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!

Oh , forgot to ask, do you know if it would be worth ds taking it after dinner instead of breakfast. He is more likely to eat a substantial dinner after school, as he rushs breakfast, and gets himself het up before school. I was thinking he may sleep off any side effects too.

Hi all - does anyone have any experience of Elvanse? DS is currently on equasym 30/40 mg and has having a good run of a few months then a few months of hell outbursts incidents and he’s sailing very close to the wind at school. Hoping for this to give hom a more steady time

Yes that’s what many do but sleep might be interrupted .. what did doc say?

we take it first thing in the morning on empty stomach, he has breakfast half hour after …. You might have to play around with this as well as the food he’s eating (if we give fatty food like butter it doesn’t work at all, but if we give bit of animal fat it’s perfect)

we didn’t have any side effects (if we had any they must have been minuscule as can’t remember major issues )

guanfacine calmed my kid down a bit but nowhere near Atomoxetine

Elvanse was amazing for DS but sadly made him super aggressive especially towards evening

had it myself too, had none of the aggression, gave me full on focus, have never experienced anything like that , definitely worth trying

Thanks - will have to try it as both times has moved from 30 to 40 equasym he’s been withdrawn and angry so thinking that’s not the answer 😢

oh bless him.. if stimulants make him angry, it’s worth considering non stimulant or even a combination of both

also worth looking into the breakfast he’s having , if he doesn’t have enough neurotransmitters then meds will make him angry … hence the need for good quality protein with bit of animal fat for fuel

good luck x

In case anyone is reading for meds - he’s had a great few days on the Elvanse after a horrible few months. Early days but no anger or evening moods etc as of yet

How amazing @HauntedPencil so happy for you ! Elvanse is a super drug! Fingers crossed that’s it! X

We have just moved to Elvanse 20mg (3 days so far). We were on Medikinet XL 10mg but the red mist rage was utterly horrendous and frightening (two especially scary episodes over 3 weeks so stopped, took over 3hrs each time to calm him down). We have exams starting end of next week (he is 16) so treading carefully at the moment with Elvanse. Getting up early so he can have a huge breakfast.