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!

It’s the quick release we were put back on in March and this is when things started to get bad.
since diagnosis he’s only had 3 appointments in a year and I had to push for one of them, and the one on Thursday I had to email their clinical email inbox through my nhs work email just to be heard. They wanted me to wait until September initially.

im going to ask to be referred for some type of OT and I’ve just bought some vitamins off Amazon. It’s rough, if the slow release ones helped with the aggression/swearing etc I’d take the sleepless nights but he needs sleep and they just make me feel incompetent when they smile and keep handing me sleep diaries 🙄

he sat in front of me and wet himself again tonight so he’s in a bath currently. I’m going to ring the GP tomorrow just to check there’s no underlying uti but half the time he does it for fun? Maybe sensory sometimes? But he’s not wet himself since he was toilet trained over 5 years ago.

he’s adamant this evening he’s ‘going out to play’ tomorrow afternoon but there’s no way. I don’t trust him at all anymore out of my sight 😞

Hi!

Has ds medication review yesterday and we have to stop the medikinet and go back to equasym (was on 20mg before but i think 10mg this time) and add in guanfacine.

i would love to hear from anyone who has done a combination of these two and your thoughts and experiences?

just patiently waiting for the prescriber to write to the GP so we can get a script organised and get it started asap :)

@MamaClause I’m so sorry to hear what you’ve been going through and totally agree with @LoveMyADHD that it’s worth exploring melatonin for the sleep and asking to be seen urgently to try other meds. It’s so stressful as a parent going through experiences like this so I just wanted to send lots of sympathy

Thank you so much. Unfortunately they have refused me melatonin three times now, only because on a Friday night when he stays with his dad he isn’t too much hassle (baring in mind he’s had 6 hours in school for the last 5 days, time at the park, screen time and dinner as well as sitting in a hot car for an hour to get to said dads house so yeah, he’ll sleep better there that one night) so they basically give me sleep diaries and tell me that I should try dads routine 😳

I wonder why they are being so reluctant to give melatonin out to you, DS consultant was very quick to do so having suggested it!

The quick release ones didn't work well with us, we've been much better on the equasyum this time of year really dosent help does it? I dread it. There are always some issues and DS finds it hard to stay level for the last weeks of the summer term. Limping to the summer holdiays usually.

Has anyone had experience of medication helping with extreme tactile sensitivity. DD7

Whoops posted too soon! DD7 has extreme tactile sensitivity and can no longer tolerate any clothing. She has OT assessment soon, and also ADHD /ASD later in the year, but desperate for some positive stories!

Does anyone have any tips on getting through the blood tests with an extremely nervous, ASD ADHDer with a low pain threshold 😭

We've had to have a few catch up vaccinations done recently and that was bad enough, but the psych needs a full blood work up before prescribing and I'm dreading taking him because I don't know how to help him :(

I know this isn’t helpful or what you asked, but is it completely necessary? My DS never had to have bloods done.

@Freshstarts22 We're not in the uk so it's required here unfortunately. Also EKG and EEG plus normal obs.
TBH he's so slight for his age, and a poor eater so I agree that checking everything is ok first would be a good idea. Just wish they could use some sort of magic scanner instead!

My ds (8) got his new meds last night. we have guanfacine 1mg E/R and equasym 20mg E/R. i have heard that the guanfacine is usually taken in the evening due to the drowsiness effect so he had one at 6pm last night, went to bed like normal at usual (far too late) time.

he had his equasym this morning and the school called (he goes to a SEN school) to say he went to the sensory den and slept from 11.00-1.30pm lol. the last time he was on the equasym, they kept him awake until literally 3-4am, so hoping to find the best time to take the meds so that by bedtime he is shattered.

i cant find many posts on here with people on the combined stim and non stimulants so any advice would be great!

i think i will stick to these timings for a week and if his sleeping hasnt levelled out by then, i will give them both together in the mornings to see how that goes.

Sorry to be so absent. It’s been a tough few weeks here and I haven’t had a chance to catch up or breathe!

Will try to read and catch up

Sorry to hear that - we have had a really hard few weeks here too big uptick in incidents and symptoms - no real idea why

Does anyone find that there will be months that are ok (ish) then a real bad run? That's what we have. I definitely think it's the time of year/summer and the end of the school year.

Are you ok??

For us when this happens it always that that he needs a mess break for few days/weeks as he’s getting too used to them!

they definitely need a break from school and alllll those expectations !!

@LoveMyADHD bless you for asking that. I haven’t always been the last few weeks but feel like the last few days things are getting better again.

If I’m honest I’m very very scared about ds starting High School so if anyone has any wisdom or experience I would be grateful for it. Even if that’s yes it’s going to be a rocky few months!

@MissHavershamReturns which part exactly scares you?

@HauntedPencil we get exactly this too. All the High School moving up stuff and exhaustion plus end of term trip etc seem to have sent ours into a spiral down. We talk about this quite openly as he’s Year 6 and says it’s a passing phase and things will become easier again, which seems to help a bit.

@LoveMyADHD how long do you have

Meltdowns, losing stuff, getting lost, friendships, him panicking about the harder work, homework, new children who won’t make allowances. New staff! Etc etc

It might be quicker to say what I’m not afraid of!!

@MamaClause bless him with the sleeping. I’m glad it sounds like school are super supportive (if that’s right). I’m afraid I have no personal experience of the meds mix you are on, but hopefully someone will. What about the med book that’s listed in my op - maybe that might have some useful content if you haven’t looked at it yet?

Does the school have good SEN? Have you spoken to them? They can certainly help with friendships and harder work and stuff like that ..

does the pill help him with similar situations now? Does he panic in a new situation etx when he’s medicated ?

@ColonelSpondleClagnut have you had your appointment yet? My ds had a blood test for an unrelated condition and it was actually doable and while he did cry a little wasn’t anywhere near as bad as we thought. I let him watch my phone as needle went it and used my hand to help him look away - I asked if he wanted to look away and he did. We talked about how the prick was quite small and there would be a brief sting going in and I showed him where it would go in the crook of the elbow. We also had a teddy to give as a well done. He was about 8 I think

@

@missbootsmy ds has sensory processing issues which have been identified by an OT, and those are still there even with meds, so I’m sorry not to be able to give you hope of an enormous change based on our experience. BUT what I would say is that overall ds has been getting better with meds at emotional regulation and coping with what he finds tricky. So I think possibly he has become a tiny bit more tolerant eg of scratchy clothes compared to before meds

Is your child having OT at the moment on the sensory side?