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!

Yes, he gets extra time, a scribe/prompt, movement breaks, a room of his own & the option to use a laptop. I turned into Tiger Mum & demanded everything they could think of 🙈🤣

You need to and it’s great that you do. It levels out the playing field for them!

Placemarking. Thanks SO much @MissHavershamReturns for setting up thread no.3.

at the moment I am battling with my own feelings of inadequacy - feel like I am always shouting at DS8 to stop doing things (eg putting scissors in his mouth, running across road without looking etc.). I hate the sound of my own voice….

@MissHavershamReturns thank you so much for new thread !

@Hels20 we re here to support (can’t stand my own voice either!!)

we continue to have good progress with guanfacine; feedback went up at school consistently for a week plus after being awful for whole last term . Only thing we changed is adding guanfacine and using short release Medikinet instead of slow one so fingers crossed it ll last for a while at least

doc gave us a prescription for concerta but will wait for couple of weeks to give guanfacine more of a chance!

sending love and support to all x

My ds will be 8 in Sept. He's quite tall for his age (but a bit underweight) and we suspect the 10 mg medikinet that he's been on for a year with good success is becoming less effective. He's calm in the mornings but after lunch time he's climbing the walls at school. He is also autistic. I'm concerned the school will start calling us in on afternoons to administer a booster if his afternoon behaviour continues. We did completely stop the medication during Easter so not sure if his body is taking time to readjust to the dosage.

@MissHavershamReturns thank you for creating another thread.
As some have said I read everything but at the moment touch wood my DS is stable and thriving on 20mg Medikinet XL. He is growing height wise and his weight is steady.
We finally got a place for him at a Low COIN provision via EHCP process only to be told this week when he was meant to transition over that there is no capacity for him. It seems its a Council / School finance issue so let's see if it gets resolved. DS was very much looking forward to moving schools and I was looking forward to him having 50% of his day in a much smaller and calmer environment. Alas the journey continues...
I feel for everyone experiencing the affects of the medication shortage. Wr are fortunate that Medikinet is effective for our DS and we do not do med breaks anymore as advised by our prescriber which has actually meant DS is a lot more stable and happier across the week.

We are 3 days into 1mg of Intuniv and have seen some decent progress. He's had 3 good days at school. Hoping that the medicine combined with incredibly low demands will get us back on track. We've been asking the school for months to reduce all demands and they fought us on it. He's in a specialist base with only 3-4 other students so it shouldn't be difficult but they were making it so hard. Finally after he reached complete burnout and started causing BIG problems at school they finally relinquished. For the moment I am feeling ever so hopeful again.

@krobhix20 that sounds like great progress. I’m so sorry to hear you had such a struggle to get them to reduce demand but I’m glad you got them to see sense in the end. I know exactly what you mean about that feeling of hopefulness when things start to look up. You sound like an amazing advocate for your ds. It can be quite an emotional rollercoaster trying out the medication especially with everything else we ADHD parents are contending with day to day!

@YearLongChristmas really glad to hear the meds are going so well. It’s worth looking into whether you can appeal to tribunal to push for admission to the school. I know someone who did this having been told there was no space and they got a place. I really hope you get the school placement sorted out soon.

@klayton I’m sorry to hear you are finding medikinet may be getting less effective. We were also finding this, but a few week and fortnight long med breaks in the holidays seem to have really helped. Will school definitely not agree to give the top up? We were worried about this but our school was willing.

Lovely to hear from you both @Hels20 and @LoveMyADHD . I’m also in the not liking hearing myself camp - in my case seems to be a lot of do this, do that

@Hels20 have you read the Dr Jo Griffin book in my op by any chance? I know it seems odd that reading a book could help but it really has been transformative for me. I don’t know if this helps at all but every time I read your posts I see a lovely mother doing her very best for her dc. We are not able to get everything right all of the time and I certainly don’t, but if we are doing the best we can, all are clothed, fed and safe and know they are loved, then this is enough. Anything else we deliver is a bonus. SEND parenting can be emotionally exhausted and all of us who continue to show up day after day and often through total emotional and physical exhaustion are heroes in my eyes

Just catching up with everyone’s messages!

@TeamPolin we used to avoid breaks entirely in term time. That was because they were so dreadful for ds (also autistic).
Then after a year with only one 2 week break in the summer things happened. He became underweight and meds started to work less well. So we were told breaks were non negotiable.

We don’t do weekend breaks as ds can’t cope with them. We do breaks for three days every half term, at least a week at Christmas and Easter and at least two weeks in the summer. For longer breaks we taper on and off as ds can’t cope with going cold turkey. He becomes incredibly tearful. So what we do is 40, 30, 20, 10 (we have both medikinet xl 30 capsules and methylphenidate immediate release 10s for top ups), which works well for us and then we taper back up usually 10, 30,40. So you could ask your doctor about tapering on and off to see if that helps.

@krobhix20 I don't understand why schools do this. My DD attended a high attaining state school in Scotland and I asked them to reduce her Nat 5s from 8 to 7 or even 6 and they said they wouldn't support that 😡To this day I don't know why, when I know they reduce the timetable for some kids. We didn't hang around to find out and changed her school.

Thought I'd share something (mildly) interesting from yesterday...
I took DC to local science museum.

Weekend so DS was off meds. And oh my, could you tell! Interrupting, not listening, forgetting instructions, doing daft things. So he was very ADHD.

And at the science museum they had a game where 2 people wear headbands that measures brain waves and whoever has the most 'relaxed' brain waves wins.

First of all I played against DD, who is very not-ADHD. I 'won' easily. So I thought maybe it's an adult vs child thing, adult brain is more relaxed? But then DS appeared, and he beat both of us. ie his brain waves were reading as far more 'relaxed' than either of us (even while DD was poking and tickling him to try and make him lose)!

So I was wondering if we were in fact seeing the difference in ADHD brain wiring live in action?! I might be wrong but it was definitely curious.

So when DS was 4.5 and we were experiencing super challenging behaviours we had a brain scan done that tracks brain waves and it showed that his Alpha brain waves were a bit slower which can indicate sensory processing, poor declarative memory and semantic recall (facts & figures including names). It also showed that his ratio of theta waves to beta waves was really high. 10:1 ratio where as typical is 4:1. The theta vs beta ratio is a big indicator of ADHD.

So yes you were seeing the ADHD in real time.

Wow @rhubarb84 and @krobhix20 that is so interesting! I believe I also have ADHD so would be fascinated to know what my brain is doing.

@krobhix20 thanks, that's really interesting. I think it was measuring alpha and theta waves.
DS was quite cheered to see actual scientific evidence of his brain being a bit crazy!

I am very pleased to report that we finally have the correct medication 🎉 Was so much harder than it should have been though.

Also, DS had a little belated party to celebrate his birthday today, at a trampoline park. A little group of 4 friends (2 couldn't make it), who seem to just accept him for who he is & even look after him. The first friends party he has had in years 🥰 I'm sharing with you because I think at least some of you will realise how massive that is for a child with autism & ADHD 😊

@changedmyname24 that is absolutely lovely! So glad he had a good birthday and has accepting friends around him. As another AuDHD mum I know how absolutely huge that is and it’s great to hear he had such a good one. So pleased also to hear the meds are sorted.

Hi all, pleased to find this page! Ds 11 started Xaggatin 18mg on Saturday- I had high hopes but have had 2 days of tears & emotions in the morning, a calm & quiet afternoon & then huge emotional evenings. No food for 12 hours & full of horrid energy until midnight. Says head feels really horrible & not right. I've phoned the prescriber this am who says too extreme a response & to stop. He's going to switch to medikenet XL at the weekend. Had anyone experienced similar? Like you all, just desperate to find something that makes school achievable & home a bit more bearable!!

@Summer70 poor ds and poor you. That really does sound like a nasty initial reaction to the first med. Hopefully you will have much better luck with Medikinet XL. My ds is on Medikinet XL and it has helped him so much. How old is your ds and what will your starting dose be?

Please do keep posting as often as you would like as you try Medikinet and there are so many knowledgeable people here to respond. I personally found the early days of meds a real rollercoaster both for myself and ds!

@Summer70 i should have said quite a few people on here have reported significant reactions to one med and then swapped to another which worked better. So fingers crossed that will be the case for you.

@MissHavershamReturns thanks so much for replying. Just to worsen the dilemma he seems much better today despite me having given this mornings dose - he's eaten lunch & feels way more settled so may well stick with original plan. It's so hard to know what to do for the best! He's almost 12, Y7.

@MissHavershamReturns if we do go to the medikenet it will only be 5mg XL given he's reaction to Xaggatin 18mg

Your ds is the same school year as mine! I think early reactions can settle but doctors do seem to swap them if there is a really strong reaction. We’ve seen such amazing results with medikinet, though I know each medication works for some and not others.

Hopefully you will find the swap for the better and the early days of medikinet will go a bit better, even if there are a few ups and downs. A wise person said to me on the first thread to try not to take any day in the first two weeks too much to heart as things can be much better after the initial settling phase. I definitely found that to be the case eg my ds had lots of headaches in week one but never gets them on the meds now.