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!

So eg we started on 10 over Feb half term and moved up to 15 for a few days over Easter, then up to 20 a few days later iirc

Hi Andrew Garfield - we have had to increase dose a couple of times because it stopped working - makes sense as the children are growing - so weight changes. You may need to increase dose. Also - we initially started giving medicine in morning - now he has to have a top up at lunchtime. However, downside is - we get the aggression at about 4.30 as meds wear off - and so have a hard time at school - but school
think he is well behaved…

Ok……DS is due to take Cat4 tests this month in year 7. I’ve not (knowingly) come across them with my older 2, but they went to a different high school and I didn’t hear about whether or not they did them. Communication there wasn’t the best!
Anyway - has anyone any info about these and specifically them being taken by adhd kids? Are there any questions I should ask the school? I’m assuming the timed tasks won’t be altered for him - and also assuming that they are just another way of interpreting abilities.

DD did them last year - you don't get extra time or anything like that. They're a measure of underlying ability and don't need prepping for.

We went up by 10mg and I started before half term to give a week. If it happened now, id do it over the Christmas hols as like your DS mine has had issues settling in them.

He's up and down, mainly crying over things that aren't big deals rather than being really angry but still not ideal. I'll wait and see how it goes the next few weeks.

things haven't been right with us for ages so I hope it helps once he's settled down. Since about July.

Has anyone tried a weighted blanket for aiding sleep, and if so, could you recommend one? I am unsure what to go for.

@HauntedPencil we got our weighted blanket from kudd.ly.

Can I ask if anyone has a 6 yo on meds and their regime / medication.
My DS is on 10mg of Medikinet XL and we still don't seem to have any consistency in behaviour at school re; focus, attention and impulsion. Our prescriber is reluctant to increase his dose due to age but he's on the 90th centile for height and weight has remained steady with a bit of weight gain.
Do things get progressively more consistent the longer they stay on medication or is it worth trying a new drug / regime/ top up.

This is the pickle that we are in. Impulse control is appalling, but every time we increase, we have a violet and aggressive meltdown. We have a clinic appointment on Tuesday and I think they are going to switch us.

@AndrewGarfieldsLaptop ooooo ill ne interested to see what happens at your appointment! It's a pain. Mine is less aggressive and more emotional - like screaming and crying all at once like he's going to burst with how overwhelmed he feels.

Hope things went ok with your appt Andrew.

Funnily enough we've had the same - more angry last time and this time crying/sad & upset. Hoping we've turned a bug if a corner this week

Hi everyone!!!! Are we all okay? Christ I've had a day of it. Dragging both the kids across the city on the train for this ADHD appointment at 5pm was just too much. Having a beer and some fries now.

DS (6) was peak ADHD today, only at school for 2hrs and spent most of that in the head teachers office. Endlessly talking on the train, not listening at all, asking questions, moving all the time... absolute worse. We have been on 10mg medikinet, slow release, AM.

Psychiatrist was so lovely and patient. We have gone the private route (thanks dad dying and inheritance!) so he really listens and considers all options. DS mentioned that "his brain still feels tight" and I said that I feel as if his body has become accustomed to the 10mg and it's not having much effect.

We have now been placed on another medication 18mg, but it's name escapes me. However this is a whole tablet and DS is already scared about taking them. My plan is to cover it in chocolate spread and launch it in the back of this throat, ha. We have also been given melatonin 🥳, 2mg. DS sleep is bloody awful TBH, sleep walking and struggling to settle. Also been given 5mg of medikinet slow release for the afternoons when we need it (gymnastics, concerts etc).

DS has grown 3cm since July, yay. He's lost weight which worried the doctor. We had norovirus at the end of last month in which DS ended up in hospital for 2 day with dehydration and lost 4lbs. He's told DS that he must eat as DS will leave his packed lunch everyday and school don't care. I'm going to give him two hot meals a day at home over the weekends and more snacks. We have pedisure drinks too!

Whew. Ramble over.

@AndrewGarfieldsLaptop well done for traveling with two kids its bloody hard going...I know.
My DS communication is a constant stream of nonsense and very little questions that he's actually interested in knowing the answer too. He currently has viral croup so he's off meds and trying to homeschool has been a challenge. I never really appreciated how much adhd affected his concentration.
I'm glad you have an understanding Psychiatrist....I feel mine is ignoring the fact that just because DS is 6 he is the size of a standard 7 or even 8 year old and is ALWAYS on the go so needs a higher dose.
Great news about him growing taller but bummer about his weight loss...hopefully those 2 hot meals will make a difference.
Yay! To melatonin!! Hopefully that will help.
Our med review is in 2 weeks where I'll be telling the Doctor he needs a higher dose/ change of medication plus a top up during the day.
We've decided to switch DS to private sector education because I've lost complete faith in our local schools ability to support any child with SEN in Surrey. All we (and many other parents) hear is...no resources, lots of children with SEN
..not enough trained staff...bla bla bla...but in the meantime children continue to not supported and its just sh*t (excuse my french). So trying private sector and if that fails some kind of a home school programme. #exhausted

Hi everyone! Quick update on us. My DD complained that Medikinet made her feel sick so she stopped taking it. But she continued to feel sick so now she said if she’s going to feel sick anyway, she might as well be focused so is back on it. She often feels sick, I think it’s stress related so I don’t know what to do about it. She seems okay now though. I’m glad I stood back and let her make her own decisions about Medikinet. She that age (17) where she can make those decisions and anything I suggest is worthless so it has to come for her. Now I’m just hoping she’s focused enough to finish her personal statement for UCAS which is taking her months!

I'm very pro homeschooling! DS is in mainstream school but I have endless arguments with them about their approach and attitudes to things. We do "home learning" during the holidays and DS responds well to it, I think it's because we get 6hrs of school done in 2.5hrs while baby sister sleeps!

Good luck at your appointment!

Just tried to order Medikanet for my son - but can’t. Is this drug suffering a shortage too?? Intuitiv is but wasn’t aware of shortage of Medkianet…

Sorry to hear that. I’ve order Medikinet XL 20mg and Medikinet 5mg from our local Boots and had no problems.

@Majestic131 - thanks for replying. When did you order them?

On Friday and they had them in stock. I haven’t seen any problems with Medikinet supply but I could be wrong. Maybe try some different places and ask to speak with the Pharmacist.

I had to hunt around town for our Equasym but in the end I found somewhere that have said they can order them. I have to call tomorrow to check if they have managed to get them. They seemed confident but not sure I am.... 😬😬

@Hels20 we’ve had struggles with medikinet XL and immediate release as even though it’s not shown on any of the shortage list people on drugs which are in short supply are being advised to switch to them. Or this is what my pharmacist says anyway.

I’ve had to ring around to get them for a few weeks now, but always got them in the end.

Quick update from us, which is that ds has made it through his first term of High School so far, but with a fair number of ups and some pretty big downs.

He has struggled to get used to the homework and different lessons, but dp and I are really proud that he’s still attending every day and even finding some of it ok and that he’s still got one friend left from primary days and they seem to still be good friends. We feel there is lots for ds to be proud to have achieved, working out how to manage his ADHD and Autism.

I want to be honest and say I’ve not always been doing so well with this change and stress over the last few months. I have reached out to one or two fellow SEN mum friends locally and got a lot of understanding from them, though I’m always conscious not to burden people working with their own difficulties.

I am hoping for a time to breathe over Xmas and for a better 2024. If anyone has done this move to secondary and has reassurance that it can get better then I would love to hear that, but would also love to hear from anyone having experience of similar/other school transition tough times.

@MissHavershamReturns Thats great your DS is going to school. And yes, I can’t wait until the holidays either. Our transition to HS was horrific and I’m still traumatized. BUT my DD was at that time undiagnosed. She was diagnosed with ASD at 15 and ADHD at 16. I knew she had difficulties but I didn’t associate it with any ND and that made it really hard for her. Since you DS is diagnosed and has supportive parents (and hopefully supportive school?) hopefully things will get easier for him. I think the first term of HS (my younger NT DD is the same age) is going to be difficult and tiring. We will all deserve a break by Christmas holidays!
Also, we have not had any issues with Medikinet XL supplies yet but CAMHS did say there may be a knock on issue when other meds are difficult to get and people might start using Medikinet as an alternative.

@Hapagirl48 thanks so so so much for those kind words. I am so sorry to hear about what you went through with your oldest. I hope things are a bit better now

Snap; we have had no issues here. When Boots struggle, I nip to Asda. Asda are the cheaper option however!

Hope we are all ok. DS has a really bad cold, which has led to a bad day at school. He woke up on Monday feeling rotten but he's had so much time off; his attendance is 80% and school have had a "strong word" with me. I dosed him up and what do you know, a bad day occurred.

I'm keeping him off today, and then Wednesday as it's school pantomime day and he hates it.

It's rare I get him in for an entire week this year.

Secondary is definitely not easy is it?
even for us the amount of homework is overwhelming and DS went through 11+ last year so he was used to the pressure

But having 50 new French words every few days , plus God knows what for science and history is just on a different level with an ADHD kid

i have to sit down and learn every freaking thing with him so getting super irritated especially as I don’t give meds in the weekend … I am thinking wine on Saturday night, not effing Latin!!

Anyway really proud of you , not easy at all and please come vent here (or PM us) if you need anything ! just needs patience and your ds will do great you ll see!