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!

Seems like you need a medication review

we found the hard way when we kept in insisting on Medikinet and kept on upping the dose (it used to work amazingly and then it just stopped, causing awful side effects )

you could try another brand like Equasym where the medication is same but the mechanism is different . Or you could change medication all together to something like Elvanse , it stays for number of hours so you might want to ask for short release. We just started and it’s working ok so far

or you can trial Strattera, Intuniv or Clonidine, non stimulants taken every day. It’s all trial and error you might need to experiment
X

@Veebs21 I’m so sorry to hear about the difficulties on the medication. Was the anger only in the afternoon or at all times?

@MissHavershamReturns I think across the board. School said they didn’t really notice any benefits to her focus but that she became quite defiant, and very grumpy (stamping her feet and point blank refusing to do things), which just isn’t like her. She lost all her resilience/perseverance with things she finds a little trickier and just seemed on a short fuse. We noticed too when we picked her up from school that she was so snappy with us and her sister.

@Veebs21 so sorry that you experienced this with the medication and I can see why you feel it doesn’t sound as though this one is suitable for your dd.

The medication book I’ve linked in my op might be worth a read - it really is well set out. He explains in that book that for many dc the methylphenidate based meds work brilliantly and better than others. However, many children need the other types of stimulants and many don’t respond to any type of stimulant and need the non stimulant meds.

As far as I understand it (not an Hcp though) whether Medikinet XL works is no reflection on whether the other non methylphenidate stimulants will work or whether the non stimulants will work, so there is every reason to be hopeful about the medication review and maybe the next med type tried will work better for her.

@Veebs21 I had a dc in a very similar position and it was not clear whether he could stay in ms. For him the meds have made that difference and I really hope they do for you too.

I’m new on here and don’t know what to do so I’m hoping for some advice please. My daughter was recently diagnosed with ADHD at the age of 13. We went via a right to choose pathway and we’ve had the diagnosis made by an MH nurse following assessment and that’s it. No mention of the possibility of starting medication in the report. My daughter is keen to try medication. She has trouble concentrating at school, feels like her brain never switches off and sleep is affected. How would I go about getting medication. I just don’t know where to start.

Are you in scotland? Ive heard before of mh nurses dx there.

I dont know the process for scotland bumping in case someone else does.

@Jedstre do you have an ADHD assessment report?

if so you can go to any private psychiatrist to kick things off with meds

That seems very strange. Everything we have been told is that only a consultant psychiatrist can diagnose ADHD and prescribe medication.

Why are nurses doing this with some providers? Seems like a bit of a scam to me?

Thanks for the replies @Mrburnshound @LoveMyADHD and @OhCrumbsWhereNow
No we are in England. We went through Psicon. I think a lot of ‘Right to choose’ providers have an MDT approach so no guarantee of a psychiatrist.
The report was written by the nurse who did the assessment. I did query it at the time and I was told they follow DSM-5/NICE guidelines etc but as I’m reflecting on this I highly doubt a psychiatrist would prescribe based on the report.
Perhaps the next thing is finding a private psychiatrist, which I did look at but the one in our region recommended is at capacity. How much will a private consultation cost approximately and then presumably its private prescriptions? We went down the right to choose route so we didn’t have to pay for a diagnosis. I’m pretty well versed in all things NHS. I’ve worked in it all my life in HCP and corporate roles and accessed various services across my lifetime but this is a whole different ball game.

We went privately - I think it was about £650 for the assessment, then it’s £250 every 6 months and private prescriptions worked out about £60 a month till we moved to shared care after 18 months.

DD wasn’t complicated though - no ASD in the mix, very strong family history and years of reports etc that strongly indicated ADHD. We went privately as 3 year waiting list here.

If you’d like a contact for private psychiatrist I can DM you

he does have waiting list as too busy but he’s fantastically helpful, he’s increasing or reviewing dosage via email with minimal cost and generally fantastic to work with

if you need to try something else quicker you could go to a neurologist and get off label non-stimulants like Clonidine (again I can DM you name if you need it but you can get the drugs same day). Is your kid more on the hyper side or the non focused one

x

Thank you for more replies, really appreciate it. I’ll DM you lovemyADHD.
DD struggles with attention not hyperactive

Hi all I'm so glad I've found this thread. DS is 15 and was diagnosed in January, he is struggling massively. Almost thrown out of his mainstream school and honestly his last day there we both cried as he found it so difficult and was then labelled a problem child

He moved to an alternative provision and they are so great with him, so caring, but even wwith class size of 4 or 5 he cannot concentrate at all. He's described it as having loads of those little wind up chickens set off in his head going off at the same time.

He also has dyslexia, Irlen syndrome and dyspraxia so is embarrassed to write at school and is mega shaky all the time? I feel like that is related to blood sugar so trying my best to up his food intake but as I'm sure you all know it's nearly bloody impossible. He's 6 foot 4 nearly and skinny but going to the gym so trying to get hench!

We went through Right to Choose so now got to wait to get to the front of the massive CAMHS medication wait list which might be 12 months.

I feel so sad for him all the time as he is so, so bright but can't get any of the thoughts out of his head and onto paper. Hoping that medication helps eventually.

@DungareesTrombonesDinos this sounds very hard and I’m so sorry your ds went through all this at his last school. You sound like an amazingly supportive dm and thank goodness he has you rooting for him. Our dc are totally dependent on school and individual teachers “getting” them and if they don’t the dc just really suffer.

The alternative provision with small classes sounds like a step in the right direction and I’m glad you have the diagnosis. I hope the medication wait isn’t too long for you. Would you consider going private at this stage to get medication? I completely understand this isn’t always an option though.

@Jedstre our local choose and book diagnostic services don’t seem to offer medication either, which is such a shame. We had to go private as we just couldn’t wait because ds was not coping at all but appreciate we were fortunate to have that choice. I hope you can get medication sorted out now through a private route.

@LoveMyADHD how is the clonidine going?

Thanks @MissHavershamReturns. Following RTC did you then go private to get an additional diagnosis so you could get medication? The problem is I know our GP won’t do shared care arrangements.

Does anyone have experience of Methylphenidate causing severe meltdowns due to increased sensory sensitivity in kids with AuDHD? DD started taking it at the beginning of March and her meltdowns are off the scale. Multiple times a day and getting her dressed is a daily struggle. It never used to be this bad, although they were ramping up before we started medication. We’ve tried three different types now (currently on Mediknet) and she’s seen no benefit in terms of concentration yet. Feel like stopping altogether. Her prescriber isn’t answering my calls - we haven’t had a review for a month now. Really don’t know what to do.

It’s not up to him, he must accept shared care
did he actually say he won’t?

how GPs though want it to work is for you to be 100% on dosage before moving forward as they wouldn’t be doing any reviews or titration for you

I would not think to far along , it ll stress you out; as a first step you can try to get her seen and get her on some drugs and you take it front there x

Medikinet caused proper mania on my kid; I am talking mania! Schizophrenia!
we were ready to put him on antipsychotics!

I thought puberty brought out issue in him..
it wasn’t until a doctor friend of mine suggested I get his meds review

we are now on Elvanse.. more focus on him than Medikinet and rebound not the worse

perhaps proposed to doctor

Thank you @LoveMyADHDi will do if I can ever get hold of him. Think we’ll just stop medication u till then. She does feel almost psychotic at times. It’s really scary.

Day 2 today minimal dosage
different kid!

His hyperactivity is a massive problem normally ; we don’t give stimulants on weekends and he is a mess

day 2 Clonidine, he’s calm, much less stress, he managed to regulate his emotions when upset a couple of times and he managed to get work done with no panic
minimal silliness no chaos !

just praying it continues!!

are you thinking of trying out? It’s quite easy to get hold of x

Oh yes honestly I was ready to ask for schizophrenia meds

we didn’t have this before as much as this, it happened last 2-3 months after we increased dose; we had to increase as it was not working as good , so it was just a crap cycle

how old is DD does she have the issue only on rebound or throughout the day? Do you see any positives from it

please don’t worry easy problem to solve, as soon as you get seen

She is like this all day, it’s not just a rebound thing.