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!

@noideaoffuturenow nice to talk to you again on here. I’m so sorry to hear about the A level challenges and I completely understand how other dc can present less obviously. I have another dc who has been dx more recently and who presents far less obviously than the dc who I started this thread for. Are you considering going private for dx?

@MintAeroBubbles really glad to hear today went well!

Thx MissHaversham..yes we will have to go privately this time so that if there is an issue it can be dealt with before she completes her final year at school. NHS wait would be 3-4 years. We've discussed using techniques for ppl with ADHD & she's already worked out her own routines. (She told me she watches a video to ensure she finishes brushing her teeth & suggested I do the same with DS eg 😂). But-techniques are only one thing;I really wasn't expecting the difference medication has made to DS and I'd like her to have that opportunity if she needs it. Even private routes here have WL now..and I'm really unsure of how to ensure the doc is well qualified/has the relevant experience. I've seen some pretty dodgy looking 'clinics'.

@noideaoffuturenow if you go private make sure you Gp does shared care otherwise you’ll have to pay privately for the meds and that’ll add up. I feel your pain. I have an 18 year old with ADHD and while she did well on her exams, she had to work so much harder than everyone else. She also had to say no to a lot of people who tried to buy her meds of her for exam revision purposes.

this last sentence wow!!

i ve been so tempted every time I had to prep for a work presentation 😂

what meds is DC on now?

I know! I was so proud of her for saying no, there was a time where she would have just given them out just to be liked but she's understanding now that they wouldn't like her for it, they want to use her for them so that's maturity. She's on Medikenet XL.

@Hapagirl48 massive well done to her, my DS would definitely give them away … for free !!! Interesting how Medikinet still works for her at that age, I would think they’d move to concerta by then

@MintAeroBubbles we tried concerta once last week as we need him to move to this from September and it was a proper magic bullet!! Calm, collected, focused, perfect homework, not challenging anything, no panic or OCD
Don’t think he’s been like this on Medikinet for years!!! Problem is that it stays in him for very long time ..

@LoveMyADHD Should she be in Concerta? Now I’m worried! They tried her on Xiggatin and it didn’t suit her so they put her on Medikinet about a year ago when she was 17. She’s 18 and moved onto adult services now but impossible to see a psychiatrist for a possible medication change!!!

Oh no don’t worry… it’s up to the individual, if it works for her it’s totally ok!

I ve only asked as most kids tend to move to move to concerta during secondary , mainly cause it stays longer in them

if she’s ok with Medikinet why change I guess ..

Sorry new to this thread so apologies if this has been discussed recently. Is anyone getting hold of any strength Concerta (specifically) at the moment, as in the last few weeks? Planning to start the ringing round next week once I can request a prescription but local pharmacy has none at all. I know it’s got a load worse recently. Thanks

We got it from central London x

Anyone on short acting Medikinet 15mg? I have just asked the 10mg to be increased and just been told that it’s 2 separate tablet which would be mean taking between 4-6 tablets a day.
My nearly 13 year old is already not keen on taking them but this is going to make him hate it even more.
We can’t have the long release due to bad rebound so not sure what the next option would be.
Is 20mg short acting a huge jump from 10?

@Whereisthesunny 20 from 10 is huge!

we re perfect on 20 , rubbish on 10 (worse than his normal adhd self)

if he’s 13 potentially not worth just giving 15mg?

I’ve never heard anything on 15 being one tablet, two separates 99% sure

sorry @LoveMyADHD i must have muddled up what I was trying to say.
I have just got a prescription for 15mg medikinet as my son and I feel that while 10mg seem to help it’s not going to be enough to settle him once he is back at school.
when i spoke to the pharmacy they seem to mention they had 2 items so when i questioned why 2, they said that 15 mg comes as 2 tablets (one 10 and one 5)
my issue is i’m already struggling with him taking the one tablet 2-3 times a day and now i’m going to have to get him to take two tablets 2-3 times a day. Not to mention that pharmacy wants to charge me 2 prescription charge as it comes as 2 items.
I have emailed the private dr and suggested (which she might think i’m slightly crazy) that perhaps we could have a 30mg (if they do that strength) and i could break in half and just take half every time?!

Yes I got you I probably didn’t articulate my response properly

I’ve never heard of 15 mg in one tablet , I do believe your pharmacist is correct

perhaps consider asking for 20mg? At this age it should be ok?

Yes that was going to be my other question but as you say 20mg can be a big jump and he’s only just recovered the awful feeling the XL gave him so don’t want to overwhelm if i can help him as he is already being difficult when i ask him to take his meds during summer so i need to stay on the right side of him…

So...DD (18) diagnosed with ADHD & we're waiting on delivery of Lizdexamfetamine. (Elvanse/Vyvanse/Tyvense). Prescribed generically to ensure even if one brand out of stock, we could get the other. We have no experience with this drug in our house. Not sure about stock either. We have no issues getting DS Medikenet XL. Also-have been told se can stop atWE if she wishes with no impact-I know DS had SE and experienced this for weeks at a time titrating up doses. So a bit wary of the start/stop method. Anyone have any advice/experiences? Worried that different brands may have different effects/SE. TY!

Hi @noideaoffuturenow
out of interest how come you’re changing? Medikinet didn’t work any more ?
also what’s SE? X

Sorry-wasn't clear. DD has never been on medication. She's just been diagnosed. DS was diagnosed earlier this year & he's on Medikinet XL.

ah got you , and what’s the reason she not prescribed Medikinet , why did she go straight for the other one ?

I think it's because of her age...she's almost 19. He did discuss shortages, though so that was possibly part of it. He also thought the starting dose may be enough & she may need no further titration as she's fairly petite. Which would be great!

My dd age 9 is taking elvanse its amazing it really is. But she's not eating and has lost 5kg

Ok it’s interesting how some prescribe Medikinet while others are skipping it

I do wonder if Medikinet is cheapest for nhs when first line of response . Absolutely doesnt work for us anymore not sure if hormonal or not

@Treeinthesky is the lack of appetite lasting all the way till bedtime ? We have very similar with concerta

Oh no -the weight loss is hard to deal with!! My DS has lost 2kg over the summer on Medikinet and really trying to regain it now. Worried they'll stop it at r/v as he's only on 9th centile as it is.....he got MORE active; restarted football as less gaming (due I think to less dopamine seeking behaviour). So despite us trying hard with food, he still lost weight.

They are monitoring it but have continued the meds for 48 days. So the GP has refused shared care as its for a child and is private however it is via adhd 360 and my ccg use adhd 360 and I have been referred to them as an nhs patient but the GP has agreed shared care. So that baffles me. Anyways I have rang children's nhs service as my daughter was referred to them however the waiting list is 5 years and we have been waiting 3. They have asked for the assessment and medications dosage and will take it on and do shared care with the gp.