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!

@LoveMyADHD it is interesting because we saw a senior private specialist (has written academic medical journal articles in ADHD field etc) and he also picked medikinet to start dc on, even though there was no cost constraint as we went private.

The meds are so personal to each child aren’t they in how well people respond to which med. So far medikinet still seems to be working really well for both my two. But yet for others it definitely doesn’t work, as with all the meds I guess!

@Treeinthesky and @noideaoffuturenow I’m so sorry to hear
you are struggling with weight on meds. I know how stressful that can be, especially when we all then worry about the medication being withdrawn. It might be worth looking back at thread 2 of these threads as we had huge problems with ds and weight from Feb 2023 onwards. What will work will be different for each child but lots of people shared really useful tips and I posted about our experiments and ultimate success with weight.

In the end we did work out a regime that worked to regain weight but it was quite a lot of effort - we found we had to give ds 500 cals for breakfast every morning, with high protein and high cal foods, like bacon, sausages, eggs plus toast etc to fill him up. Hot chocolate drinks were great for weight gain with full milk, also full fat yoghurt. Lunch he was not able to eat much and dinner he could only eat a bit. We ended up having to make a further full meal at about 8 pm of another 500 cals. Again high protein and high cal.

In the early days the clinic advised us to shelve healthy eating for a bit and give lots of crisps, cake, biscuits, jam sandwiches etc. we did this initially but as the weight started to come on we weaned ds off those foods and onto more healthy options like oatcakes with peanut butter.

hi @MintAeroBubbles how is your kid doing on concerta
we have had a proper whole week on it and he’s been absolutely amazing but the rebound this weekend is something I have never ever ever experienced before . Proper adhd times a million. Irritable, aggressive, incapable of a carrying out a simple request !
nothing like my normal lovely boy

and obviously whole weekend was like this

@MintAeroBubbles it d be good to hear your update

Hope everyone is doing great x

@noideaoffuturenow my daughter is 18 (diagnosed at 17) and on Medikinet XL. She says it works, it really helped her through her exams but @LoveMyADHD also mentioned age and Medikinet. She doesn’t really know any different as it’s the only one she has been on except Xiggattin (sp?) briefly but such bad side effects she had to stop after a couple of days. But now I really want to ask about whether she is on the most appropriate meds for her age. Impossible to see an adult psychiatrist it seems though. Anyway, she’s managing Freshers Week but I’m on the lookout for burn out.

Hi, new to this thread. We started medikinet xl 5mg for my 6yr old son 3 weeks ago. How quickly have people noticed a change, good or bad?
School report no change in focus and his was unable to engage with his tutor. We've had two behaviour incidents in the space of days at school where he's physical hurt another child when angry...something which he'd never done before.
His emotions are sky high at home, dsyregulating for 30mins, again, this is new. I'm at a loss to stop the medication and seek advice from his consultant, or do we have to get through this for it to have a positive effect. All advice welcome.

So sorry @TinselTarTars - we started on Medikanet with our then six year old DS at 5mg and it really had no effect. We had to
up to 7.5mg and only at 10mg did it start to bite. Within 3 months we had upped it again to 15mg. Only then were we
getting positive reports from school.

I am so sorry that you have had these behaviour incidents - my heart really does break for you. Persevere with Medikanet but maybe up the dose. (I know this is really naughty but I was so exasperated that one day I just gave him two tablets so went from 7.5mg to 12.5mg and the report from school that day was great….so went back to doctor and pleaded with him to up the prescription - which he duly did…)

@TinselTarTars great to have you join us. Medication can really be such a rollercoaster for us parents I think. We had very similar with our ds initially in terms of angry outbursts. In our case there was a clear time pattern to the incidents and it was determined that as they all happened after 1 pm it was likely to be the medication crashing out of his system and causing a huge reaction emotionally due to medication rebound. A small lunch time top up has completely sorted this out for us. Is there any pattern in timing where he is angry in the afternoon/evening?

Thank you both, that is really interesting to note the timings, I hadn't thought of that. It's such a stark contrast to the behaviour we have always known. I'm going to speak with his consultant today and hopefully get a review booked in earlier.

Another newbie to the thread here 👋 I'm currently reading back through thread #1 but have a question!

DS age 8 started MedikinetXL 3 days ago. He's been refusing to take the meds after the first day (don't think he's truly having side effects but he's claiming he can't get to sleep) any ideas for encouraging him? He won't attempt to swallow tablets so I'm having to sprinkle the granules on something and he's even refusing to try taking it on a spoonful of Nutella! Help!

Can you focus on the 'can't get to sleep' side? Then maybe he will not think it has side effects. Perhaps try a night light, lavender spray, weighted blanket, story or audio book?

Son been on equsym xl for a few months and his appetite has disappeared. It’s a struggle to get him to eat anything even later in. Any advice/ideas as not sure how long we can go on like this. Private dr not helpful

@sundaysunday2024 I’m really sorry to hear that he’s worried about side effects. We did experience some sleep disruption for the first few days with my ds and that did settle after week 1 but he found it pretty upsetting at first. He even had a night time accident which is the only time that had happened in the previous years and he has never had one since.

It might be worth trying to reassure him that most children on medikinet XL are ok with sleep and that if there are issues he can try melatonin. Do you think it might be worth agreeing with him to try it again from the first Saturday of half term so he can try it without the pressure of school?

@GC12345 I’m so sorry to hear you are having struggles with weight. Lots of us on the thread including me have been through this. I was very sceptical to be honest that anything would work but trial and error got us there in the end.

I’m just going to paste something I wrote earlier in this thread in the hope it helps you as well.

”It might be worth looking back at thread 2 of these threads as we had huge problems with ds and weight from Feb 2023 onwards. What will work will be different for each child but lots of people shared really useful tips and I posted about our experiments and ultimate success with weight.
In the end we did work out a regime that worked to regain weight but it was quite a lot of effort - we found we had to give ds 500 cals for breakfast every morning, with high protein and high cal foods, like bacon, sausages, eggs plus toast etc to fill him up.

Hot chocolate drinks were great for weight gain with full milk, also full fat yoghurt. Lunch he was not able to eat much and dinner he could only eat a bit. We ended up having to make a further full meal at about 8 pm of another 500 cals. Again high protein and high cal.

In the early days the clinic advised us to shelve healthy eating for a bit and give lots of crisps, cake, biscuits, jam sandwiches etc. we did this initially but as the weight started to come on we weaned ds off those foods and onto more healthy options like oatcakes with peanut butter.“

@sundaysunday2024 Hi, I'm also new to this thread. DS10 started on Medikinet XL 10mg this week, but the first day he couldn't sleep (even with melatonin) and was awake 4 hours after his usual sleeping time, and very dysregulated. It was so awful that I didn't give the dose the next morning and contacted the Dr who confirmed not to continue but now we have to wait for another appointment to discuss what to try next. We're massively struggling at home and I was so hopeful that the meds would help so I'm devastated to be back at square one.

@Custardslice3 I’m sending lots of sympathy and really sorry to hear that. It is such an emotional journey for us parents. Maybe another med will suit him better - these threads have shown how certain meds help some kids where some kids need other options. Keep us posted and will keep my fingers crossed for you!

Thanks @MissHavershamReturns I've been reading back a bit on the thread and can see the sleep issues seem to be something others had experienced. @Thanksforthat your post sounded like your son had a similar reaction, except my DS is already on melatonin and he still couldn’t sleep. How is he doing now? I’m wondering if we should have persevered for a few days to see if it settled, but at the same time I’m not sure we would manage that - DS can be extremely aggressive when he is distressed and one of the only things keeping us going at the moment is the fact that he does sleep so at least I know at the end of the day we get a break. Also thinking maybe I should ask to try 5mg - I’m just so frustrated by the weeks waiting for appointments to try each thing.

DS is already on a cocktail of meds, including two antipsychotics, to help with mood regulation and anxiety. The idea was to introduce an ADHD med and then hopefully drop one of the antipsychotics. Is anyone else on this thread taking other meds alongside the ADHD ones? It feels as though it will take us years to find the right combo, if even such a thing exists for DS, meanwhile his childhood is passing by and our relationship is suffering under the strain.

@Custardslice3 this sounds like a challenging situation for you, but how good to hear that you’re managing to access the anti psychotics for him as some people seem to end up on very long wait lists and not able to access meds. I don’t have direct experience myself but the medication book recommended in my op covers prescribing ADHD meds alongside drugs like resperidone and you may find it useful to read. It is a very practical and easy to read book with a good index. Hopefully someone else on here will have relevant experience.

Hi, just wanted to say we tried medikinet and it didn't agree with my son. We started seeing some aggressive and very angry behaviour.
Have a new prescription for Elvanse but have been waiting for it to come in, I'm apprehensive about starting a new drug.
I resinate with your second post about their childhood passing by, I feel like we're just experimenting with medication and interventions until we find the right combination. I feel so sad for my son.

To be honest I’d run a vitamin/minerals blood test on him , including thyroid and FBC (iron panel)

not sleeping with melatonin and with all these meds would personally alarm me; surely this is related to aggression

we found a few issues with DS when we did the blood tests (privately but cost effective ) and addressing the majority has been an eye opener

Id personally highly recommend ;
while you can’t fix everything with certain lifestyle changes or vitamins , you can certain address some root causes that cause some of the painpoints

just my two cents x

@LoveMyADHD he had blood tests done 6 months ago as part of monitoring the effects of the anti psychotics - they will need to done regularly while he is on them, but regularly seems to mean maybe once a year (there is a concern about him becoming non compliant with having blood taken if we try and do it too often). The melatonin usually works brilliantly - it was just the one night when he had taken medikinet that morning that it didn't work. The stimulant effect of the medikinet was too great I guess?

Believe me, I'd rather not have him on so many meds. We have spent years trying therapeutic approaches, low demand parenting, etc, and the meds were a last resort to help manage extreme levels of emotional dysregulation. The anti psychotics have helped with that, but in the last few months the ADHD behaviours have become much more apparent and are now triggering the emotional dysregulation - it's all a bit of a nightmare, and in some ways I'd like to just stop all the meds and start again with a clean slate. I'm not really convinced ADHD meds are appropriate for him at all. But I know I can't just stop everything without proper advice from the psychiatrist, and I am also afraid of returning to previous levels of violence if we did as DS is much older and stronger now.

I hear you @Custardslice3 not easy is it 😐

stimulants might increase aggression for sure especially during rebound

problem with cocktail of drugs is they’re likely to unbalance the neurotransmitter in the brain

so adding a stimulant (dopamine agonist) with a antipsychotic (dopamine antagonist ) is likely to create chaos

how old is DS? did blood work show anything in his iron/ferritin levels or thyroid, B12?

did doc advice to stop everything and review ? Does he need antipsychotics mostly for calmness or is he having dark thoughts ?

@Custardslice3 That all sounds really tough for you all. I haven't any advice of my own but it's great to see the advice and understanding from others with more knowledge.

Thanks for the ideas @changedmyname24 and @MissHavershamReturns. I remembered that he had some roll on lavender essential oil in his sensory box so we used that last night and have also drawn a chart to count down until he's been taking it for 7 days. I'd already reassured him that side effects probably wouldn't last longer than a week but I think the visual chart has helped him accept it more. He's never had sleep issues before so I think I was too quick to assume it wasn't the meds.

I also picked up a great idea from thread #1; one of the posters was having to mix the granules with Calpol and I remembered I had sugar syrup in the drinks cupboard! So I mixed a little cocktail of sugar syrup and concentrated squash this morning and he was much happier to take the meds 👍 Small steps!

My DD 18 is on Medikinet XL and Quatapine 20mg. It's such a tiny dose, I'm not even sure it's therapeutic and it's prescribed for anxiety. She swears by it though but I'm worried she's a bit reliant on it and it's a placebo effect. I'm sorry your relationship is suffering. This too shall pass. How old is your DS? We had rough times too but through the other side now. Hugs.

@Custardslice3 Yes we did persevere with Medikinet and it’s worked out good for us. For about 3 weeks my son was talking like he had a lump in his throat and tears in his eyes. The rebound was serious. But it all levelled out. We actually medicate everyday now because we have found he is just more coherent on medication. My lad is not on any other medications but we do have other diagnosis. I really feel your hardship. I can understand your hesitation to add another medication in to the mix. And it’s hard to get good advice when you need it. One day at a a time 💐