. Currently taking 10 mg which seems a good dosage since the previous 5 mg had no effect other than increasing irritability and aggression.

That's fantastic! I'm so pleased it's had such a good effect

Since my last post I’m pleased to say our evenings have been much better. I think tbe behaviour I was seeing May have been more due to anxiety around the end of the school year than medication.
He has also put some weight back on after eating far too many donuts!!

That's amazing @klayton . We had a similar issue with hyperactivity after meds. Our paed suggested we give a smaller top us dose mid afternoon and that has really helped. I think the "down" is more gradual? It also means he has stamina to do his extra curricular clubs and homework which is really helping him feel more confident.

Hi everyone, so DS has finally been prescribed Kinecteen but can't manage to take the tablets. 😭
We've tried so many different things, practice with tic tacs etc but his PDA gets in the way and makes it hard for him to persevere. It doesn't help of course that it's first thing in the morning which is already a demand-heavy period.

Ugh. It's fine, I'm not asking for advice just needed to rant a bit! I just want to yell just swallow the bloody thing! 😂 Obviously I won't do that!

Anyway, we are down to the last three school days now so will have to see if he can get up early a bit during the holidays so we can try to get the dose right for September. 🤷🏻‍♀️

If he ever manages to bloody swallow one!

@klayton amazing news that the meds have worked so well for your ds. It’s so wonderful to see the effects and they really can be very effective. As @WesternEasterner says it might be worth raising your evenings with the consultant and asking about a small top up. We top up as well as a post med ‘crash’ was making our son tearful mid afternoon and it has really reduced the come down.

@Freshstarts22 that’s great news that evenings are better and also about the donut diet!! Needs must sometimes and keeping the weight up is obviously important.

@ColonelSpondleClagnut In case you want hope, if you read the old thread there were a few people who had struggles for weeks with total refusal and then their kids did swallow the tablet and start in the end. My ds has asd as well so I get the demand avoidant side of things.

Sounds like you are holding back your urges to shout very well! In some ways starting in the summer might be better as well - you can keep side effects out of the school week and hopefully get some titrations done. Plus summer mornings might be less intense. Will keep my fingers crossed you can start soon.

There are some inventive methods on there both for crushable and non crushable meds (depending on what dr advised). Also swallowing training starting smaller than tic tac eg hundred and thousands or asking prescribing dr to swap to a crushable if yours is not crushable. @NurseP I believe even got permission to give hers in a small spoon of calpol initially.

Good luck and feel free to rant here any time!

Just realised the last bit of my post makes not much sense. Inventive methods are on the old thread!

Linked in the op on this thread

Ah thanks for that! I'll definitely check thatchers out.
Ive also discovered that there's an extended release chewable tablet and also a liquid so going to see if either of these can be prescribed.

One of the issues is that because he's never taken the meds, he doesn't know if they'll make any difference so can't see the point in trying! I'm hoping if we can get them into him somehow he'll have such an amazing benefit from them, he'll be more motivated to try with the tablets again 😬 Well, I can hope anyway!

We open a capsule and put the granules on a spoon with calpol. He swallows the 5 mg immediate release tablet and his melatonin fine. Its just that he will not swallow the capsule even though he can!

Morning all, thought I would report back on our two week summer break.

For context our private paed didn’t mind us not having breaks as we felt he wouldn’t cope at all well and he was in a very tricky place when he started the meds. So we had none for the first year, other than the occasional accidentally where we forgot to get him to take it!

When we saw the NHS paed in Feb she said breaks were a must due to his lack of weight gain and we did a short one every half term now (3 days each in Feb, June), a whole week at Easter and now 2 weeks in the summer and we stopped topping up at weekends and often didn’t take the morning med on a Saturday either. So in the 5 months since Feb he’s had a total of a month off minimum (though not all in one go).

It’s fair to say ds finds the breaks very difficult and I wouldn’t say having more of them has made the breaks get easier either. We find frequent tearfulness and low mood plus mood swings coming off and then similar going back on, with the addition of out of character pretty angry times, extreme tiredness and sleep difficulties now going back on after two weeks.

I am thinking ahead to High School coming up in September and thinking we will maybe avoid breaks for the first term certainly before Christmas to give him a chance to settle. I would be really interested to hear others’ experiences.

Does anyone else have any experience of med breaks being so hard? Any tips? Anyone gone through secondary transfer on meds?

@ColonelSpondleClagnut any movement on the meds? Sending you lots of vibes for him suddenly to click with taking it.

@klayton how are evenings going now and did you get anywhere with exploring a top up or did you find things evened out?

@Munchies7 @ANonnyMice how are things now?

@Hopender I’m so sorry to say I somehow missed your post a while back asking about Amoxetine. I have no experience with non stimulants but hopefully someone on here will do. how are things going now and did you decide to switch?

Hope everyone else is well. I’m sure lots are away on summer holidays but look forward to seeing updates in due course!!

Thanks, we are currently waiting to hear back from the clinic to see if they can issue a prescription for either chewy or liquid meds so we'll see if there's any movement on that next week.
We will keep trying the tablets but can only do that if he's got up early enough and at 13 that's getting rarer in the holidays!
Also doing swallow training here and there with small sweets anyway, as it'd be useful if he could take regular paracetamol etc.

Hi everyone.

We upped my son to 50 4 days ago. The first day he said he felt a but sick in the morning. He seems to have been angrier generally. Today he said he feels funny, like energised but not, he said he feels funny (currently lunch time so he is eating for tye first time since breakfast when he took the meds).

Do you think 50 is too much. Or are these settling down to the new dose issues that will pass.

Is anger common and does it remain.

Sorry to hear it's so tricky Miss H I would definitely agree with you on trying to avoid during the first term - I hope this 2 weeks at least helps on the weight.

I've found every step up had some issues - from 20 to 30 he had a big meltdown at school and came home a bit angry in the evenings. Each time it's taken weeks to settle down - so I'd probably give it a few weeks and see.

Very up and down here over the last few weeks of term and first weeks of the holidays but he's seeming calmer this week - it's the change of routine for us I think.

Hi everyone. We have just started on Ritalin 10mg modified release last week. When did you start to notice it working and side effects?

My son is more quiet, but we are still having issues with impulse control. I'm not sure if he needs it increasing; he's 125 cm and 28 kg.

Also wanted to add that DS states his brain still feels too tight.

Also I just saw a post stating they give theirs in calpol. I do this too!

I didn't personally notice much difference on 10 but the school said they did - it was 20 to 30 that seemed to help.