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

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of 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. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

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.

This is thread 2 and 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 it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

@MissHavershamReturns it was very strange as I just dropped him off for the assessment and got no feedback afterwards as we need to wait for that. They have a multi disciplinary meeting about him first. Realistically, it won't change anything, as even if he doesn't quite hit the diagnostic requirements, he still needs some accomodations in life/school that others don't need. Diagnosis or not. I suspect he's very borderline and his ADHD meds have really reduced his ASD 'traits'.

@nightwebs welcome to the best most supportive thread on mumsnet!! I would definitely second what has been said by @MissHavershamReturns about the top up. We don't always top up, but when we don't, we really notice when the meds wear off. He's manic, silly and hard work. When he has his top up, this doesn't happen. It does wear off at 6ish and we can tell because he becomes awful at following instructions and processing information again - for my DS his executive functioning weaknesses are his biggest barrier. But we don't get any of the silly madness. My DS only has a short acting 5mg top up. And it definitely doesn't affect his sleep. He has his between 2/3pm.

@AndrewGarfieldsLaptop if you aren't already aware, the NHS do now offer Right To Choose for kids autism assessments. We were seen within 7 months after going down this route. It's absolutely worth knowing about if you are interested in getting your DS assessed.

However, I have also learnt that a lot of my sons difficulties stemmed from ADHD. He couldn't cope with change before meds, but now he can. Same for resilience and trying new things. The Dr said that this could be just down to processing and now he is medicated his brain has space to breathe. It's not necessarily autism. The two can present very similarly. I'm really unsure what our assessment will show. We have three weeks to go till we find out.

Thanks, we have our follow up soon with the consultant and I will mention the top up to her. DS is out with a friend atm and has just called me to ask for cash on his Go Henry for snacks. Guess that's the meds wearing off now!

@WesternEasterner this is something I struggle with, the differences between ADHD and autism. The consultant said at DS assessment that he appears to have a couple of traits of autism but he doesn't meet the diagnostic threshold. There seems to be a lot of crossover in characteristics!

Oh I didn't know this! DS has been really unreceptive to trying to learn to ride a bike (to the point of meltdown) I might look into. A local company does 1 on 1 which I might book but it's expensive- and I'm not sure how much he'd actually cycle.

Hello to all and welcome to new faces. All ok here at the moment. DS is really struggling to sleep and I might ask at his review about this as gut feeling is his meds might be sufficient and it's the lack of sleep that's causing him to have more meltdowns. Not sure if anyone's experienced tbjs?

Good luck to all on a half term med break! Not off yet here. We have another consultant appt next week.

Now that the weather is colder, eve been having hot chocolate which can be made so caloric with marsh mallows and flakes etc!

Hello! We had a bit of anger going to 30mg in the evenings - ours did wear off but like Miss H says others have had a better "come down" with top ups.

Sorry to hear about him getting attacked, poor boy.

Well I have had no problems getting DS's Equasym here, so that's brilliant! If anyone is struggling to get the 20mg, they should be coming back into stock v soon according to our pharmacy!

We now have enough till the end of November 🙌🙌.

I'm not sure if anyone can help with this. DS was referred by the GP to CAMHS for his NHS assessment and we have a video call on Saturday with a nurse specialist from CAMHS to see what they can do for him.
DS has admitted to feeling anxious in school, more so since the assault and he said that there are noises in school which heighten his anxiety. Would CAMHS help with this, say a referral to OT? Could they help with this? I'm not sure if its a sensory issue or not tbh or just a generalised anxiety. I'm not convinced it's meds related - he says he had some low level anxiety through his first year at high school (so before he started on them), it then felt worse after the attack and he says he doesn't feel that the meds have any effect on it when he is on them.

Had a right outing today getting meds - usually takes a week to get my repeat and they only told me after a week they couldn't order it. She's said to try the bigger chains as they didn't keep any in stock and ordered as needed so that might help.

We have our appt tomorrow, going to have a chat as our syntomns are ticking up again, worryingly the issues at school and sleeping isn't good.

Hi, sorry, long time replying, I hope everyone is ok. I've seen the meds shortage, today I went to Boots and they said no, no Equisam (sorry for spelling, it's late) 10 mg XL, tried ASDA pharmacy, no luck but then tried an online pharmacy Pharmacy2U , I linked it up to the GP surgery, NHS site etc, spoke to them and the surgery, plenty of meds in stock! So getting it delivered on Friday. I hope this helps anyone struggling to find the meds 👍 (they have an app and the GP has already approved it)

@KTC40 and @HauntedPencil I’m glad to hear you got the medication ordered. It’s just so stressful isn’t it and all of us ADHD parents could all do without it. Glad you got yours ok @WesternEasterner. Really nice to hear you’ve not been affected.

Medikinet XL is not supposed to be subject to shortages but we are finding we have to ring round to get it and always have to wait a week for the immediate release top up to be ordered in.

@nightwebs I think it’s really difficult to know where to start with these things with our ND young people as there are so many complex things in the mix. I can see it’s really complex with your dc as you have trauma in the mix, which I’m so sorry to hear about. I really hope CAHMS can help.

We know dc locally here with ADHD who are on a low dose AD which seems to be helping them. I’ve considered this for my ds who is highly anxious and will ask about it if needed.

For my ds a lot of his anxiety comes from his autism and we are looking into adapted CBT. Reducing pressure for him also seems to reduce his stress and anxiety so we do find that helps a bit. We hope to start OT at some point too.

My 7 year old boy soon to be 8 has been on Medikinet 10mg for a week, told to increase now to 20mg 😬. Sleep and appetite are okay but quite dysregulated in school perhaps even more than before. He’s quite tall and well built for his age so thinking we may go up further? Also awaiting assessment for ASD, definitely has sensory processing difficulties and has seen a paediatric OT. He’s also adopted so always thinking that his dysregulation can be linked to his early life experiences. Just wanted to say how helpful all of your comments have been in helping to navigate this path we’re on and hoping our correct dose/medication type is not too far away. It seems that most are sitting around the 30mg mark?

Hi @Majestic131 , yes I think a lot of ours do seem to be at around 30mg!

We gave DS a whole week off meds during half term, and it was ok, lots of spinning and bouncing around but otherwise fine. To be fair we didn't really demand much of him either. I've also turned into a bit of a feeder, plying him with hot chocolate and flapjack at every opportunity...

Tomorrow he starts on a 5mg top up at lunch time in the hope that will stop the crash he's getting at school (and reduce the emotional carnage in the playground!). The original thought had been to try Equasym instead of Medikinet, but with the supply issues that wasn't possible. So a lunch time top up it is.

For us and it’s very early days but it’s like at school DS and his ADHD symptoms are worse on 10mg Medikinet XL than without. Does this seem a common experience? Hoping that as we move up it will help him a bit more at school. We may also need to progress to a top up at some point.

We are about to try to move up from 30 to 40mg (Equasym) and up to 10mg per evening Melatonin. His current is not really working for him any longer, a lot of behaviours creeping in and a couple of meltdowns. Fingers crossed.

@Majestic131 welcome to the thread and I’m so glad you’ve found this thread useful. It’s been an absolute lifeline for me as I don’t feel anywhere near as lonely with meds anxiety as I would without all the support and experience here. We are definitely on 30! Mine was still very impulsive at 10/20 and no difference seen by school at all until we got to 30. We have friends who are adopters and it’s lovely to hear you are always looking out for impacts for him as an adopted dc. Keep us posted on the coming weeks and I hope the increase goes well

@rhubarb84 really hope top up goes well as it’s been brilliant for us. Please let us all know if it works for you. Good work on the med break! Sounds like it went well and I think you may be me as ds is getting fed so much yoghurt, hot choc etc that my dp is stunned by the amounts we get through in the shop

@HauntedPencil fingers very much crossed for your increase and I hope you start to see an improvement on 40.

Quick update from us which is that we started half term with good intentions to do a 5 day med break, but while 3 days were fine on day 4 ds was awfully emotional and distressed, which is a usual side effect of med breaks for us. We find days 1-3 are fine, just lots of ADHD behaviours. On more or less day 4/5/6 he becomes incredibly weepy, emotional and often very reactive as well. Then by day 7 say he’s a bit less happy than usual with more and more ADHD behaviours. If we do a second week of meds break he’s fine emotionally just lots of impulsivity, hyperactivity and can’t concentrate on anything.

We are trying to prioritise keeping him on an even keel emotionally as school has been an awful struggle for him since Year 5 and he only just started secondary, so we can’t have him going back in a state as if he started to melt down I would be worried about him managing to complete the term in all his subjects. So on the morning of day 4 (yesterday) we put him back on meds.

I feel really worried about his height and about medication tolerance, but less so about his weight as that’s rocketing back up with my new meal at bedtime policy.

Really really don’t know if I’m doing the right thing with not doing many medication breaks. We will do a one week med break at Xmas and I’m actually wondering about asking the consultant what he thinks of tapering down for med breaks, which is something I’ve read about on US websites. Some drs there reduce the medication down over a number of days rather than cutting it completely. I’m not sure this is done in the UK, but if ds wasn’t so distressed for 3/4 days each time I wonder if we could have more breaks without destabilising him at school.

Has anyone been advised to taper down for med breaks at all?

@MissHavershamReturns I haven't asked the consultant we see about tapering meds down for a break but it sounds sensible. We are going to ask about going down to 10mg over holidays and weekends instead of breaks. Enough to take the edge off for him and to reduce impulsivity but enough to encourage him to eat.

We see her mid November so I'll let you know!

We've not been asked to do them or recommended to, is it for the weight gain only? I'm sorry that sounds so difficult.

Update from us..

Psychiatrist has signed us off for shared care... hooray!

He's keen on lowest possible dose for good effect so we are sticking on 20mg Equasym XL. She also has 10mg instant Tranquilyn and he suggested cutting those in half to help taper the rebound in the evenings if she has bad days.

Sadly (for me) he wants to keep the weekend breaks and school holidays... DD was being distinctly unhelpful when I was explaining my reasons for wanting her to not take a break. She gets really bad headaches - but now tells us all that she's "had those for years" (first I've heard of it... grrrr)

School results seem to be heading in the right direction - so big plus there, and she's finally dumped very toxic friend (who I've been unhappy about for years but didn't dare criticise) and as a result is a LOT less anxious than she was.

About to attempt to track down next supply of meds so praying local Boots can get them in for us - and the GP plays ball on the shared care.

Congratulations @ANonnyMice that's great news, I'll keep my fingers crossed for you on the GP agreeing to shared care.

We have our follow up with psychiatrist on Monday so will potentially be having the same battle soon 😬

Hello everyone. Are we okay? DS has been in hospital; first we had covid, back to school for 2 days and then he got winter vomiting bug. Combine these with his meds, we have had some weight loss and his trousers are too big.

We have started on some pedisure drinks with gold top milk, and I'm making a curry tomorrow with ghee and double cream. Let's hope we can put those pounds on.

@ANonnyMice you are on exactly the same meds as we are 😊 we don't technically do breaks but we may have to start due to weight.

We had no problems getting medication recently. I think the bigger pharmacies are definitely better.

@AndrewGarfieldsLaptop sorry to hear about your son, that's a rough few weeks for you all! I was eyeing the pedisure the other day. We do a daily nurishment drink at the end of the day. He really likes that and is always happy to have it.

The pedisure with some gold top milk has been a hit, and tastes really good. My son has asked for some to take to school. It's a bit pricey (£10 a tub or 8 cartons for £16) so I'm hoping this is a stop gap thing.