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!

Thank you, @TinselTarTars - school isn't being too unreasonable but they could definitely do more in the way of reasonable adjustments. It's a long fight. Thank you for understanding. I often wish there were more "halfway house" type schools somewhere between mainstream and SEN.

Small med update: She seems to have far less appetite on Concerta whereas was eating reasonably on Medikinet. May have to switch back, will give it another week. Looking forward to a med break over Christmas. Actually just bloody looking forward to Christmas in general. We all need the break!!

Hi everyone hope you’re all doing ok and Christmas events at schools are t causing too much mayhem!

Its my sons 4th week on Medikinet XL 20mg, we’ve got to complete self assessment questionnaire before review appointment next week. I’m getting concerned about my son’s total lack of appetite. It started last week but he had a heavy cold so didn’t think too much of it but it’s continued this week. He’s eating a small breakfast then it’s a massive struggle to get him to eat anything else! Especially lunch and the teacher told us today they caught from throwing some of his lunch in the bin which is worrying.

We've noticed great benefits but I’m thinking we might need to try another type. Had anyone experienced the same or got any tips to help get the calories in??

So yesterday was his first day at sch with no meds, I was dreading waiting for a call. Teacher said he was emotionally balanced all day, harder to engage with work but a much happier boy. Eating more and sleeping better, so I'm very conflicted.
We're on hols next week so he's got a good 3 weeks off sch. We plan to not take the medication and see how it goes. Being mindful that all children are over stimulated this time of year.

@scattery and @squashsqueezee We had the concerns about lack of appetite but during vitals check ins, nothing was flagged by the nurses. I did introduce milk shakes as a treat to get more calories in and almost a 3 course breakfast e.g brioche bun whilst watching TV, weetabix at the table and then an actimel to take the tablet with.

School have reported improvements since DS started on lisdexamfetamine- less distracted, more independent, engaging more with his peers. However, when it wears off, usually at about 4pm.he is explosive. It all.came to a head on Tuesday when my neighbour called the police worried about my safety.

I spoke to CAMHS the next day and we are switching to atomoxetine. Getting the prescription tomorrow.

Has anyone seen a difference in response to immediate release vs modified release methylphenidate? When DS went from 10mg to 20mg IR, he got very bad muscle pains, lost almost all appetite and his sleep got worse and I'm wondering how likely it is that he'll respond differently to an increase in the XL.

He's now been on 10mg modified release for about 2 weeks, still not seeing any impact really. Our prescriber said we'd ideally increase by 5mg but the 5mg capsules have been unavailable for sometime, so he's suggesting increasing to 10mg.

DS can't swallow the capsules, so he takes this with fruit puree or yogurt. I'm wondering if we could just spilt one capsule across two days to get the 15mg, but I'm guessing CAMHS might not want to agree to that.

Hello - just popping back on for an update. DS (13) has tried Medikinet (50) and then switched to Elvanse (40). He says the meds have had no effect.

School have reported his attendance has improved. He had had the best school report ever (effort and achievement at the top grade for 5 subjects). He has won best in school in a national award; and has had two in-school awards (vouchers) for behaviour.

It sounds like an amazing success for the meds. However at home he has been quite down and exhausted after school. Before medication he was happy at home but really struggling socially and not able to cope with a full timetable at school.

The ADHD prescriber suggested a trial off meds to see if his mood improves (we have been waiting to coordinate this with school).

I don't feel the success at school is worth the exhaustion/depression at home but he seems to be finding school easier and to have made friends since starting meds.

I am planning to try two weeks on and two weeks off in January and see if we can figure out whether meds are helping or harming

Hope you all have a peaceful Christmas xx

Can I join?

DD10 got her ADHD diagnosis last week and we are awaiting a script for Medikinet? She is definitely of the hyperactive/impulsive type rather than the day dreamer type that some girls are assumed to have.

We are starting off on 10mg for a week and then going up to 20.

I am incredibly apprehensive!

She is currently unable to attend school due to EBSA, we have always suspected ADHD but this February something changed in her when she witnessed her older sister be sick. She became terrified. Didn’t want to go to school in case she was sick, started running away from teachers when I was dropping off. She now doesn’t like going near the place for fear of being “dragged in” and her door way being blocked. Any exits being blocked causes her to panic. We’re currently accessing 3hrs worth of tutoring from the LA.

Hi all! So we completed our first week on 10mg of Medikinet XL and are now five days in to using 20mg. So far I haven't seen a huge amount of change in him! He's a little calmer and more 'present', but certainly not drastically and it's wearing off by the time he is home from school. No side effects or 'come down' really either. Do you think we should try a different med, or is it possible to increase the dosage? He's only 5, so not sure how high of a dose they would give? Has anyone experienced anything similar?

My dd aged 10 was on elvanse but was sullen and argumentative with me and didn't eat lost 1.5 stone and she was all.bone. we are on methylnate xl 40mg now works at school and she's bouncing of walls at home. I can manage this. She has 10mg top up ir if needed. Got some melatonin for night now as well

I'm on medikinet 60mg now and a top up if needed. The come down is horrible. But on elvanse I had a nervous breakdown lol

The head aches i get are awful but that's dehydration I think. My dd constantly drinks water and is fine!

DS has been on his Equasym XL for 3 weeks and the last few days it suddenly doesn’t seem as effective. Is this usual? I wondered if it’s an indicator that the dose it ready to be increased?

consultant is off now until January anyway so will be continuing as is but it’s such a change to how effective it has been for the first 2 weeks.

Hi, my son is much younger than yours but we saw the school achievements rocket when medicated. To the extent I thought one of the girls sitting next to him had completed his work. However, he was very low, tense and extremely reactive.
His teacher even said to me, she'd rather he attend school happy and emotionally balanced then hyper focused and tense as she was concerned that although he could complete the much harder work, how much was he actually absorbing due to the hyper focusing on the task in hand.
We're two weeks off meds, work has totally declined (in ehcna talks now) but he's so much happier.
It's such a difficult balance, hoping to actually see his consultant in January and work with the sch to see what we can do.
We just came back from holiday, which I was anxious about being unmedicated, however, he only struggled when all together in the accommodation with no space for himself.

Hello,
Can I join pls? My 6yo DS is starting meflanate xl soon, it's a low dose so I'm not sure if it will take a while to see the effects? I'm nervous for side affects but hopeful for concentration levels!

Hi everyone, I will try to check back in later and write some responses but I just wanted to wish one and all a wonderful break in this festive season and also to send best wishes for the New Year. Wishing good things for every one of us, our dc and all our families for 2025.

Anyone reading these threads can see how much care and time all of us are putting into our children in circumstances which often make that much less straightforward than standard parenting. I just wanted to salute us all, for every bit of what we are doing on the meds and all else.

There is so much love and thought in the pushing for diagnoses, decision-making - whether that is to start or not, continue or stop, stick with a medication or switch, seeing consultants, obtaining prescriptions, obtaining medication reviews, chasing up scarce medications and monitoring for side effects, supporting children through med breaks, feeding up those who need it due to appetite suppression and monitoring weight and height, chasing sleep and all the encouragement our dc need along the way.

It is a miracle what we all do and we deserve recognition as total oh and also

DD10 is on day 3 or 4 of medikinet XL 10mg. Not noticing any difference so far. We move up to 20ng after a week of 10.

Good luck @macap! We found that we saw much more positive change at later doses than we did at 10 mg. I hope this is the same for you and please do keep us posted if you would like too

Hi @Mrburnshound wishing you all the very best to start the meds. We started on a low dose too and it was reassuring to see some positive changes from the start and not too many side effects. I hope it goes well for you and please do post as much as you would like about the early days.

@TinselTarTars wishing you all the very best on the ECHNA side and it sounds as though the teacher is thinking about what is best for ds in the widest sense which sounds positive. I hope the meeting with the consultant is positive.

@CoffeeCakeAndALattePlease I’ve found that we’ve seen times when it has been less effective and sometimes that has been as a result of different types of upheaval. My ds does less well when he’s unwell (tonsillitis, other similar illnesses) and also if there’s deadlines or pressure (school performances, music grades when he was still doing those, tests). Because he has AuDHD it’s also when there’s a lot of change, like around Christmas time, which he really doesn’t like. We’ve mentioned it to the consultant, but for us it has calmed down and meds have seemed to become effective once again when the upheaval has settled down and also seems to have been helped by having the medicine breaks the consultant recommended.

@Treeinthesky glad to hear the xl is working for your dd. How long have you been on ADHD meds yourself? It’s always so useful to hear from adults who are on the medication about how they find it!

@needaname19 I’m sorry not to have direct experience, as my ds was quite a bit older when we started. If you look at the NICE guidelines on prescribing ADHD medication or at the ADHD medication book I’ve linked in the op there may be more there. I don’t know how high they could go at this age, but for us the effect at 30 mg of Medikinet XL was so much more than on lower doses.

@CompluterSaysNo how incredibly good about the report, but I’m really sorry to hear about the down times ds has been having after school. Have they tried a lunchtime top up at all? This made a huge difference to how our ds was in terms of mood in the afternoon - he takes 30 in the morning and 10 at lunchtime of Medikinet XL.

@chillberry I’m sorry to hear that the shortages are making it hard to get Medikinet xl 5 mg. It sounds worth asking about splitting the 10s, but I don’t know how easy that would be - I don’t know if it’s possible with one of those medicinal drug scales to weigh the contents of the capsules, but I’m sure the consultant will know.

@dimples that really sounds you had been having quite a tricky time in the afternoons on the previous medication. How has the attemoxetine gone? I hope it’s been a little better both for ds and for you.

@SquashSqueezee if you look at the old threads, we had a huge struggle with ds’s weight and we managed to overcome it with a lot of trial and error. Two things that worked really well for us were a massive cooked breakfast daily and an extra supper meal.

We counted calories and made sure he had at least 500 kcal every morning. Lunch wasn’t much as he couldn’t manage any more, but he was able to eat a reasonable dinner. We then gave supper at about 7.30 pm onwards, when he was starting to get a bit hungrier again and would try to get another 500 kcal in then.

We found milky drinks (for him hot chocolate) were a really good way to get calories in too. We started with high fat and high sugar foods that were appealing to him to encourage him to eat and then when weight was starting to go back on we gradually cut the unhealthy food by replacing it with healthier food. So ice cream became yoghurt, crisps became oatcakes etc etc. Please keep us posted on how the food goes if you would like to do that. I’m sure many people on here will have tips and suggestions to share.

@Scattery how did things seem to go in the last week of term on Concerta? Will you stay on Concerta or switch back to Medikinet? Hope the med break has been going ok over the Christmas period and that you’ve been getting the break you all needed. Definitely the right time of year for a bit of peace!

My DS9 is starting on Methylphenidate 5mg this week, in time for his return to school next week. He’s Y4 and isn’t “too bad” at school but we find him very difficult to manage at home. I’m hoping it’ll help but I know it can be a long road! My DH (diagnosed as an adult) takes 40mg Elvanse and it’s been life changing for him, he takes it almost every day (and when he doesn’t his moods are all over the place).

Good luck with the first few days of medication @impossibleimposter and welcome to the thread! It’s great that your dh has used the medication for a while and will be the family expert on meds. Our consultant told me that there is thought to be some genetic component to response to the medication, so if it works for a family member it is then more likely to work for the child. Hopefully the medication will help and please do keep us posted on how everything goes if you would like to.

Thank you @MissHavershamReturns !

Well day 2 on 5mg Medikinet and I have to say it’s made no difference! No negative side effects that I can see which is of course a positive, but still the usual defiance and refusal to do simple things (DS ticks most ODD boxes). possibly slightly fewer really obvious hyperactivity behaviours such as the noises and ticks upon first taking the meds as I definitely noticed that ramping up again around lunchtime when it would start wearing off.

I don’t suppose 5mg is enough to be honest but it onlY seems sensible to start a child on the lowest dose.

That’s very interesting about the genetic component, and I would’ve felt more comfortable with DS starting on Elvanse like DH.

Thank you @MissHavershamReturns

So we are now on 20mg of Medikinet XL. We noticed no difference at 10mg tbh. Since starting 20 I feel like she is a tiny bit less oppositional and seems more chill when asked to do something.

One thing I have noticed which I don't know is related to meds or not is she keeps licking her lips and now has a red ring round them. She has always picked at her lips but not usually licking them. Trying to clear it up with Vaseline to keep them hydrated but even as I'm telling her not to lick them she's licking them! 🥲

@impossibleimposter it’s great to hear no side effects, but I completely understand this situation of slight changes but no wow. I gave the first meds to ds on day 1 and felt a bit let down when I didn’t get magic! For us the difference on later doses has been miraculous and so much has improved for ds since starting meds. When is your next medication review?

@macap I’m glad to hear she seems a bit calmer on the 20. I think we did get an increase of mouth related sensory seeking as well but for us it was temporary - we bought some Lego brick shaped pencil toppers for ds to chew which seemed to help. He also compulsively nibbles lips and hands and has split his lip and chewed holes into skin around nails at times, so I sympathise.