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!

@SquashSqueezee what a wonderful moment!! When our little ones have struggled at times those times of success are just golden, aren’t they?!

@OhCrumbsWhereNow agree totally with you here - deep breaths help and my oh and I have a code word we use if one of us is about to go bananas and no questions asked that means the adult can just walk out. Bit like an adult version of the kids’ exit card.

@CoffeeCakeAndALattePlease good luck with starting meds this weekend and do keep us posted as often as you would like to. I have learned so much from other people here through our journey and luckily my dc does not have any major meds side effects, so as pp have said we found it scary but fortunately for us nothing major materialised.

@chillberry how are things now with the 10mg? It sounds like quite a rollercoaster for you guys over the past few weeks and I will be sending you vibes for a calmer few weeks to come.

@CompluterSaysNo how are things now? Low mood was definitely a huge issue for us at first. I hope that is settling a bit for you now and that you have a good weekend.

@Neurospicythree I have a dc on medikinet 20 and we’ve had to have it prescribed as 10s, and just to take two tens each time. The chemist told me there are major issues with 20s and 30s at the moment, but none with 10s, as @noideaoffuturenow says.

@TinselTarTars evening clubs can be a bit tricky but once my dc was settled on meds his evening cubs etc were ok. I hope the club you’ve got booked in works ok.

@dimples76 welcome to the thread! Please do keep posting as often as you would like to. My dad also has autism and ADHD. I really hope this works for you in terms of reducing the violence. How has it gone for the first week of medication? We did find there was an appetite decrease and increasing breakfasts among other things seemed to help so might be worth doing that from the start if he is petite, just as a thought. I hope the sleep has not been too affected after starting.

A quick wave to @Hels20 Hope all good with you?

Glad to have found this thread!
Hoping someone might be able to help or have suggestions
I've been taking Atomoxetine since the start of the year (couldn't tollerate methylphenidate on its own at high enough dose for it to be beneficial)
A couple of months ago the pharmacy issued thr Atomoxetine as a different brand, and I've been 'not quite right' since then.
Feels like I can tell I've taken something, I'm getting more energy slumps/brain fog, it's just not working as well and my concentration is down and my thoughts a bit scattered/speeded up again.
I've seen GP and got a prescription so I can try to track down a pharmacy woth the previous brand, but no luck so far...

I'm aware I might need a review and a dose change, hut want to rule thisbin/out first!
I take 40mg twice a day (side effects too sever when taken at once).
Thanks!

Ah, just seen this is for parents of children taking medication.
Any ideas still welcome if you have time x

Thanks @MissMissHavershamReturns. After the first week of meds unfortunately the only difference I can discern is disrupted sleep. It's been quite a bad week behaviour wise, culminating with DS smashing his ipad up in a rage yesterday. I was not really expecting the meds to have much effect on that kind of violence as it seems very out of control/autistic meltdown behaviour. However, the more frequent violence appears more targeted and I believe stems more from ADHD as it feels more like dopamine seeking behaviour- it was that I had hoped might improve.

Obviously it is very early days and perhaps it's not the right dose or drug. Feeling a bit sorry for myself now as after a long fight DS moved to special school in September. I hope a more appropriate school and ADHD meds would improve things for us all. I am very conscious that I am being impatient but after all the waiting I was desparately hoping for a calmer home life, especially for DD5.

@SquashSqueezee that sounds like a great achievement. DS started 1:1 lessons in September and his teacher works wonders with him. I found myself crying (happy tears) last week to see how hard he was trying. My only fear is that his sister who is 6 years younger and in a group class at the same time has just been moved to Stage 3 whereas he is still on 2. He does not know about DD but they're giving certificates out soon. I am hoping (for once!) that he won't pay attention....

@MissHavershamReturns DS was off school all week with EBSA and didn't want to take any meds, so I don't feel like we made much progress. He was on the 10mg last week and the muscle pains eased off a bit. He also got some appetite back but overall we really haven't noticed any of the much hoped-for positive impacts. We asked a few of his teachers if they've noticed anything. One said that he was maybe a little more settled / focused in the mornings.

We have our next appointment on Monday. When I last spoke to our prescriber last week, he said that given the comorbid ASD we might want to consider moving to a non-stimulant. I feel a little nervous about this as I understand they take a few weeks to start working and aren't as flexible as stimulants (you can't just skip a day or two). Is it worth trying for a moderate release stimulant first instead? Again, we're on 10mg immediate release tranquilyn, just in the mornings.

I'll try to get him to take it this weekend so we can observe again before the appointment.

@SquashSqueezee That's lovely about your DC's swimming. 🙂

Thanks for the message @MissHavershamReturns things have been much better this week mood-wise this week and DS has been doing well. The clinician advised that we could try a couple of days without meds to assess the impact. We might just leave things as they are for now though. Take care everyone!

So, on the paediatricians advice, I opened the capsule and put it in a petit filous but DS took a mouthful and spat it straight out due to the texture (grains in smooth yoghurt).

not sure how else to try as don’t want to waste the meds experimenting. He said he won’t be able to swallow it whole.

any ideas? Can it be in juice?

Well after my last post stating how well everything was going last night DS had a major meltdown and then would not sleep until gone 10pm. I’m finding it hard to not associate everything with the meds! I know a lots of kids gets knackered this term and especially on Fridays at the end of the week. It’s the birthday party this afternoon, he hardly ever gets invited so I’m hoping he will be able to interact better than before and co tell impulses to dive on other kids etc.

@CoffeeCakeAndALattePlease can you try putting it in Nutella or I think people suggest apple sauce that’s textured. We do the yoghurt, I did have to bribe my DS the first few days by letting him play on my phone if he took it, also offer a drink straight after. I’m not sure about juice as I think the grains have to be swallowed whole. Good luck today x

@dimples76 wr are in same situation with my dad who’s 4 years younger in some things she’s already surpassing ds but so far he’s not bothered.

One thing I had t anticipated is my older DS had become very jealous and thinks younger DS is getting all the attention. I know it’s difficult for kids to understand when a sibling has additional needs and we are making sure older DS has one on one time but with the 3 kids and both working full time finding juggling it all difficult. Older DS is just at pre teen age so think hormones are flying!

If medication continues going well we are planning to start DS at some more clubs after Christmas as he’s always been keen to try things like karate etc but we’ve struggled to find anything that’s inclusive so been limited to things that can pay for 121 or where we do it with him..

@MissHavershamReturns I am getting worried about my sons next prescription and if I need to request 10mgs but double the quantity rather than the 20mgs.

also do you have top up doses? I’ve heard these mentioned on here I am wondered if we would be able to request some for when have evening activities. Not often but 6-7:30 now my DS has a grouchy period which is fine as we let him chill out and go on his games etc which helps regulate him but difficult if have something at that time.

Our main side effect remains difficulty going to sleep, taking up to 2 hours!!!!! Once asleep he’s having 10ish hours which I think is fine for his age (6.5) but on school mornings I have to wake up him so can’t sleep as long. He’s not on melatonin or anything and we already follow all the advice about the good nighttime routine. Any suggestions welcome!!

Managed to get it down with a dollop of jam…. hope the same thing works tomorrow!!

Apparently he was calm and focused on Lego all morning - I wasn’t home so didn’t get to see it unfortunately.
since 2pm he’s been very emotional and manic. Doesn’t help that his sister has been on a bit of a mission to wind him up 😖
only an hour until bedtime, hopefully…..

@CoffeeCakeAndALattePlease I am struggling to get DS to take the meds too. Given up on getting him to swallow the capsule for now. The psychiatrist said it was fine to put the powder in water but DS absolutely refused to take it this morning so I gave up after half an hour. Maybe I will try yogurt in the morning.

@SquashSqueezee hope that the party went well.

Well, his melatonin which is usually a big help at bedtime, had absolutely no effect and DS fell asleep about 15 mins ago!!

@CoffeeCakeAndALattePlease sorry to hear you’ve had a rough night. I hope wake up wasn’t too early? My sons on Medikinet but we had exactly the same first few days, big problems with eating and sleeping. Also similar with noticeable difference in focus levels etc but on 10mg dose wore off early afternoon and then had grouchy period.

We’re 3 weeks in now and eating and sleeping have returned to almost normal. My DS has always had trouble falling asleep and that’s the same now. I’ve been tracking everything and pre meds his sleep was averaging 11hrs per night and now it’s 10, so obviously less but he seems ok on the slightly lower amount.

My husband ended up taking DS to the birthday party yesterday and for the first time ever he said he wasn’t on edge having to intervene! He was able to follow Instructions for the activity etc. He did become a bit withdrawn at the disco part at the end but he’s Autistic and doesn’t like loud noises etc so this is to be expected. Also it over ran until 5:30 so his meds would have been wearing off/worn off by that point. I’m going speak to perscriber at our next review on the 18th about top up dose.

Had DS's second titration appointment today and the prescriber recommended changing from 10mg tranquilyn immediate release to a 10mg modified release. Local chemist says they can get metyrol, which I've never heard of. Has anyone tried this one? I think it's equivalent to Medikinet with a 50/50 release, but I know there can be a difference between brands, even if they look identical. I hate feeling like we're doing medical experiments on my child.

So, DS is on 10mg Equasym XL and at night 4ml/mg melatonin.

Seems ok-ish further day - much calmer until about 3pm then it’s clearly wearing off. Things are dire by bedtime. Then he’s been waking for 3-4 hours in the middle of the night and is very wide awake in that time.

when they review things I’m not sure if an afternoon dose of something to help him through the rest of the day might make things even worse at night?

We've started seeing physical behaviour again, this week he has punched (I hate that word) two others in the playground, he has such a sense of injustice if something steps away from his narrative. I'm gutted and feel like this is getting worse.
Sch are organising a meeting with the senco, teacher and learning mentor to look at strategies as they feel their usual behaviour plan won't work for him.
I honestly feel like stopping the meds (his consultant did say safe to stop like the last type we tried) we were told a review would take place 6 weeks, this was in September. We're now told reviews are in Jan due to delays, we're left with no one to get advice from.
We're suppose to give a break in the hols, so we're going to see what we can put into place to support those emotions and if it seems better, we won't continue and then discuss at our review. I'm scared of how he'll go back to struggling with tasks / concentrating etc but his teacher advised we took some time to think about what's more important to him. Emotions/ relationships or school work.
Exercise helps largely, however at only 6 I have no idea of what equipment he could use safely at home. He uses my lighter weights, wondering if anyone has any suggestions. Trampoline coming in spring as our garden is a bog this time of year.

Sorry for the essay!

Hi everyone, hope it's okay to join the thread! Reading through has been really useful for me. My 5 year old DS started 10mg of Medikinet XL today - we've got a week at 10mg, then moving to 20mg. I didn't notice any change in him this morning, but he went to school about half an hour after his dose. Really nervous about it all!

Hi all, we've swapped from Medikinet to Concerta to see if a longer release will stop DD from losing med effects in the afternoon. Truth be told, she REALLY struggles with hormones at this point in her cycle and I don't know if meds can really mitigate that. It's been a real struggle at secondary (she's Y9) for her to get to classes on time. She's late internally almost every time and starting to skate on thin ice disciplinary wise. She's got detention after school every day this week and into next week as well.

There's potentially a shortage of Medikinet in my area (London) so that was another reason for the switch. Hopefully that won't be true for long.

@TinselTarTars "he has such a sense of injustice if something steps away from his narrative."

I really hear you on that!! For us it's DD having run from her detention after seeing a group of girls inside the room who hate her and vice versa. Now it's escalated to a 45 minute detention. Of course to her it was a no-brainer that she wouldn't go into a room with her enemies, but her teachers obviously think a different way. Feels like half my life is spent trying to walk a line between my kid and the world, and translating both ways.

@needaname19 welcome to the thread. My DS is on 20mg Medikinet XL after initially starting on 10mg for 7 days.

How was the first day? When my son was on the 10mg dose it wore off before he got home from school so we saw no difference until the weekend, on 20mg last closer to the 8hrs.

Thank you @SquashSqueezee - same here in that we aren't seeing any benefits are home yet, as the meds have worn off by the time he is home from school, so looking forward to seeing how he is over the weekend. Had positive feedback from his teacher today though, who said he was much calmer and more focussed! So fingers crossed. Did you find there were many side effects when you moved from 10mg to 20?

@needaname19 no we didn’t notice anything additional other than appetite suppression and trouble getting to sleep. Tomorrow we start week 5 of meds and side effects have definitely lessened but it’s such an effort to get my son to eat, I have to make sure I’m sat next to him reminding him eat each mouthful which I’m sure he find irritating but if I don’t he won’t eat anything!! I know lots of the meds have this as common side effect, I really have no idea if this is the best for for him or in should trail something else, will see what is said at his review on 18th.

Hope it goes well for you this weekend. My son is so much more alert on the meds and a lot less conflict with his 2 siblings which is lovely to see

That's really sad, it's frustrating when schools don't recognise triggers and she certainly shouldn't be penalised for lateness due to her needs. Could they issue a leave early pass to help her succeed? Tbh I cannot even see secondary for my son, I have this lovely package in my mind of what could work for him but the logistics to it are not going to be as romanticised as I imagine.
I work alot with children with send facing exclusions in sch, and it's mostly secondaries who have not educated themselves in how to support the current climate of children.