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!

@MissHavershamReturns that’s so disgusting !! Yes ofc I ll sign !!!

@impossibleimposter meds side effect for sure… thats not a brand thing, I think this is a mechanism/formulation thing so perhaps look into Equasym or Concerta that deliver same med in a different way ?

@LoveMyADHD thank you so much! I’m so upset about it tbh! I know you will but please share with everyone you can think of.

Heads up that Concerta is apparently available in all dosages and formats.

Equasym - even offering your first born child doesn't get you a box.

That’s just awful!
apart from cutting down on £££, what is the official reason behind this ?

Haha this made me laugh!!!

is it due to demand! Is Equasym so much better than the rest?

fyi I’d be super happy to offer my first born! Especially this half term , where he’s unmedicated and bloody pain!!! 😣

Global stock shortages.

I even called the manufacturer last month and asked if there was some special ingredient that had to be picked by virgins in the depths of the Amazon rainforest at full moon.

They seemed a little thrown by that concept... but apparently not.

I suggested that if they made some more then they could make a lot of money...

Meanwhile I now have a list of chemists I do the rounds with.

And yes to offering unmedicated first born - especially at half term. I feel your pain!

Wow !! Shows you we re at their mercy!!

i remember you said you were in the middle of exams! I hope all ok now ?

Psychiatrist has increased the dose to 40mg - and it seems 20mg capsules are easier to find than the 30mg ones.

I asked him to include in the letter to GP that if I can't get Equasym then they can issue an Rx for Concerta just to cover all the bases.

I found a pharmacy that has given me one box and will send the rest when they get more stock.

DD is having a play around with the 40mg v just 20mg. She thinks the higher doses may give her more focus but also make her more emotionally on edge so wants to try and work that out via the 20s, 30s and 40s.

A friend couldn't get Equasym and has tried a 50/50 with better results, so DD interested to try that at some point - I've said NOT in the middle of exams.

So far all good with the GCSEs - or at least no meds issues... Geography Paper 1 was always going to be awful not matter what she took!

Ah @OhCrumbsWhereNow bless can’t imagine the stress!

hoping you’re sorted till exams end at least !

This isn't meds related but I just wanted to ask how those of you with 1 ND and 1 NT child parent. I've poured so much energy and fight into supporting my ND child that I'm worried I've not done as much for my NT child. Also, my NT child has a habit of trying to parent my ND child and it's really irritating me. He's only 4 but acts like he knows what's best for his older brother and its starting to cause sibling conflict. Our ND child has a speech delay and socially is behind. Whilst our NT child was an early talker and is extremely confident in his use of language. So I guess I'm just trying to see if anyone has any advice to readdress dynamics.

@YearLongChristmas we used to think we had one NT and one ND but latterly it became clear in fact both ours were ND. They now both have different dx. However, dc1 is much more obviously ND than dc2. We have had some similar challenges!

We tell our dc2 that it’s not up to them to criticise or tell off dc1 and that’s not appropriate. We have a rule on that for both dc.

We also went to a siblings workshop which both dp and I found very useful. They emphasised allowing dc2 to explain the hard bits about being dc1’s sibling. Our rule is they can do that at any time provided dc1 can’t hear and we empathise and allow them to sound off eg about how embarrassing to them the stimming is. We also generally keep emphasising that stimming etc is totally ok and we are very ND affirming, but the workshop said it’s not fair on siblings to pretend it’s always easy.

I’m going to try to link a resource I saw recently.

I forgot to say @YearLongChristmas the workshop all said it’s really important to build in regular one to one time with the sibling. We don’t always do well at this.

This isn’t the charity we went through for our parent course aimed at siblings, but it looked good when I saw it recently @YearLongChristmas

siblingsupport.org/sibshops/

@MissHavershamReturns oh I have no doubt NT 4yr old will most likely be ND but at present hes not showing obvious traits like his brother did. Thank you though I just didn't know where to start as they are so different and have been challenging in different ways but a lot of time is spent with our ND child and supporting him we didn't really consider a) impact of having his siblings on him b) how to parent between them both that is boundaries and respectful. I have wondered how my 4 year old views his siblings when he stims (his current one is asking for everything and anything for his birthday on repeat) or the fact that they can't really have a back n forth conversation together. So I would like to explore a course/ space for him to let us know how it makes him feel. So thank you.

Hi All,

I'm an "imposter" here but hopefully someone can advise: my son, aged 11, is on Medikinet 20mg. Neither we nor the school see any difference in him while on it. He fights us every day about taking the tablet - he says it makes him feel sick in the mornings. He won't eat a breakfast before school, so that doesn't help. CAMHS re-did the QB test recently and that showed though that the meds were working - he's usually a ball of anger when he gets home from school every afternoon, and then retreats into his room on playstation for the evening. CAMHS don't listen when I tell them about the nausea and the fact that we don't see the benefits of the meds. Any words of wisdom about whether we should persevere with this tablet, or ask again about switching to something else? Thank you🌻

@dandeloin 20mg could be considered low (it wouldn’t touch the edges for DS at that age)… personally I’d ask for an increase and if it doesn’t work then ask for Elvanse

Medikinet ensures whatever dopamine your son has, it stays up there in the brain. But if he doesn’t have enough it wouldn’t do much. Elvanse does the same but also forces the system to “produce” more dopamine so more effective hence more expensive
x

@LoveMyADHD thats interesting about the other meds being released in a different way. Can you give me any more info? My DH is on Elvanse and he doesn’t think he is less sociable or anything whilst on the meds - in fact I think he finds socialising easier whilst on them.

True Elvanse is better in most cases, but it’s a tricky med to manage; it’s said when people give up on Methylphenidate it’s due to not working but when they give up on Elvanse it’s due to side effects not because of lack of efficiency

also we found Elvanse’s efficiency massively depends on how you take in the morning (with food or without, how many minutes before or after food etc)… but overall for us at least it’s better, but definitely needs managing !

If you haven't read it, definitely order Peter Hill's 'Parent's Guide to ADHD Medication' as he covers all of this.

DD's psychiatrist was fascinated by some of the info I got from that book - I recommended it to him too!

I’m thinking of asking the consultant if DS can try a non-stimulant in the afternoon as he crashes so badly at 3:30

we're trying to get school to trial after school club but I worry about him dysregulating there and struggling. He manages holiday club 9-5 ok but a school day is more tiring for him.

anyone’s DC have a slow release stimulant for the school day then a top up of some kind in the afternoon?

We have 5mg Tranquilyn for top ups in the evening, but she gets coverage from around 8am to 5pm with Equasym so don't need them that often.

I've not heard of anyone mixing a non-stimulant with a stimulant.

DS is covered 8-3 ish with the Equasym (although they’ve prescribed Medikinet for now as no equasym available) and crashes badly. The rest of the day is unmanageable.

I’ve read about people doing both rather than taking a stimulant too late in the day. But not spoken to anyone who has done it.

or perhaps he needs a higher dose of Equasym / Medikinet and maybe that would help. It’s a bit of a minefield.

What's his current dose?

DD is supposed to be on 40mg XR but has shifted down to 20mg as feels a bit jittery on the 40mg. She says she's sacrificing a bit of focus but thinks overall better.

The Medikinet is giving your DS a 50/50 dose release rather than the 30/70 of Equasym.

He was on 20 equasym and now on 20 Medikinet…. I was wondering how much the 30/70 v 50/50 was affecting him.

we had already asked about going up to 30mg as his symptoms weren’t as well managed as they used to be….. he’s growing so fast which I guess impacts on that.

now it’s hard to tell if it’s the dose or the release rate.

@CoffeeCakeAndALattePlease love your username !!

the bad crash in the afternoon could be dose is too low , or Medikinet itself causing awful rebound to some kids (one of the reasons we changed to different med)

you can certainly combine non stimulant with stimulants, you can do this with Intuniv and Clonidine while on any stimulant medication

you cannot do this with Strattera . We ll try out this med on summer holiday and the doc doesn’t let us have any stimulant for 8 weeks but its supposed to be the strongest and most effective than the other non stimulants

while a non stimulant will take the edge off, the rebound will always be awful if it’s actually caused by a stimulant ; so you might as well change meds tbh