Any experiences of ADHD medication for teen DS? Absolutely torn

[Theswisspudding]

I wonder if anyone has had direct experience of trialling ADHD medication for a teenage boy and how this went? I am absolutely torn about it. DS has a diagnosis of Dyslexia (very clear cut from a young age, lots of intervention, can now read ok but will always have big issues with spelling, processing speed etc). He is also quite Dyspraxic and uses a laptop in school, huge issues with writing. It's also been clear over the years that he has problems with attention, just very short focus and has to work incredibly hard to stay on task at all. I have always put a lot of this down to his other issues. He has never had the "H" in ADHD in the sense of being overactive or impulsive and no behavioural issues ever, it is more about attention and focus so more ADD. Over time I am starting to wonder about trying to address it as an issue in its own right. He can't independently study at all, is exhausted after school mentally. He is in GCSE year and starting to think about options afterwards. His overall learning ability on assessment is average so some attainment in education should be possible for him somehow.

Last summer I went as far as booking a private Psychiatry appointment for ADHD assessment, after discussion with his learning support teacher but I postponed it for a few reasons. Firstly he has never been a great sleeper, can struggle to fall asleep and tends to wake up early no matter what. ADHD medication can worsen sleep issues and that really concerns me. Secondly he has had some tics over the years, never very bad but at times quite obvious and I worry about this also being made worse by medication. He's also just generally young and I have some fears about what medication is actually going to do in terms of the overall impact of taking stimulants.

On the other hand he is really struggling and maybe medication would actually make a difference? The cost of assessment is very high so it is an expensive medication trial that may not end up being helpful (years wait for public assessment near us so no point even going there).

Sorry this has been so long. Has anyone had their teen begin medication at this age and really seen benefits or had other experiences that you could share? Thank you.

Which is why ADHD assessment involves a full clinical history. The diagnosis criteria includes a criterion that symptoms must have been present from an early age and that they must be evident in at least two settings.

My son (12) has been on Medikinet 20mg for 18 months. Has transformed his experience of school. He's now meeting expectations in every subject, before he was 'failing' at everything (a primary school with no understanding of ADHD did NOT help). Sadly it has worn off by late afternoon so homework is still a nightmare. It does affect his appetite so we stock loads of snacks. He sleeps poorly so we give him 1mg melatonin several times per week - it's better than him being awake until 2 or 3am.
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I find it fascinating how people act this way with a literal neurological disorder but would never think to question someone’s diagnosis on a physical disability? The diagnostic criteria is stringent and long winded it’s not a little appointment and you are just signed off. You fill in so many forms taking into account so many other things from your life. So insulting and uneducated to come here and spout this rubbish. You aren’t needed here, as parents to neurodivergent children, many of us living with these conditions ourselves, I can guarantee we have done more research into this then you, and are very well informed and very confident in the diagnosis we have.

Mine was diagnosed by the lead nhs pysciatrist for our whole metropolitan area, but privately.

Gp still won’t pick it up.

My dd had no trauma.

She had symptoms from a very early age.

Stop trying to derail the thread. This whole thread is about ADHD. Not trauma. Go and start your own thread,

It is not derailing a thread where the OP is expressing caution about the drugs used for ADHD to mention a really important caveat that when a child has ADHD symptoms it is very important to look into all the possible causes first.

Don’t you think the professionals do this?

stop being a dick.

Could you try and go down the community paediatrics route rather than GP?

My child would have failed school without them, uni would not have been possible, and I don’t see how they could have worked.

With them, they did well in senior school (not so much junior, until they could take the specialised subjects that interested them), did well at uni, and does well at work in a challenging professional area.

Without taking meds in the morning, they can’t even manage to get socks on. That is no exaggeration and I mean it literally.

They are extremely underweight, but were like this BEFORE medication, to the point they needed investigations to ensure there was nothing sinister as they were so underweight. The reality is, they will always be underweight, and that’s okay. They also didn’t sleep much before medication, so no loss there, they survive well on little sleep, it doesn’t seem to affect them in terms of functioning, so it is what it is.

Thank you for the replies. I still can’t really get my head around the whole thing. The info from Psicon said that he could move to shared care but what’s right to choose? I’m worried we’ve gone the wrong way about this.

Right to choose is the ability for a patient to choose their provider. There is a few out there but not all can prescribe medication on the right to choose pathway so ideally if you’re looking for that you need to choose one who can.

are you on Facebook? There is a brilliant FB group dedicated to RTC for autism and ADHD.

I second this , psicon is one that will along with clinical partners ( for children, there are more for adults) clinical partners , however have a huge wait for meds after diagnosis (12-18 months) whereas psicon doesn’t seem to be that big of a wait and both are covered by nhs to cover the cost of the prescription even if GP refuse shared care. If you go on ADHDuk they have tonnes of knowledge around right to choose , including directing you to the providers sites and printing template letters to hand to your gp along with a request to refer them to this specific provider. They also provide a tonne of information on what to do if the gp refuses to refer at that stage, which isn’t allowed, it’s yours and your child’s legal right to choose and you can decide whatever clinic you want to do the assessment , provided they are part of the right to choose pathway and be a qualified NHS provider.

What’s the FB group called please?

I am soon to be moving to shared care after getting a private diagnosis with psychiatry UK. They are an NHS approved clinic and one that is used under RTC.

My understanding is (from a friend who is a couple of months ahead of me) is that some doctors won’t do shared care full stop. You need to call your surgery before booking an appointment.
If it’s a doctor’s that will take on shared care (in principal) and they are happy with the diagnosis report then they will take over the issuing of prescriptions month to month, but they can’t administer an increase / decrease in dose.. The 6 monthly medication reviews still have to be undertaken by your initial provider.

Dd really benefits from the drugs. Shes calmer and able to organise herself and participate in class. They wear off over the course of a day though, so she back to her anxious self every evening. We were told that the response to the drugs is part of the confirmation of diagnosis.

DS is 14 and has been on meds for about 2 years. The difference is incredible. And it's cumulative. A lot of people seem to think it's an instant fix. It's not. But as things get better, they cope better and can start to think of strategies for themselves. Things that make sense to the rest of us were meaningless to him, over time, he's learnt those things himself and now does them. For example, if he has an early sport start, he now understands the importace of packing the night before. Prior to ADHD meds, he literally could not see the value. he didn't understand why his ornings were so stressful. He was confused on why he was always late.

I understand concerns about medication of any sort for young children. But, I also believe strongly that any condition that has been proven to help with specific medical conditions should be explored if your child has that medical condition - from diabetes to ADHD.

Sleep problems are common with ADHD. Again, my sense is that actually, the meds have helped. Again, more cumulatively - as his mind has calmed down and he's learnt to value that, he's actively searching for ways to continue feeling that way. The result is that he is self regulating his sleep better, learning to recognise tired signals etc.

Teenage son age 14. NHS diagnosed, but we waited three years for the assessment. Started meds two years go (Concerta when we could get hold of it due to mes shortage). Gamechanger. Went from detentions every day to star points every day. However, the meds do make him feel a bit sick, headaches and occasional stomach ache. They also kill his appetite until the evening. He is worried about not growing due to the meds so he only takes them on weekdays. He doesn't take them on the weekends or in the holidays. He says classes are more interesting when he takes the meds and I can see it in his results - rather than disrupting the class he engages. I was told meds for ADHD people are like wearing glasses for the brain...

Meds are a game changer, please trial them with your DS. The side effects are minimal, and a lot less damaging than ADHD itself.

Right to Choose is a mechanism where a private provider can be commissioned to provide an assessment for the NHS. To use RTC, the provider has to be directly commissioned by any NHS CCG in the country. Psicon is a RTC provider, but they also do private assessments.

It’s this one pictured

We got a private diagnosis the February before GCSEs. He was failing everything but with the medication passed those that he took and did well for him. He’s got the inattentive type but as someone said, the H part is his brain. Terrible, terrible sleeper. Often doesn’t get off until the early morning and then won’t get/ can’t get up. Often spends all day in bed. Has refused medication since May and is generally tired, angry, very up and down and exhausting. On the meds, he’s lovely. I am utterly done in with the constant drama.

Thanks again!

I’m really heartened by the anecodotes on here and I hope you are too, @Theswisspudding 😊

Same with mine. It’s taken a while for him to even consider meds. We’re starting them in a few weeks and I’m trying not to get my hopes up too much.

I have very mixed feelings...

they definitely helped my daughter academically - her brain started to work again and like your son was just 5 months away from GCSEs

BUT huge drawbacks - sleep appalling, topsy turvy and difficult to get it back. Blood pressure increased, as did heart rate.

Now at uni - is clear she needs them for study or interesting conversations especially with new people. But is also looking forward to having some time off them when she has finished her degree

Has she tried melatonin for sleep?