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!

@Theonlyoneiknow I’m so sorry to hear you’ve had such a difficult time.

My son age 14 also has medkinet XL in the morning (after breakfast) and methylphenidate at lunchtime (after lunch). Usually the methylphenidate is taken then to smooth the Medikinet coming out of their systems as it is more a morning release medication. You probably need to check with the prescribing dr/their secretary when to take the methylphenidate.

Thanks @MissHavershamReturns I have managed to find the letter, it states to take the methylphenidate 5mg at 4pm (as required) so I guess on those days when he is at a club or tutor. Did you notice any significant changes to your DS behaviour when he started taking the meds? My dad recently passed away and i'm having to sort out his estate so my stress levels are sky high at the moment :(

@Theonlyoneiknow yes in short and for the positive. If you read through thread one linked in the op you can read our journey and those of lots of other families who have kindly shared here

Hello! I wonder if anyone can help. My 15 year old DD is taking Elvanse and it is working well. Currently on 40mg. How do you know when the dose is right? Dr saying she can go up to 50mg, but 40mg seems quite effective. If we go up, we need another private review on 8 weeks, or if we stay on 40mg we can move onto shared care agreement. Any thoughts appreciated

Totally based on feedback , if doing good at school I’d keep as is

when we were in Elvanse we went about to 50 but the aggression was brutal 😣, so if this works I’d take it !

Can I ask for some advice please. My 15 year old daughter started mefylnate XL (methylphenidate modified release) last summer. She continues to have palpitations shortly after taking the medication. It wears off after an hour or so but can be disruptive at the start of the day. She describes her concentration as being better in the mornings but at the expense of a racing heart. The effect of the medication wears off by afternoon. I’m not sure it’s the right medication for her but it’s the first one we were given and have just stuck with it. For context she was diagnosed by Psicon via right to choose and they continue to prescribe. Any advice or thoughts? I’m going to arrange a review as it’s been a few months since the last one.

So, we have been "trialling" 10mg Medikinet XL now for 3 weeks but unfortunately the rage and agression is unbearable in the evenings. Last night was off the charts, it took him 3 hours to calm down. It hasn't been every night, I would say in 3 weeks there has been two 'off the charts' rage and a couple of other situations where it was very close. His dad and I were scared and so upset last night, there was absolutely no way of calming him down (he's 16). He was being utterly vile to us and also scaring his younger sister.

The paed. prescribed 5mg of Methylphenidate to take if he has a tutor or something but we haven't used that yet - would that make a difference?

Either way we have stopped for now as there is no way we could go through last night again. I am so stressed, haven't slept. I know there are other meds we can try but I'm so fearful of that rage happening again.

I’d personally push for meds review , for me heart palpitations wouldn’t be great and if you raise it’s likely she’s seen asap

You can try to give vitamin C as soon as he comes home (it detoxes the drug quicker )

we give Berocca as soon as he comes in , if we don’t he doesn’t even sleep so it’s definitley working on detoxing

vitamin C makes urine acidic and in that case the drug is excreted from the body quicker

just a thought …

Thanks @LoveMyADHD, over the 3 weeks we have been trailling the meds, it hasn't impacted his sleep or really his appetite - he's still been having lunch pretty much as normal. It's a pity as his focus has been better at school but there's no way we can go through that anger (almost like borderline posession) last night.

Yes we’ve gone through this sadly with Elvanse (proper aggression !)

with Medikinet his rebound looks more like psychosis it’s really odd and shows you how these drugs impact the brain but vitamin C has helped massively, it properly removes the drug from the cell

. Because it’s been so good for your son’s focus I’d personally try one more time with perhaps lower dose and would give Berocca as soon as he comes home

please can I ask do you give vitamins/minerals ? ADHD stimulants are renowned for depleting Magnesium and you ll get nothing but aggression in this case

we give Magnesium in tablets form (glycinate), spray on the legs, and liquid same time as vitamin C

really urge you to look into this, it might help him a lot x

I am going to arrange a review. I’m interested in what people on here think might be the next step or an alternative I could suggest. What prompts a switch to non stimulants for example. I fully appreciate no one can give definitive advice but some thoughts would be great.

This could prompt a switch to non -stimulant

we are on both stimulant and non-stimulant and we moved to the latter when stimulants alone were not enough to address focus issue

heart or BP issue though could trigger the switch much sooner rather than trying another stimulant like Elvanse

Thank you so much op, I really appreciate you letting me know this thread is here, as I am feeling very down about my son. At 9 years old he is going through far too much. I am at my wits end. Hopefully I'll see a post about none stimulants with a high functioning AuADHD combined profile.

Welcome @AnEnigmaAndHope there are so many of us on here who have dc who started at this sort of age and who have dramatically improved quality of life as a result. Mine is AuDHD too (would probably be described by some as HFA) and started meds in late primary and is doing so much better (now in secondary!) as a result. We are on stimulants so I can’t comment on non stimulants but others here have dc who are are on those. I would really recommend the book on ADHD medication which is mentioned in my op.

I really hope you find the thread reassuring and that things start to improve for you and you ds soon.

I would also be interested to hear any experiences of switching to non stimulant. In our case DS (18) has tried medikinet and Elvanse, both improved focus but both caused anxiety and feeling down in the afternoons (medikinet more severe). He’s not keen to continue Elvanse but with alevels looming I wonder whether it’s worth trying non stimulants at this late stage. Any thoughts welcome.

Me too, we have tried many different brands, doses and durations of Methylphenidate. Dh, and I are not wanting to try him with any other stimulants such as Elvanse. Seeing ds's nervous system reaction, the mechanism is just completely wrong for him. We have an appt next week, and I am hoping CYPS will be willing to let us trial a low dose none stimulant. I don't want ds to get med refusal and nother stimulant will undoubtedly cause it. I also feel some CBT would do him good to target his anxiety, and RSD.

Just popped back on here.

Further to my last post we have nixed the non stimulant and just having dexampthamine.

However DS is also doing primitive reflex integration and that has started to help MASSIVELY with his Cognition and general adhd-ness

So for now im going to build on that and not change meds until summer

Wow this is so amazing !

just googled it , I had no idea about this !

are you going to a specific practitioner, you following a book/channel etc?

please please share more info ! xxx

This is really outing so dont google my other posts haha

We are going to Dr Sarah Baker in Twickenham as we live nearby.

There's a documentary on amazon prime called Attention Now (or attention please) that's all about it. Im not usually at all into alternative things so was not sure at first but I have seen amazing results.

https://m.imdb.com/title/tt8300406/

This is the documentary
Sarah was trained by the main guy in this, I believe he actually works somewhere in Surrey or Sussex but Sarah is much closer for us.

He previously wojld go mad if I tried to get him to swim under water but after starting this is (semi) loves it

OMG you’re amazing !! I ll be all over this !!

im super close to twickenham too 😉

cant wait to hear more updates xx

Many moons ago I chatted to @MissHavershamReturns but otherwise am a newbie to this thread with a specific question that is hugely stressing me out! I wondered if anyone had experienced this or could help given the wealth of adhd posters on here.

DS is 10, super tiny and we have been trying guanfacine. Long story short we titrated up and then down and have played with dose time.

My question is has anyone had any experience of their child accidentally crunching it? I know it should be swallowed whole but I cannot guarantee with DS that this will always happen and google says this is very serious!! I have just typed and then lost a full post about an awful day this week when DS was manic after taking it and I am wondering if this is what had happened?? Any thoughts massively appreciated. Surely this must happen occasionally to people?? Online advice is very scary…

Oh sorry for awful time @carriebradshawwithlessshoes - we used to be on guanfacine and the thing with all these slow release is that if you chew them they all release early not slowly

is there any way she can have a massive glass of water to ensure it goes down at once ? Otherwise you might need to swap your another medication which they can make in liquid form like Atomoxetine