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!

Just letting you know our consultant said most kids are on 4mg

we went up to 3mg since 3 weeks ago but DS is getting a bit spaced out in the weekends so we just asked to go back to 2mg; behaviour wise he’s great but it doesn’t help much with homework focus if he’s getting spaced out

but… school feedback has been fantastic as the morning stimulant counteracts that lethargic feeling

you do need to give a good 5 weeks on steady dosage to see the effect x

Are you in london? I’m pretty sure our pharmacy stocks it x

@LoveMyADHD that's helpful to note. We are getting better reports from school so at least that's something.

@HauntedPencil its looking like beginning of June

@HauntedPencil

Ah thank you. I'm due to reorder mid month, it's taken weeks to get the Medikinet I've gone through 3 scripts being changed for various strengths not in stock.

I hope that's it now this is the second time this year!

So we had our six monthly review last week (we are a year in now) and it was really interesting!

Our DS (9) is on 30mg Equasym XL. It lasts all of the school day but he can have a top up if he needs one. He hasn't put on much weight though and so that is a concern of ours.

The Dr wasn't too worried but suggested we try doing 10mg at the weekends rather than 30. We have previously tried breaks but it wasn't easy to get back to 'normal' after them. So this weekend we will try that and hope his appetite improves. It should still take the edge off for him though.

The other thing she suggested is to give him his top up first thing. It's very fast acting and we all struggle with him waking up at 5:45-6:15am every morning and being absolutely ridiculous from the moment his eyes open. So past two mornings we have left his top up by his bed and he takes it himself when he wakes up. THE DIFFERENCE this has made us huge! Mornings are not awful now 🤪🙌🏼.

Just thought I'd share!

@user134276 that’s great to hear that the mornings are more settled.
We are getting to closer to starting meds.
We have a consultation at the end of month with a private practitioner and it suddenly dawned on me that i haven’t done a lot of research on them.
As things are so desperate at the minute with school struggling with him, i went with whoever offered the sooner appointment.
I know working out what meds works for your child is a trial and error but can it hugely differ from how they are started off?
Is there anything i should be paying particular attention to when they are working out first dose and what meds to start them on?
Im suddenly panicking…

no need to panick 😎

they ll most definitely start with low dose methylphenidate (Medikinet or equasym etc) which is likely not to work so they ll be increasing the dose ; it could be every few days or every few weeks/months depending on how responsive your consultant is

key thing is you agree with school that they provide feedback (based on timings to understand when med wears off or works best) and monitor weight/growth as sadly this is impacted

dosage can only change based on feedback and weight

it’s unlikely that this medication doesn’t work, in which case they move to other stimulants (or even non stimulants )

one limiting factor for meds is the amount of protein he consumes in the morning (research in this might be helpful)

good luck it’s great you have an appointment x

Thank you that’s very useful. Any useful material to read up on meds?

@Whereisthesunny if you order the book in the op on Amazon it’s amazing. Very clear and explains all the meds.

@MissHavershamReturns which book is that?

I have just started reading ADHD 2.0 seems to have a lot of great reviews. So far so good

@Whereisthesunny - it’s this one in the OP: 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.

Medication wise and for just general information when my DS was diagnosed last year, we listen to podcasts as I found them easier to digest.

I really recommend this one (hoping photo attached!).

I also listened to anything with Dr Russell Barkley in it. He's v knowledgeable and easy to listen to as well.

Thank you both. I’m not a big reader (as ironically finding it difficult to stay focused 😁) so after reading ADHD 2.0 i might just have to go with a podcast to take a break so very useful.
Thanks again @MissHavershamReturns and @MissHavershamReturns

Hey guys are we all ok? Medication wise we are doing brill but school wise is appalling, DS was suspended for 45 mins on Friday for getting over whelmed after another child stole his football and he cried under a desk. Hes been schooled by himself in a room since January. Been denied two specialist school places as he's been deemed not suitable, but current school say they can't have him in year 3.

I'm so tired of it all.

@AndrewGarfieldsLaptop I am sorry to hear things are so difficult. It sounds really hard. I'm a teacher so can I ask you a few questions? I may have some advice.

Why did he get suspended? What was the point in the 45 minute suspension? Was it dealt with properly and really recorded?

Does he have an EHCP? What reason have the specialist schools give for being not suitable?

I imagine you are a member of one of the many amazing SEN Facebook groups that are out there but if not, I urge you to join.

Parenting a child with SEND is really really hard.

Sorry to read this - my son got a days suspension last term - first time ever. I was told that this would potentially help to access him more help in the future and that he wouldn't have wanted to go in the next day anyway (which I suppose was true)

Hello!!

He slammed a door 🙃

Sorry pressed send!!

Yes he slammed a door, and it's been placed on his permanent record and emailed to the chair of governors. He's got an EHCP, but the two other specialist schools deemed him "not divergent enough" or words to that effect.

I feel like we are inbetween a mainstream and a specialist. I'm so tired.

My son has had 5 suspensions varying from a door slam to crying under a table. His first one was in reception at age 4, and it was because he wet himself and couldn't stop sobbing.

Anyone who has experience with Adhd and ODD. One of the info i read is that adhd meds often help with adhd but make other symptoms such as anxiety odd, ocd worse.
Anyone noticed this?

Wheresisthesunny..yes. In the process of uptitrating DS Medinkinet XL. He has PDA profile Autism (I think anyway). Ticks every single box on the PDA Society website. Incredibly controlling and anxious/explosive if he perceives control/choice is being removed. With everyday ADLs-toothbrushing/where/when to eat/getting dressed etc etc etc. But-very sociable and very bright/able to mask highly and use lots of strategies to avoid demands. I've been using PDA 'low demand' strategies for years and he and I get on great-life is way more peaceful. DH on the other hand finds it hard to drop the authoritarian dad role and the explosions between them & one sibling especially have been worse since medication. However, the contrast between our parenting is becoming greater and DH is definitely developing an understanding of how to reframe his language & avoid the confrontations. DS on meds finds life easier; school feel it has improved focus. His 'damaging' or more anti-social tics/stims have decreased-waaaay less lip licking/skin picking/nose picking. He's a happier child in general and has told me he wants to stay on meds. So-for us it's about working out strategies to cope with the more prominent Autistic traits.

Thanks for this i was in particular interested in the ODD trait as listening to a podcast about meds it suggested it would make it worse while the adhd would improve.
I suspect that ds has ODD although he isn’t officially diagnosed with it and major issue at school his attitude and relationship with authority figures. Over the years in primary they worked this out and created a lovely relationship where he felt comfortable knowing the rules and respected them and the people. New (young female) teachers he always had a problem with.
Currently in yr7 he has had lots of issues with teachers but Senco are dealing with and recognised the pattern.
We are waiting to start the meds but what i heard today is making me slightly worried about how beneficial it will be for us overall.
He is diagnosed adhd in terms of outburst and regulating his feeling but recently also noticed issue with concentration hence we are looking into meds now.
He was also queried Asd but we feel it’s not limiting his life like adhd does.
Fingers cross the pros will outweigh the cons

Ds just been prescribed medikinet XL 10mg for a week then move on to 20mg. Feeling a bit apprehensive but really hoping it will make a difference 🤞