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!

Was also told that DS is quite underweight and can not afford to lose any more weight so we have to closely watch it. What happens if despite of all our effort he still loses more weight?

21 days on 2mg on Intuniv and sadly have not seen much improvement. Our consultant wants us to stay the course and keep giving it a try which is fine since we aren't seeing much in the way of side effects. But it sucks that we still aren't seeing progress.

@krobhix20 i’m sorry things are not as you’ve hoped for.
If you don’t mind my asking, what’s the reason you are on intuniv?

we tried medikinet and it made my sons symptoms worse. he was even more excitable and irritable

ah ok i see. we are about to start it tomorrow and feel quite apprehensive about it. Really hope it works but read it’s 10-35% change of it not being effective.
whats the next step for you?

@Whereisthesunny I'm not really sure. They want to see if it eventually starts to see some progress, so at least a few more weeks. Again we thankfully don't have any side effects. One next step might be an SSRI to help his anxiety and see if that does the trick. But who knows. I am trying to remain hopeful as I've heard so many positive stories, particularly about Intuniv.

I really hope it starts working for you very soon. At least no nasty side effects to endure in the meantime. How old is your son?

Hope everyone is doing well. Just a note from me, I've noticed more and more that DS is withdrawn and very quiet on 40mg especially during the morning, I've mentioned this to his consultant and decided to go back to 30 for a bit and see if that works better. Anyone else finding this?

@HauntedPencil our ds was a bit withdrawn and quiet on 40 but we had to stick with it because it was the only dose where he was able to manage at school. At that point I think he was a bit over medicated, but as he’s got older it’s become less evident - I think as he’s bigger and heavier and this is probably about the right dose for him now.

@Whereisthesunny how did starting the meds go?

@krobhix20 I hope you’ve now seen a little improvement?

We have been lucky that the meds which in our case are Medikinet have been great for our ds’s anxiety. He was really in mental health crisis when he started and the medication has made a huge difference.

@AndrewGarfieldsLaptop just saw your message about your school place struggles. I’m just so so sorry to hear you are faced with this. I’m sure you’ve already done this, but if you look up on Facebook ‘EHCP in Surrey’ but substitute in the name of your county there is usually a lot of local advice about schools in and out of county.

There can be ones listed there that you might not have thought of because of distance or because they are very small/private special schools. I know a friend’s dc did an hour in a taxi every morning and afternoon but because the school he went to (a private special school) is so experienced and met his needs he has progressed brilliantly there. The local authority paid his fees. He just watched a movie or listened to music on the journey.

It would be worth calling SOSSEN helpline for advice as if you need to go to tribunal for a school and win then the tribunal can pretty much make them give you a place.

@MissHavershamReturns not sure if it’s good or bad starting meds during half term. Ds was at a football trial for most of yesterday with his dad. Not sure if the worry of side effects played on his mind but said he got a strange feeling of throbbing in his leg and didn’t want to eat much but it’s not unusual for him to not eat a huge amount during the day and pig out in the evening which he did so fingers crossed, he won’t lose any more weight. He said he felt he was more composed and focus but again not sure if it’s just in his head but either way hopefully it’s a good start for him. He is to take 10mg for this week then move to 20mg from next week when school starts. 🤞

Quick update from me. Looking back from the final half term break of the school year, Year 7 at the High School has gone far far better than I feared it would. But of course there have been a lot of rocky times, which is our normal.

At the start of this school year dp and I realised we had to accept he might not make it through the year in this school, but he has! I’m absolutely certain he wouldn’t have been able to cope in secondary without the meds and would instead be out of school at this point. So there is always hope, as in Year 5 ds was in total crisis and things were looking dire.

We knew secondary transition was going to be very hard for ds so I put a lot of my life on hold to try to see if we could get secondary work for him. I have had to manage his homework load and sit with him as he did each piece. I’ve learned a lot about geography and even learned a bit of Spanish this year! I’ve been lucky to be able to leave where I work early to ensure I’m home before he gets in and spent literally hours listening to worries that have come up. I have only gone out of the house on a school night once or twice this year, as he gets anxious if I’m not there.

It’s May and almost June and ds is still in secondary and mentally managing day to day, which is such progress from where we were in Year 5.

I know there were a few of us starting year 7. It would be great to hear how everyone’s secondary start has been. It would also be lovely to hear how everyone else is doing.

@Whereisthesunny I have to do all our medication changes in the holidays as my ds can’t cope with doing them in school time, so I would say it’s great to be able to start in Half Term where you can keep an eye on him and give him a chance to get used to medication without the added pressure of school. Not always possible, but nice when it is.

Our consultant said the first two weeks can bring a lot of little side effects which are the body adjusting to the meds and which then go. Eg my ds had a lot of headaches in the first week which then stopped. Hopefully the leg pain has stopped now, but obviously if it hasn’t I’m sure you would let your prescribing doctor know.

He could well be feeling increased concentration as my ds could feel this straight away too, even on 10 mg and the medication at 20 was definitely even better for concentration in his view.

Keep us posted on how it goes over the next few days if you would like to and all the best with the early days on the meds.

thank you @MissHavershamReturns that’s really helpful i look forward to seeing if home issues such as irritating siblings/melting down will improve. Hope you all have a lovely weekend

Bless you … remember my Latin comment a few months back? Now it’s expanded to Science, Geography etc .. I am very happy to report I now know which tectonic plates cause which volcanoes 😂🙄🤓🤓

well done for making it! Y7 is a massive step up and it can only get better

we re similar plus the fact that Medikinet stopped working mid year and had an awful 2nd term

Introduced Guarfacine and DS is sailing through remaining Y7 , honestly I can’t recommend it enough

one thing I will say also, if you can you might want to check out thyroid, Did quite a bit of research and it’s quite common (shows up as adhd as it’s seriously impacting dopamine)

we did thyroid check for DS and it’s slightly elevated (definitley not acceptable) so treating naturally and retesting

just a thought !

Yes kind of but it might be ok for school

whats their feedback on 40mg?

Lovely to hear that depsite difficulties they are both getting through yr 7 a lot better now. We are there next term and I'm very nervous, although slightly less so as we've had a vast improvement since Christmas after 2 hellish terms. I have no idea why things have improved I honestly don't think the meds related!

It's kind of hard to say as he had a really bad phase and he was angry withdrawn and upset quite a lot at this stage be it the 30 or 40, his consultant upped him as he was being really symptomatic for eg Saturday I took him to town and he didn't speak for a couple of hours. He looks really miserable but when I ask he says he feels fine, when he was on 30 he was calmer but not withdrawn - tricky isn't it. Going to run with it for half term and ask school for feedback the week after.

I've even asked if he wants to stop having meds he's looked so sad but he says he wants to keep taking

Day2 of Medikinet XL 10mg and ds for the last hour has been incredibly angry and aggressive. Does this fit in with early side effects or is this something that’s quite common?

@Whereisthesunny we had a lot of anger in the first two week but for us it was a medicine crash - the medication leaving the system and the side effects of that, and it was completely solved by a lunch time top up. But for us this was happening about 2-3 pm.

Other people on here have experienced very extreme anger where the doctor has decided the meds need to be switched.

I would tell the doctor who is prescribing you the medication and ask what they advise.

@HauntedPencil it’s so hard to know what to do with balancing different considerations isn’t it? I’m so glad to hear he’s been better since Christmas and hope that will continue. Year 7 start is hard, but they can sometimes surprise us by managing the change, as I’ve seen this year.

@LoveMyADHD I’m really pleased to hear guanfacine is working so well for you. Also pleased to hear that Year 7 is plain sailing. We did it didn’t we?!!! Or they did it!

That’s very interesting about thyroid - was that from a blood test? We have major family history of it but I had read somewhere it was more common in girls.