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!

Hi @NotLeavingWithoutTheSpringRolls welcome to the thread! I see you’ve already had a reply from @OhCrumbsWhereNow, who is one of a lot of great people on here with parental experience of meds who will be able to offer their thoughts.

I can absolutely recommend a titration service. I will pm you the details of who we used.

On more medical info, the thing to be aware of is that at least some private clinicians (I don’t know if all) won’t want to proceed on the basis of decision making by another private clinician, so they might want to repeat some aspects eg more questionnaires etc. I know one clinician I used proceeds in that way (we have used private providers and I will send you details). They are also likely to want blood pressure, heart rate, height, weight and some ask for blood tests depending on medical history.

On moving back to NHS, that depends on your area. When we did it with ds in 2022 it was very easy and we got diagnosed and then straight away asked our GP for a referral to NHS consultant for medication. If you haven’t done this yet it would probably be well worth doing this now.

While we waited for the consultant appointment to come through we got to the correct dose with our private provider (took 6 months for us). For this time period we paid private consultant fees for each review appointment and also for the meds on private prescription - it’s on the threads but from memory was £60+ per box.

Once we were on the final dose the private provider wrote to GP to ask for shared care which they accepted. GP prescribed so drug cost fell away and we only needed 6 monthly private appointments so consultant costs also reduced. The consultant referral then came through for NHS and we then switched completely and are now seen 100% NHS.

Things to be aware of is that the wait to get into NHS consultant clinic is very long - in our area now 2-3 years and also that the GP shared care has fallen away in some areas where some GPs are now refusing to do it. This is very area specific though so might be worth checking the position in your area.

I have a ds who is a similar age and has been on the meds a few years as he couldn’t cope in late primary and was in crisis. At this stage we didn’t know if he was going to be able to continue in ms school. He had suddenly hit a wall and just couldn’t manage any more. The medication has been absolutely life changing for him and has made the difference between him managing school and not and he’s now ok in secondary in Year 8.

@MissHavershamReturns thanks, good to hear that increasing the dose helped, crossing my fingers this works for DS. The worksheet issues are in the morning annoyingly, although he did his hobby today and got an amazing report (but it's only 90 mins long) so maybe he does need the dosage increasing.

The appointment was fine thank you @MissHavershamReturns , but still no contact from his doctor about changing the dose. I’ll have to start chasing them tomorrow!

We’re back to things being almost as difficult as before meds started, so I’m trying to get hold of the consultant to up the dose.

There had been such a phenomenal change when he started at 10mg and about 3 weeks ago it became very noticeable that things were regressing.

discussed with the consultant who wouldn’t change the dose as she felt it could be related to Christmas excitement and change in routine over school holidays etc. but now he’s been back in school routine a couple of weeks, and things are continuing to get worse.

really hoping I’ll get a return call today to discuss.

Ah sorry to hear that coffeecake

Well, the consultant has agreed to increase the dose so let’s see if we can get him back on track.

it’s just so hard seeing how much better things were for him, only for it to slip away again. I can see he finds it upsetting.

Ah that's great coffee, fingers crossed that helps. Has it been long since he started?

I'm hoping to increase DS' dose too as the afternoon comedown is insane, he's so angry and emotional. He's been acing his exams the last few days which is great but post 3pm he's just a complete nightmare. And then he's so wired before bed. It's just the beginning still for us so hoping this is also just thr settling in phase!

He’s in his 3rd month so fairly early days.

First few days were quite up and down with very disrupted sleep etc. but overall it was quite a transformation.

then suddenly it was as if it became ineffective almost overnight!

but yes, we get an awful crash after school, he is so violent and angry. Hoping this might help a bit. At least he can manage school now as he was on the verge of exclusion and he’s only in Y1.

fingers crossed you get the dose adjustment and it helps your DS.

That's good that it's working well at school Coffee, are you now doing the 10mg twice a day?

We are on day 15, I've got a titration appt next week but unsure whether to ask to bring it forward to asap as DS has been SO awful on the afternoons i think he definitely needs it adjusting, although maybe it's too early? Im not sure whether another week it ill be settled or if he just needs the dose upping.

No it’s now 20mg in the morning slow release (equasym XL) so still a potential crash after school.

I requested the change by email a bit before our review was due as I felt it really couldn’t wait. I listed bullet points of the changes and the impact. Then just received an email saying a new prescription was ready and that we would discuss at the scheduled review.

always worth raising it as they can advise. Last time I asked they said no but this time agreed.

Ah good idea, i will email! Thanks

Hi everyone just popping on for an update, it’s been a while. DS, now 7, is on 10mg methylphenidate XL plus 5mg IR in the morning. Dr suggested increasing to 20mg, the max for his weight but I wanted to go a bit slower. I took him off the meds for Xmas hols for a break and he was fine, it’s really just school he can’t cope with. Starting again this term hasn’t been great though. Attention less and impulsivity more than it had been. Then I forgot the meds one morning this week and they called me in to give them as he was all over the place, but it seems he stayed totally dysregulated all day, they didn’t really take effect. He was lashing out randomly at kids and adults 😰. Think we’ll have to try for 20mg but I am worried about long term side effects on growth starting so young. Luckily sleep and appetite manageable so far.

Sorry to hear that xx

Yes hard to balance with side effects etc. Do you take breaks on thr weekend? It sounds like he might benefit from the 20mg as or maybe it's his body getting used to the medicine after the break.

Does he have the IR first thing and then the XL at lunch? My DS is titrating and I'm wondering if something like this might be good, (he's on 10mg XL in thr am atm)

I give him a bit on Saturday as otherwise he can’t really cope with his swimming lesson. Off on Sunday. I already know there are certain summer holidays where he’ll need them and tbh holiday clubs when I’m working so worrying there won’t be many opportunities for breaks.
He has both the 5mg IR and the 10mg XL in the morning. 5mg doesn’t come in xl, so the thinking was he has the full 15ml in the morning when school does most formal lessons, then once that’s worn off after 4 hours he has a chance of managing some lunch, and still has 10mg for the afternoon and sleep less chance of being affected. So this could all change moving up to 20mg!

Hi Everyone, been a few weeks since I’ve had chance to update.

My DS, just about to turn 7, started on Medikinet 10mg start on November and Tritrated up to 20mg XL which he takes in the morning. After a few mild side effects settled into it well and it’s making a massive difference and he’s progressing so well at school and also in activities as he can now actually listen to what supposed to be doing!!!

Going up to 20mg massively impacted his appetite which was a major cause of stress. Thanks so much to @MissHavershamReturns and everyone who left advice on this, I read them all and we got into a better routine over Christmas and although he’s not eating much during the day he’s getting enough calories over the day as a whole. He hasn’t actually lost any weight since he started so his prescriber are happy with this just need to keep an eye on it.

Out of the blue before Christmas he stopped being able to get to sleep and taking up to 4hrs!!! This was counteracting the positive effects of the meds in the morning as he as so tired and struggling to stay awake at school, we’ve been prescribed 1mg melatonin and made a massive difference as he’s now able to fall asleep within 45mins and get a full nights sleep.

The only ongoing negative is he’s quite irritable once meds wear off in the day which tends to be between 4-5pm. This is fine when he’s at home as we give him activities to unwind, he’s not angry or anything. However makes it impossible for after school activities. We’ve now been prescribed instant release too up however I’m worried about all this medication like other have posted but he will only have the top up 1-2 days per week.

On a slight tangent I’m about to start up own Titration journey this coming week. Since my son started showing adhd traits at a young age and looking into it was obvious to me I also have it but I wasn’t keen on medication so didn’t pursue it. However seeing how much the meds are helping my son I thought why not try it. It’s hard to explain but I feel quite embarrassed no haven’t told anyone in real life about my diagnosis or starting medication other than my husband! I know AD strongly runs in families so I’m sure I’m not the only one in this bot.

@SquashSqueezee this is really interesting as our DS are the same age and I’m thinking we’ll prob need to go up to 20mg too. ATM he’s on 15, 5mg IR and 10mg XL and I think this is why we’ve avoided the crash and sleep issues as they’re wearing off gradually.
That’s great you’re going start meds too, I know quite a few mums like you and it’s life changing. I’ve met a few in ADHD parenting courses where everyone is v open. I’m sure you’ll find lots on here and IRL soon too. Good luck!

After our first follow up appt we are going to try and continue with 20mg medikinet XL until we get a bit more feedback from her LA tutor. It's hard because she isn't currently in school.

She has also been prescribed melatonin 2mg so hoping this will help her doze off before 1am.

She is becoming reluctant to take the medicine though, we currently empty it out on to a spoonful of yoghurt but this isn't working as well now.

Anyone have any better ideas? She won't try and swallow it whole 🥲

Hello all. Haven't updated in a while. DS (13) started meds in September (term time only).

There has been a big improvement in his performance at school; his attendance has gone up; he gets out of the car and goes into school much happier. However DS maintains the medication makes no difference and as we started at the beginning of the school year he has new teachers who haven't seen him unmedicated.

There have been some negative effects - mainly loss of appetite and huge crash after school where he has a very low mood.

We've agreed with school and the prescriber to do a two week trial off meds (starting tomorrow). The SENDCO has passed information to all his teachers about what to look for and hopefully DS will be able to tell if school is harder off meds.

Will report back!

I haven’t been able to update for a while, but DS (having started on 5mg Medikinet on New Year’s Day, no effect unsurprisingly given the low dose) is now on 10mg Medikinet. Perhaps minor positives such as less defiance but it’s only the quick release or whatever it’s called anyway, so it literally peaks about an hour or so after he takes it and is completely gone within a few short hours

the doctor said once we’ve found the right dose, he will switch to the slow release to last him a whole school day. Is that normal? It’s hard to know if we’re finding the right dose given the one he’s on now wears off so quickly!

@impossibleimposter my DS is on slow release but started on it, tbf it does last the whole day but the crash has been quite intense, i was actually wondering jf 2 x quick release would have been better.

@macap i find nutella is a winner, mixed in with chocolate is hard to resist!

@SquashSqueezee thats great youre starting too, i hope it really helps. ds' dr asked me if i had considered meds too but i would need ds settled first.

My 6yo DS is on week 3 now, crash wasnt too bad yesterday but i just let him watch tv all evening, he hasnt done any homework all month which isnt great but im trying the path if least resustance. He also went to sleep at 2130 vs 2300 so im taking that small win!

A crash is worrying!

I’ve definitely noticed some positives around 20 minutes after he takes his 10mg in the morning. Less defiance, more awareness of time. Less antagonistic behaviour.

I’m not sure whether to suggest 10mg is right and we switch to slow release, or whether to push to try 15mg. He’s 9.

15mg might be good, im going to ask my dr about it.

Actually ds is ok today so maybe slow release is fine after settling in? Hes not ever really that into hwk lol

Hi All.....catching up after a long absence! Need a bit of advice...DS doing well on 20mg Medikinet XL. Dose not increased as his weight is static, but has gotten almost 4cm taller so they were happy to cw meds. They have given 5mg Medikinet 'top up' but no clear instructions on timing....what time do you guys give top ups at? TY

We only use top ups if DD has something specific in the evening that needs focus.

Her meds tend to wear off around 5-6pm, and she will take the top up when she starts to get fidgety. So no specific time, but based on behaviour.

The fidgetiness is very annoying so it's relatively easy to spot.

My son also on 20mg Medikinet XL and same issues with no weight gain. We’ve got 5mg too up to give as and when needed for evening activities, it’s instant release so wears off before bedtime. Give top up at around 4:30pm which is when the 20mg has typically worn off.