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!

@Thanksforthat welcome to the thread! We found that the early days of Medikinet for us were quite different from how it’s been for us longer term. Ds has done really well on it longer term and is having fewer headaches than he did three years ago when he wasn’t on it, maybe because he’s calmer. But in the first week he did have some dreadful headaches which made me feel panicked.

I would definitely keep a sleep diary and tell your prescriber. What time did you give it - assume it was quite early in the morning so you couldn’t move it earlier to see if that helps?

I’m also confused by the ‘out of the system’ thing, because in the evening the meds are supposed to be out of my ds’s system, but he’s still MUCH calmer and less hyper than when we are on a med break and before he was medicated. I don’t really understand this!

Thanks for the replies everyone. So our psychiatrist emailed me back and suggested he move down to 5mg for a week or so. She has also prescribed melatonin. The medication definitely worked so it will be hard if it's not a match because of the rebound effect.

I've learned a lot on this thread so thanks again.

@Thanksforthat how is the sleep now on the lower dose and with melatonin? Hopefully things are settling for you a little bit now.

Hi just wanted to come back and update. So we have pushed through. Did the 5mg for a week and now on 10mg daily. It’s hard to say if he will be better focused in school as we are off until September (Ireland). He’s definitely not having the crash when meds wear off like he was and by the time the pharmacy sourced the melatonin he had started sleeping - I did start giving him magnesium glycinate so maybe that helped . I can’t believe I'm saying this but he is actually eating better on the medication. He never had an appetite. Meals have always been a chore whereas now he just eats it (whatever fly by the seat of my pants meal I’m serving 🤪) with less fuss.
I don’t know. There is one other thing that’s happening. He’s playing outside with other kids. It’s 2 years since he did that. Could that be the medication? It’s only happened in the past 4-5 days. He’s outside all day. He’s not in anyway sporty so it’s been amazing for us. He’s even started wearing his baseball hat backwards to be cool. As soon as the meds wear off though it’s back to loudly verbalising a million facts about reptiles and jumping on the couch while we watch tv 🫣

Hi. I just want to update everyone. We're in Scotland and my DD had a rough high school years. This is the first year she has been on ADHD meds (she was diagnosed last year but they didn't want to start her on meds until she had finished her exams). It was still hard for her and she does get her own accommodation and 25% extra time. She aced her exams and is headed to university in September! She is autistic as well and at 14 it looked like she was going to leave school without any qualifications. No adjustments or accommodations were made for her at that time and we had some pretty full on situations with police and CAMHS input. She is now 18 and an adult and we are finding any adjustments to ADHD meds pretty impossible since it has to be done by a psychiatrist and adult ones are hard to come by though a referral has been made months ago. Luckily she is pretty stable on what she's on. I would like to get her a prescription of fast acting to help when her Medikinet XL wears off but not the end of the world. I never thought I would say this but I miss CAMHS 😂. Anyway, please don't give up all.

We are just starting ADHD medication for my 11 year old son who is starting secondary school in September. We have just completed the first week 5mg medikinet twice a day crushed as he can’t swallow tablets. I have not noticed much difference only that evenings are horrendous, he won’t go to bed, becomes aggressive and then screams at us and swears. Does this improve when we move to 10mg? I’m worried the rebound will get worse! Any experience? Desperate mum

@Thanksforthat great to hear from you and it sounds as though it’s having a brilliant impact for ds. How fantastic! I haven’t experienced the increased play with others myself but I wonder if he’s able to concentrate better on what they are doing as a group? Brilliant to hear he’s actually eating better too and sleeping ok!

@Hapagirl48 I’m so sorry to hear about what a tricky few years you’ve had and that you had to wait so long for the meds. But how amazing that your dd did so well in her exams and is off to uni!! I really appreciate you sharing this as when I look at ds I can’t believe he’s less than 6 years away from adulthood and that thought is mildly terrifying. The wait for a psychiatrist sounds incredibly frustrating but I’m so pleased she’s stable in the meantime. Is going private an option at all, or do you think it’s better just to wait as she is actually ok at the moment?

@GC12345 welcome to the thread and please do keep posting as the days go on as much or as little as you would like to.

You may already have done this but I would definitely mention this reaction now explaining aggression etc to the doctor who has prescribed the medication to him. It might be that the doctor will think he needs a little top up at lunchtime of immediate release to smooth out the medication leaving his system so he doesn’t have such a sharp “crash”. If you look back at my thread one and read my posts from the first week you will see that we experienced this and had to introduce a top up.

I would also mention the sleep issues with refusing to go to bed, as the doctor prescribing might want to try melatonin for him if that continues. We haven’t used this but I know a fair few on this thread have had good results with it.

Someone wise said to me on here in my early days with medication that I should try not to get too worried about the early days with side effects. We had a fair few issues in the first two weeks on 10 mg which was the starting dose for us - headaches, low mood, irritability and medication crash and sleep difficulties plus one episode of bed wetting which was something we hadn’t seen for years. None of these have been issues longer term, so there is hope that side effects will settle after maybe week 3.

I hope this evening hasn’t been too awful and please keep us posted

@GC12345 i just started Medikinet too. My posts are close to top here. The first night my son pulled the armrest of the cinema seat when meds crashed. Not in aggression just being over boisterous. That carried on for about 3/4 nights. I was despairing. But it’s fine now. Today I forgot to give home his meds before church. Oh the difference. He was well behaved (ish) but his sentences were so garbled. I’d actually forgotten how muddled he gets when trying to ask a question. He just couldn’t spit it out if that makes sense. Anyhoo. Gave him a 5 mg when we got home and normal resumed. Now he’s not super quiet on meds. Just more in the flow with us. He has verbal hyperactivity so it’s great to chat to him now without him dominating. Also he has a new found love of a bit of telly because he can pause for the 20 minutes and enjoy it. Before he would just lose track. It’s such early days for us. I’ll have more to say when he goes back to school on the 28th

@MissHavershamReturns Meds and maturity help! 6 years is plenty of time for your DS to mature in a supportive environment. The state of adult services is scary and I think we are all lucky to have had our kids diagnosed as children. In true ADHD style though, DD has looked at none of her emails from Disability Services from the uni and now late for applying for Disability Student Allowance. I had asked to be copied into every email but because she is now an adult they can't do that without her express consent. They emailed her on 28 June about this consent and she has just now replied to them sigh. I did think briefly of going private for top up meds but it's not urgent and hopefully we will hear from adult services at some point.

We are in the quick release at the moment but I think we would be better on a longer release. Eqaysum was mentioned. Anyone any experience with this and at what dose?

@GC12345 someone much wiser than me will answer soon but from reading the threads I’ve learned rebound can be worse on extended release. My 8 year old is on medikinet 10mg extended release and the rebound was tough first few nights but got better.

It’s a balance I guess as we can’t continue on instant release twice a day as he is off to senior school in September and so t want to take a tablet at lunchtime. I think I will request equasym XR 10 mg

@GC12345 just a quick thought - have you checked with destination school about lunchtime tablet. My ds’s secondary have been great about him taking it and it actually helped with transition as there was a kind adult checking on him at lunchtime every single day

@GC12345 in case useful the medication book linked in my op is very easy to read and has some good content about equasym

@Hapagirl48 thanks so much for your very reassuring post! I guess I need to remember how far ds has come from the point where it looked like ms secondary might be a pipe dream.

@Thanksforthat rebound calmed down here too. My ds is still better with lunchtime med than without it, but no massive crash anymore if I just give him the morning med

@nuttyroche2 Really sorry to hear this. At this end we are on Medikinet not Comcerta, but having looked up concerta on the Boots stock checker it looks like stocks are out close to us too www.boots.com/online/psc/ www.boots.com/online/psc/]]]]

Have you tried ringing smaller independent pharmacies as well? One not to far from us had a med we needed when everyone else was out.

Good afternoon, I’m really hoping for some help.

my son, aged 6, was on medikinet 30mg and it worked very well but he crashed at about 230. He was on it for a few months and other than that it was ok, at times he was a bit vague and anxious but on the whole ok.

he is now returning to school in September after being out of school since January. The clinician suggested we move to 18mg concerta. The first few days were very rough, we had one good day but he was running out in front of cars. It was too dangerous so we increased to 27mg. He is more himself, on the whole it’s ok but his hyperactivity is just off the chart. It’s been 2 weeks now. Will this calm down?

spoke to clinician today and he couldn’t increase the dose because of stock issues so we are trying an immediate release first thing followed by the concerta. Has anyone had any experience of moving from medikinet to concerta? I’m seriously considering moving back but don’t want to keep chopping and changing! Can someone help?

thanks

Hi @MintAeroBubbles - yes, we did. Two years ago. When DS was 7. It was a disaster. Concerta just didn’t work for us - we
started at 18mg then moved to 27 and then 36mg. But it had no effect. We had also hoped to avoid the crashes (otherwise we were
happy with Medikanet) and so the recommendation was to move to Concerta - but after 4 weeks we moved back as Concerta had almost no impact. Bizarre as apparently same family of drugs.

earlier this year, a new doctor suggested we switch to a fast release top up at lunchtime (rather than Medikanet) and that has reduced the crash. So we give 15mg XL Medikanet after breakfast and then a 5mg fast release top up. This works for us at the moment…

@MintAeroBubbles we’ve never tried concerta but we do medikinet XL plus the lunchtime top up of immediate release like @Hels20 and that works well.

Thank you so much. I will give it another week. Today has been a dream! Maybe it’s just a more irrational drug?!

Folks, have been on this thread regarding my DS (ASD/ADHD). He's doing very well on Medikinet; he's only on 20mg/day due to his weight. Despite low-ish dose it has been lifechanging for him. For a long time I've suspected my DD (18) has ADHD. She has told me she also thinks she may have ADHD. But; as she was coping I didn't feel the need for diagnosis or treatment. However; she's underachieved for the second time in her A levels. I am now looking into assessment; however as my son was diagnosed via NHS I'm not sure how to proceed. Any advice?