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!

Forgot to say, she is 10.

@Falcon1 I'm so sorry to hear you are going through this and that sounds like potentially a really bad side effect for her. It’s so strange and confusing for us as parents how the medication impacts them all so individually. Going on Medikinet has really significantly reduced my ds’s meltdowns (were several daily at school but now more like one every few weeks) but clearly that isn’t going to be the same for every dc.

Is this a private provider or NHS provider? A couple of thoughts on how to get them to respond to you (from personal experience some consultants I know can be very hard to track down!) I’m sure you will have tried all these anyway. If NHS call the hospital and ask to be put through to the consultant’s secretary and ask for her email address. Put your concerns in writing and also on the phone/voicemail to the secretary. If there is an ADHD nurse at the setting where you are seen get their number and raise your concerns/leave a voicemail. Go to see your GP and ask them if they will write to the consultant. If private get details of their secretary and contact them. If necessary reach out at another private setting where they have a PA and leave a message with that PA as well.

@Veebs21 have been thinking of you and wondered how things are now?

@Jedstre we didn’t do RTC we did private all the way through, because we thought if RTC wouldn’t give us meds we had to do private to get them and ds needed them very urgently as he was in crisis at that stage.

@Jedstre I’m sorry you also have refusal of shared care in your area. We also have this locally where the nhs locally has recently said they won’t do shared care for private adhd medication and that they won’t allow people with private diagnoses to go into the medication queue for consultants clinics. So here now if you go private the GPs quite often refuse to issue prescriptions for the dose stabilised by the private consultant.

You also have to wait the full three years here to get to see the nhs consultant clinic even if diagnosed privately , as they put you in the same queue as undiagnosed patients, not those who are diagnosed and waiting for medication.

ADHD UK has some advice I think on how to challenge these refusals of shared care, so might be worth looking at their website.

@LoveMyADHD just reading on how your elvanse/clonidine have been going and it sounds as though the current meds are working really well. So pleased to hear this as it is such a relief I know when you have them on a regime which works well for them! Keep us posted on how it goes over the next few weeks and sending you lots of support.

@LoveMyADHD ah that's fantastic news! Long may it continue

Yes im thinking whether to add it in to cover when DS' meph has worn off. My dr is keen to just leave as is for now as DS is doing well, but once the meph has left his system he is a bit irratic again so wanted to cover that iyswim

Thanks @MissHavershamReturnsits actually a private provider. They were good at the start so don’t know what’s going on. I’ll call again in the morning

Just wondering if anyone has experience of 40mg XL Equasym?

DD seeing the psychiatrist on Thursday and is keen to ask for a dosage increase and to stop taking breaks.

She's on 30mg at the moment and it's working really well and zero side effects beyond not feeling hungry between 8am and 5pm (makes up for it after that!)

As Equasym XL comes in 10, 20 and 30, I assume she would just take two of the 20mg in the morning?

Having a complete nightmare getting the 30mg tablets - I rang EIGHTY THREE chemists a few weeks ago trying to get her meds and managed to get half the prescription. She starts GCSE exams next week so I am quite concerned if I can't get enough medication to see her through.

Has anyone tried doing 2 x 20mg and a 10mg in place of the 30?

how old is DS? You give stimulants in the weekends or is it just the evenings that he’s irratic

DS is 13 and him being a mess in weekends has an impact is school prep etc plus he still had the anxiety even on the stimulants so we had no way out !

you can defo get doctor to prescribe even for two weeks to trial out !

perhaps she has too much dopamine; if Elvanse doesn’t work it’s likely this is the case, but non stimulants would be great

please can I ask, you’re a patient of a private practise and they’re not coming back to you? Is it a private clinic or a doctor working by himself?

It's a private clinic

Sorry, posted with my other username

Wow it’s a private clinic and they behave like this?

honestly I’d tell them nice and clear they either help out or you ll give a lovely google review !

another thing you can do assuming you have an adhd assessment report, you can go to any other private clinic/psychiatrist and they ll take your case straight away!

@Falcon1 we have experienced the same with a private clinic. Not for a month but it being very difficult to get hold of people. In the end I called round other private clinics where they worked and spoke to each PA saying I needed an urgent call back and this worked.

That’s good to know, thank you. I’ll get on the case tomorrow

@LoveMyADHD he's 7 and has his meds every day so it's just the evenings that i want it to cover.

I might speak to his dr and see if he can trial over the summer x

It’s not as dramatic as strattera you can definitley try now in low dose as it could calm him down
But obviously if behaviours not the worse summer looks great
good luck x

Wow, pharmacy ran out of Equasym XL so we were given Medikinet XL instead, and I can’t believe the difference!

DS has been completely manic and unbelievably grumpy! I guess it could be coincidental but it seems likely as it’s directly correlated with the change.

anyone else had this and did it settle?

@CoffeeCakeAndALattePlease we had this and it did settle. Not from changing as we were on medikinet at the start, but I think it can be a side effect.

@CoffeeCakeAndALattePlease someone up thread posted this very useful guide to switching in case you haven’t seen it before https://www.choiceandmedication.org/awp/generate/handyfactsheetmethylphenidateswitchinguk.pdf.

As I’m sure you already knew, the release timing is different between the two meds.

It says about switching generally “Switching products or Type could unsettle you
• It could affect your sleep“

Hi all, we have recently switched from Medikinet XL to Equasym XL (both 10mg). Reason for the switch was because school reported that DS was quite subdued the first hour or two of the day, so we thought that changing to a different release profile would benefit. However, school have reported major increase in behaviours since switching - lots of hyperactivity and defiance, similar at home. And his sleep has become horrific! Has anyone else experienced anything similar?

@needaname19 I’m so sorry to hear you are experiencing this. I haven’t made this switch but hopefully someone will be along in a minute who has.

How long ago did you make the switch? You might find the link to the switching document I’ve just posted above useful. It does say it can impact sleep and behaviour to switch.

@MissHavershamReturns
thanks for the link. It’s so frustrating that we’re at the mercy of what is available and just have to tolerate the side effects. I really hope things settle as DS is being exceptionally unpleasant and I’m trying so hard to be patient as it’s not his fault but blimey I’m at the end of my tether.

thats so awful

did you try other pharmacies ?
did you try boots stock checker ?

did the pharmacy say if they could order for you?

x