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Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

984 replies

MissHavershamReturns · 19/04/2024 11:10

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!

Page 38 | Starting Medikinet - any experts around? | Mumsnet

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious s...

https://www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38

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MissHavershamReturns · 29/04/2024 17:51

@Summer70 that sounds good on the dose. Does your ds have AuDHD or “just” ADHD? We went up very slowly as with autistic dc our Paed takes that approach.

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Summer70 · 29/04/2024 17:54

@MissHavershamReturns thank you. How long has your DS been medicated & has it been positive at home & school? We desperately need school to improve as constant low level disruption is spoiling his chances & ruining his self esteem. It's so tough isn't it! Such a really smashing boy but hard for some teachers to see that ☹️

MissHavershamReturns · 29/04/2024 17:57

@Summer70 we were in a very similar situation and meds have definitely helped. The medication can really work well for them and the difference for mine has been between managing in class and not.

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Summer70 · 29/04/2024 17:57

@MissHavershamReturns AdHd is the only diagnosis but I'm sure there are some blurred lines & grey areas!

noideaoffuturenow · 01/05/2024 18:45

Can I ask what dose Medinkinet XL your DC are on? My DS has been on 15mg for 1/12 now & we have definitely norticed a lot of beneficial changes. Even after the meds have worn off! But don't know what school think yet. We have a r/v soon & I'm wondering whether he's on max dose or whether it will be increased further. He's 10. Small for his age, but has maintained his weight...

MissHavershamReturns · 01/05/2024 23:01

@noideaoffuturenow my ds was 10 when we started meds on 10 mg with a 10 mg top up at lunchtime. We spent 6 months titrating and ended up on 30 mg with a 10 mg top up as the final agreed dose.

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rhubarb84 · 02/05/2024 07:10

@noideaoffuturenow my DS is also 10.

He started on 10mg, after about 6 months we settled on 25mg XL + 5mg instant release top up in the afternoon. He's been on that for 6 months now.

Whereisthesunny · 02/05/2024 10:29

Hi everyone today is our first consultation for my 12 year who is diagnosed adhd.
We would like to start him on medication as struggling at school by the afternoon so a newbie here.
Any advice what info/question i need to discuss with dr. TIA

Whereisthesunny · 02/05/2024 10:31

There seem to a lot of different adhd medication available. How will we know what’s best to start him on.
Also read somewhere about shortage of adhd meds. Is this correct?

Summer70 · 02/05/2024 11:27

@Whereisthesunny Hi good luck today. Hopefully the clinician will really guide you. They will start on methylphenidate unless there's a reason not to. It'll either be short acting or a longer acting, but either way this will just be your starting dose to see how he goes. There's lots of trial & error to get to the right point! I would highly recommend reading Prof Peter Hill book, parents guide to adhd meds. It really helped me understand what feels like a minefield!! My ds is on day 6 & after a rocky first 2-3 days things are settling well. Will need to increase dose at some point but going slowly. Still lots to worry about as it's wiped out day time dose but he's much calmer & already reports being able to concentrate much better.
Hope it goes well & take care - I've found it a hugely emotional & scary time, but now feel much more hopeful for the future

Summer70 · 02/05/2024 11:29

Meant wiped out day time appetite 🪩

Whereisthesunny · 02/05/2024 13:43

Thank you @Summer70 that’s very helpful to know. The appetite bit is a concern for me. Is that side effect for most of the adhd meds?
We have been apprehensive about meds for a while and felt we could control it but puberty and start of secondary has definitely pushed us to consider it.
Thanks again for your kind reply and will report back once we know more

Summer70 · 02/05/2024 16:10

@Whereisthesunny appetite biggest problem so far (apart from first 48 hours when he was super emotional & felt weird). He's eating breakfast & then nothing at all until he gets home from school- currently having a smoothie with whole milk, banana etc. he won't want proper food til
6 or 7 so weight loss & nutrition is a concern for me.

Whereisthesunny · 02/05/2024 16:36

Thank you. Is there anything that can be done to avoid it? how old is your son?

Summer70 · 02/05/2024 17:33

@Whereisthesunny he's Y7. I think it's the most common side effects but affects some more than others & I suppose the length of action of the drug will make a difference. My ds is on a 12 hour slow release & I wonder if he should come down to an 8 hour release to have more hours hungry! But the 12 hour covers him to concentrate on homework & go to clubs without being too OTT! How was your appt?

Whereisthesunny · 02/05/2024 17:48

ah ok i see what you mean. my son is y7 too i wonder if first year of secondary it’s more common for adhd children to end up needing meds?!
This was an initial phone consultation as decided to go private as waiting list to get referred back to paediatrician who diagnosed him, is very long.
So i was told to fill out reg form and get all adhd documents together and i guess pay the astronomical fee to have the actual appointment for the meds (unless she finds in the paperwork anything indicating that he should not have meds) which i hope she won’t.

MissHavershamReturns · 02/05/2024 23:21

@Whereisthesunny if you would like to see the analysis path that NICE has recommended for people prescribing the ADHD meds then this doc is very helpful:
https://www.nice.org.uk/guidance/ng87/chapter/recommendations#managing-adhd

At 1.7 you can read about how they are told to manage it and at 1.77 it tells them
which meds to try first.

Recommendations | Attention deficit hyperactivity disorder: diagnosis and management | Guidance | NICE

https://www.nice.org.uk/guidance/ng87/chapter/recommendations#managing-adhd

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MissHavershamReturns · 02/05/2024 23:21

My ds is Year 7 too and the medication really helps him. I hope it will be the same for you @Whereisthesunny

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Whereisthesunny · 03/05/2024 06:24

Thank you @MissHavershamReturns will have a look 😊

Whereisthesunny · 07/05/2024 10:07

My son yr7 (12) is forever in trouble for inappropriate comments (racist, sexual)
He is diagnosed adhd but possibly also Asd.
He is not yet on meds.
Does medication improve these sort of things?Those who struggled with similar has it gotten better as they started on meds?.
Also he sounds like he has a bit of turrets or something similar as in he will repeat/sing/shout same verse/word over and over again however these are mainly at home and doesn’t seem to have outburst in public unless he knows it’s safe.
Advice on any of the above is greatly appreciated 😊

Whereisthesunny · 07/05/2024 10:08

Just to add these signing shouting is worse when he copies a rap song as it always somehow contains explicit words 😕

Summer70 · 07/05/2024 13:29

@Whereisthesunny my ds doesn't tend to have much of a problem re what he says, so difficult to comment. He tends to act without thinking - so silly behaviour in class, irritating friends or sending something inappropriate on his phone. Really happy to report that already hie is saying that the meds are helping him to think before he does. He's far from a model child, but still on a low dose. It seems to have taken those 'rough edges' away & the day seems a lot smoother x

krobhix20 · 08/05/2024 09:23

We are 2.5 weeks into Intuniv. We've titrates from .5mg to 1mg and have now been doing 2mg for the last 5 days. We are seeing our first side effects now on 2mg of tiredness. Trying to remain hopeful that once his body acclimates to this dosage we will start to see results. So far we haven't seen many positives. Trying to stay the course and stay positive.

HauntedPencil · 08/05/2024 13:26

Whereisthesunny · 07/05/2024 10:07

My son yr7 (12) is forever in trouble for inappropriate comments (racist, sexual)
He is diagnosed adhd but possibly also Asd.
He is not yet on meds.
Does medication improve these sort of things?Those who struggled with similar has it gotten better as they started on meds?.
Also he sounds like he has a bit of turrets or something similar as in he will repeat/sing/shout same verse/word over and over again however these are mainly at home and doesn’t seem to have outburst in public unless he knows it’s safe.
Advice on any of the above is greatly appreciated 😊

My son had a few things he would do, beat box loudly and (annoyingly) at school and at home - it stopped that completely.

He gets the zoomies in the after school period but generally that's more manageable as it's not in a class environment

HauntedPencil · 08/05/2024 13:27

Wondering if anyone had heard anything on the meds shortage? We've had real issues with Equasym this month, he's had to have Medikinet 40mg which we haven't had before so am nervous