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!

@LoveMyADHD they do have a good team but there is going to be a big lot of retirements and role changes over the summer so we haven’t been able to meet the senco at all, which doesn’t help.

@MissHavershamReturns I’m sure if his friends go to same school it ll be fine… do they?

i have similar worries especially around “getting lost” and “losing his stuff” but I do think they ll need the big boys school and they ll just have to learn

are you changing to concerta next year ? Or staying on Medikinet?

we met head of senco and she told me ALL her Adhd kids go for top up at 3pm even really small (5mg) but it’s a given no way around it! We don’t do this now but no way around this now 😂

@LoveMyADHD the close friendship group are all going to that school which is good. That’s interesting about your SENCO!

We can maybe support each other in Sept! If anyone else wants to join the Year 7 posting on here please feel free

Don’t worry my love, we ll go through this together in September 😍

also thank you for your amazing weight gain advice, he’s put on 2 kg in a week can’t thank you enough 😍

Ooh @LoveMyADHD this is PHENOMENAL!!!! I’m so pleased for you!!

Thanks for the support which really means a lot @LoveMyADHD 😍

Also thank you to everyone on this thread as you’ve all been a rock since we got diagnosed!

You did it all so thank YOU!!!!!

are you continuing with same dose of Medikinet in September ? No meds change at all?

Sticking with 30 as weight is such a struggle

Another very buzzy morning today - flapping his blanket running around screaming look at my wings (not an issue in itself but just like a total bottle of pop)

Over the past few weeks he's been asked to leave a club over pushing another kid, got into a huge scrape at school cried through sports day - the wheels have really come off the cart. & got into a bad situation at another club and so I'm only sending to school atm until things calm down a bit it's all too much.

It's a hard time of year I think isn't it, just the build up/ excitement all the routines gone and to cap it all he struggles to sleep and not even the melatonin seemed to help last week.

I know it'll last a week maybe two then things will die down, but it's what will have happened when he's on it, the damage to his self esteem with more incidents etc.

Not easy this.

I would be really keen to hear how your year 7s get on. We will be there but not for another year. I hope they all get through these next few weeks ok

My DS has gone for his secondary school settling in day today. Big difference from a year group of 30 to 300!! He seems ok about it all so far, time will tell at the end of today and also when he gets his sat results. I’m not bothered about them, but he is and he sees it as failing…..so I’m crossing my fingers for that day. He’s had a few bumpy evenings recently, but there is such a mental overload on them right now with all the changes happening.

@MissHavershamReturns thank you for replying! She having a sensory assessment with an OT at the moment so hoping to have a report soon to feed into other assessments down the line. It's just so difficult that there doesn't seem to be any help for the sensory side of things!

Thinking of recent incidents (calmer this week) and potential "overload" can I ask, what after school hobbies or interests yours do? And if you think it helps or makes them overloaded at times?

My DS is involved in scouting and a few other bits, and to be honest these can cause additional stress as he's not only having to hold it together in school but outside too. The trouble is he loves these things and his siblings do things, and it feels harsh to say no.

I was just wondering if anyone had tried alternatives to Atomoxetine. It works quite well for my son and has improved his time in the classroom massively but upsets his tummy and makes him sick even after taking it for 8 months. It has also allowed him to learn to read and reduced his anxiety which he absolutely needs. He is autistic too. Thank you!

We had the rv with the Dr. She is not worried about his weight and his BP is fine. She could see how much he had progressed with his speech and behaviour so pretty happy with that. I asked about meds breaks and she said not to worry about it.

Any advice about weight and appetite? My ds has been on meds since April I think, started on 10mg, moved up to 20 lost month and weight is very slowly dropping. He’s mostly still eating breakfast, which is just dry cereal as he’s so fussy and I don’t have time to cook, and dinner. Again, very fussy so not the most nutritious dinners. He’s often skipping lunch at school.
Before meds he would be constantly hungry, so eating 3 meals and lots of snacks in between.
On the weekends I can usually persuade him to eat lunch, but he’s not having any snacks really and just isn’t interested.

Hi, my 7 year old is possibly going to start on adhd meds, me and my partner haven't decided yet, paediatrician has said she can have them if that's what we want. Can anyone give me some feedback on if and how it helped their child? Side effects etc? Thanks x

@GG1986 I would recommend having a read through this thread.
We started them a couple of months ago. It’s been fine, no real side effects but appetite is now becoming an issue. Definite improvements but it’s definitely it been a magic fix for us. Getting ready for school is less stressful, and he’s able to hold a conversation better. Haven’t had much feedback from school but he seems to be doing better.

Thank you, I will have a read through x

@GG1986 welcome to the thread. I would recommend reading the book I linked in the op as it is very easy and very reassuring to read.

Every medication journey is personal and different but if you read through the original thread I’ve linked in the op to this one many of us have shared our medication journeys and you can see that for lots of us it has overall been a positive experience. Good luck!!

@Freshstarts22 it sounds as though things have been going much better now on the medication. I’m really happy to hear that and just amazing how effective the meds often seem to be.

@Freshstarts22 posted too soon there. If you look at the op on this thread I think I’ve linked a useful leaflet about meds and appetite. We’ve had issues with weight since the end of December and if you look back at the last pages on the first thread (especially Feb on) then you will see a fair amount on what I tried and what did and didn’t work for us. Basically for us the key has been calorie counting an enormous breakfast! Then massive puddings and getting lots of crisps eaten

Thank you so much x

Hello all, haven't posted for a while as we've been busy with end of term and then being away (we're in Scotland so our term has already finished and we're in the middle of summer holidays!)

The good news for us is that DS got his best ever school report. He's P5 (so roughly English Year 4), until now every report has shown that his actual work was mostly 'Progressing' (ie not at target) with a few non-core subjects at 'Good'. This year all the 'Progressing' ones have moved up to 'Good' and all the 'Good' ones up to 'Very Good'. He's a bright boy but until now there has been such a huge gap between his seeming intelligence, and the actual results at school. It's so great seeing the gap narrow a bit.

He only started medication at Easter, so I don't think it's all due to that. I think also having a teacher who made appropriate adjustments for him helped. Also I think the diagnosis itself helped him psychologically, and probably motivated him to try more at school.

On the other hand, he's definitely been very 'ADHD' for the last few weeks, even on the medication. The lack of routine over summer really doesn't help him! And while he's just about sleeping ok with the Melatonin, his appetite isn't great. When term starts again it's going to be a real dilemma whether we put him up to 30mg and have to deal with great sleep and appetite issues, or just stay at 20mg. I know some of us have talked on these threads about how it is such a dilemma medicating your child in this way. I love seeing how much more confidence he has in himself about school, but hate that his comes at the cost of needing medication to get to sleep...

Hi All,

Just coming to join this thread - have read through the whole of the last one which was really useful. And bought the amazing Peter Hill's book before we even got as far as the assessment!

DD 14 was diagnosed two weeks ago - primarily ADD but elements of hyperactivity/impulsivity but not enough for Combined. Which I'm pretty much in agreement with.

I put her on melatonin gummies that I get online from the US about 6 months that work brilliantly even at just 1mg - I confessed all to the Dr and he seemed quite happy with that... or at least I didn't get ticked off and he didn't say to stop taking them.

She started on 5mg methylphenidate twice a day last week and went up to 10mg today. Idea is to do that till end of this term and then move to slow release in the autumn.

So far it's been near miraculous - and I only wish I'd got her diagnosed years ago. DD is so happy - says she doesn't think the dose is strong enough yet though. No side effects on them so far bar reduced appetite (she's very slim anyway so I'm stocking up on high calorie snacks - and trying not to eat them myself!)

Dr asked for her to take a break at weekends and school holidays, and so she didn't take them this weekend.

It was really noticeable how fast the problems returned - major headaches all weekend, off the walls hyper on Saturday evening. Teenage dramas with friends that she had been handling really well all week suddenly became hugely anxiety inducing and spiralled in her mind. We were very, very tempted just to hand her the pills by Sunday morning. Having not rowed with her all week (first time ever) we had a bust up last night.

This evening everything is great again after a day at school back on the meds.

She says feels like she's finally met the real her on them. Focus massively up at school. No negative impacts on musical ability or creativity (the opposite in fact) and she can still hyperfocus.

She's asking me if she can just take them all the time. Obviously I would be totally in favour having seen the difference, but I'm happy to deal with non-medicated DD if that is in her best interests long-term.

Has anyone else come across the headaches while on a break? Are these likely to stop?

Might the rebound weekend ADHD symptoms lessen if she's on a higher dose during the week?