Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread for us to support and encourage each other in Medication journeys for our children, right from considering medication for your dc and the earliest days of trying the medication for the first time. Lots of information here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

All information on here is from a parent experience perspective. I am definitely not an hcp, just a mum who is happy to share my family’s ultimately positive experience with the medication, through ups and downs. Others posting here are also just doing so as parent ‘experts by experience’.

That said, the parent knowledge on here is phenomenal and there is help on 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.

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.

As parents of children with special needs we can sometimes need a bit of support ourselves and I found this book very practical and reassuring on self-care and how to manage SN parenting. The book I wish I had had in the earliest days of having an ND child: Joanna Griffin, ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’.

This is thread 3 and thread 2 can be found here: https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others. 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 these are good places to read back to see a range of ways that meds journeys can unfold.

I’m sure thread 3 will be the best yet, so welcome one and all!

I think I jinxed myself because at bedtime she was a little horror. Tried to start her paint by numbers at 10.30. 😆 was not impressed when I said it was time for bed and not painting!

We have our review appt on the 14th Jan.

I also got her QBCheck results back today and they were interesting. Totally confirms what we think/know!

We've also been on 20mg Medikinet for the past week. So far, DS (12) is tolerating it much better than the metyrol we started on when the local chemist couldn't get Medikinet. Still some appetite reduction but no painful muscle aches. Also, alas, no magic change in behaviour. I'm guessing we might increase up to 30mg at our next med review in two weeks' time. Maybe that will be when the magic begins?

DS is not looking forward to going back to school, so I'm expecting a rocky week to come.

No review booked in as such @MissHavershamReturns but he has his Observations appointment on Tuesday so I will raise and be pushy. The situation in our health board is dire and everything has been a battle which is frustrating!

My Ds (6) is on day 2 of meflinate xl 10mg, in not sure I've noticed a change, as it's a low dose might I see more change next week?

I

What are you looking for in terms of change?

We had instant and visible improvement from the very first dose (10mg instant release Tranquilyn) and each increase has been better - now on 30mg XR Equasym which feels about right.

For us, it stopped the fidgeting, stopped the endless and persistent single-track arguments, made DD much more balanced and rational, and a big change in her ability to focus on things she's not overly keen on.

On day 3 of the initial dose she had a class with a teacher she only sees every 6 weeks and he turned round to me after the first half hour and asked if aliens had replaced her as she was so focused, calm and cooperative.

It has not helped much with organisation and executive function and she's still a ball of energy. It's just more liveable with. (DD was just turned 14 when she started on the meds).

I think probably focus and impulsiveness, the big test will be school next week i suppose. But he seems how he's been all holiday really .__

You didn’t ask me but useful to document! For us improvements wise, DS is EXTREMELY defiant/ODD, so hoping for that to improve. His emotional regulation is also very poor,
huge over reactions and very quick to anger/frustrate/“it’s the end of the world”. His executive function is also very poor, but he has the added fun of DCD.

I actually think I have seen a difference today, he was bouncing off the walls before I gave him the stuff. Then he spent the afternoon doing lego.

Only problem is he hasn't eaten any lunch and doesn't want any snacks. He's very thin naturally so a bit worried about weight loss.

We have a lot of the over-dramatic 'world is ending' stuff when DD not on the meds. She's much more rational on them.

I've found I can tell very easily when she's forgotten to take them as it ramps up very fast.

No appetite when the meds are working is pretty normal. But there is often a period of intense hunger when they wear off in the afternoon/early evening.

We put off getting the diagnosis because DD had growth issues and a very reduced appetite as a child and didn't want to compound or increase issues - I have mixed views on whether that was a good plan or not now, but we had no crystal ball.

I buy in a lot of high calorie snack bars for breakfasts/after school so there is always something quick and easy available that helps make up the lost calories.

Our DS seems to be less hungry on meds too, but that's actually been a good thing for us because it's helped control his major sugar cravings, which were becoming out of control to be honest.
DS is just coming to the end of three weeks on 20mg Medikiner XL. For the first few days, we didn't think it was a high enough dose, but no are worried that it's too much! For the past ten days or so, he's been very withdrawn and quiet when on the meds - hasn't wanted to join in at birthday parties or softplay at all. Has anyone else experienced this?

Thanks @MissHavershamReturns after our tricky experiences with stimulants we switched to Strattera. However, DS point blank refuses to take it. It is in liquid form and he says that the taste is disgusting. I have tried mixing it in food and offering all sorts of treats after he takes it. But over 2 weeks after it was prescribed he still has yet to have a single dose. I have left a message with LD nurse ..

We have just moved up to 30 mg equsym xl from 20 for my 11year old son. He is hyper crazy from about 5pm onwards and not sure the increase has had much effect. He was running around screaming and hyper and then broke down crying like he was completely overwhelmed. So upsetting to see him like this. I’m hoping it will settle after a few days. He is still not eating very well at all. I wonder whether the medication is worth it sometimes

Thank you so much for asking, @MissHavershamReturns

We had an absolutely lovely Christmas, DD is so different when school pressure isn't there. Wish it had lasted longer! Still on the fence about the new meds, it felt like Medikinet was easier on her stomach. Got to do the "wait and see" approach I think!

Hope you all had a decent break and that your segues back into school are as smooth as possible.

I've noticed DS gets very angry during the "come down", then once that passes he's OK again.

Does this get better over time? I feel his mental planning is getting better too but I feel nervous for the 4pm comedown. Only 1 week in, he's on 10mg - does this usually get increased at the next titration appt?

Hi, newbie here 👋
My son is 12 and has recently been diagnosed with ADHD - originally was via right to choose but ended up paying privately as it was taking so long. He’s having a terrible time at school and had ever since starting secondary which he just can’t seem to cope with. I hadn’t felt medication was necessary until relatively recently but he’s on a very negative spiral at the moment and needs a lot more help than I’d realised from his experiences at primary. So, we’re looking into getting him medication which we would prefer to organise privately as otherwise the wait will be too long. Was wondering if anyone could help with some questions:

1. Can anyone recommend a service that will provide a titration service for children?
2. He has a diagnosis but will they need any more information before starting e.g. medical info?
3. Do I have to stay private forever or will it be straightforward to transfer to our GP? (They say they can do shared care but wondering how that works in practice…)

Thanks x

Seems to take about a month for it to stop with DD whenever she ups the dose - it's quite gradual. Initially with dose increases, that couple of hours when they wear off is pretty challenging.

Nowadays it's more the case that I can tell if she forgot to take her meds as she's much more volatile and argumentative.

1. can't help with that as our provider only does the whole diagnosis/meds thing.

2. they generally want full knowledge of medical history, plus heart info, BP, weight/height etc as there can be issues with the meds with certain conditions.

3. depends. We have shared care, but have to see private provider every 6 months for monitoring and any tweaks to medication, and shared care only kicks in once dose titration is done. For us that was after around 18 months. So yes we have to stay private forever, but the meds can move to NHS. We had to provide a letter from GP agreeing to shared care before initial appointment as a lot won't do it.

Ohcrumbs - thanks for that, this makes me feel very positive! Just need to power through lol.

Disappointingly DS' school feel he's a bit spaced out so I assume this means he will need a higher dosage at the next appt. He is also losing over 2 hrs of sleep at night as well atm which isn't helping. I feel a but sad about that as it's made such a difference at home, I just want to see it at school too, they said his work has dropped by about 1/3 this week as he's not paying attention to thr teachers. But at home he was doing worksheets which is a first!

Is he struggling to get to sleep?

DD takes melatonin in order to drop off. She's a lot worse if she forgets that and has messed up sleep.

@OhCrumbsWhereNow how do you find the melantonin? We are having a nightmare getting our DS to sleep since he's started meds? Usually goes to bed around 8:30, and still awake until 11. Really reluctant to start melantonin but feel like we've tried all of the usual sleep advice and he's just wired!

ohcrumbs no he's not on melatonin but I will email his Dr and ask as he's missing an extra 2 + hrs sleep a day

I spoke to his teacher this am and she said that he stares into thr playground more than he did and doesn't join in with morning movement anymore. I'll see his Dr in early Feb so maybe they will change the medication. It's hard as I don't want him to fall behind at school whilst we trial different dosages Esp as he has to be ready for junior school in Sept. X

@macap how are things now? It’s interesting that you did the QB - if I’m right I think NICE now recognise it as a tool. My dc never did QB and I would have been interested to see what it said.

@chillberry for us there was no dramatic change until we got to 30, but I know it’s different for every child and very age/weight dependent on what dose will be the final one. Keep us posted on what happens at the review

@impossibleimposter the battling is just infuriating isn’t it and I’m so sorry it has been such a struggle for you so far. My dc is just below the threshold for DCD diagnosis and has very significant difficulties with coordination and movement as well. How did the observations appointment go?

@mrburnshound we didn’t get much dramatic change at 10. We had the same disappointing experience you did and the school said almost no improvement at all at 10, where we had seen more concentration at home. BUT as we increased the dose they did see a massive difference, which was good and so if your dose does go up you might see more improvements. Mine was also very thin when we started and I had to really battle to keep the weight on him. It might well be worth starting to take steps on that now - big breakfast, add an extra meal just before bed, milky drinks etc. We also had a lot of anger at the rebound stage and we were given a top up to smooth that off. It might be worth asking the prescribing doctor about this if you are still seeing the anger symptoms now. Did they say if they are seeing the worksheet issues morning or afternoon? I’m just wondering if that’s also possibly a rebound issue?

@needaname19 we did experience some stuff a bit like you describe with ds. He’s basically grown into the dose now but initially 30 seemed a lot for him and he was quite suppressed and inward on it. The thing is for him it gave him the ability to cope in ms school where previously he wasn’t and to stay in class and to actually complete his work. At times it felt like it might not be ideal but it was the best choice. Now a few years later the dose is the same but because his weight has increased so much he’s now completely himself on the meds, just calmer.

@dimples that sounds really tricky with taking the medication - so sorry to hear that. Did the nurse come back to you and how are things now?

@GC12345 the side effects can be so worrying initially and I know for some people they don’t settle but for us while the first few days after each increase were awful those effects (not quite the same as what you are seeing, but extreme emotions when 20 was fully absorbed and also extreme hyperactivity when it wore off) did settle. How are things now?

@scattery so pleased you had a lovely Christmas and dd was great in the break. School is so hard for many of our little people and I know it is at the heart of a lot of stress for my ds. He is also very different in the holidays. It is so difficult making decisions about meds isn’t it? We were offered a top up and a concerta prescription in early days on medikinet when we were having extreme medication rebound. We took the top up and the private consultant said to switch to concerta if that didn’t sort things. We didn’t switch and stuck to Medikinet. I still don’t know if that was the right decision but ds is doing so much better on meds compared with not being on them. How are things after the first week back at school?

@needaname19 so sorry to hear about the sleep difficulties. We haven’t tried melatonin but I know a family with a dd who have and found it life changing. The total sleep their dad was getting each night was dramatically improved by melatonin and finally she could drop off reliably at a reasonable time. Hopefully your consultant will be able to help on this.

@OhCrumbsWhereNow that’s very interesting about that comment from that teacher. Ds started in primary so current secondary school have never seen him unmediated and in the summer holidays when he’s on a break med the difference is VERY stark.