Experiences with Medication for ADHD

[Indoctro]

Hello my 7 year old is going through a assessment for ADHD and medication has been mentioned

I'm after parents reports of pros/cons/ side affects etc of medication your kids have tried.

I'd just like to be clued up on what the possible medications are and what side effects etc might arise for when we get to
that step.

Thanks in advance

Hi @Indoctro I’m about to start a meds thread separately in the hope of getting some support. We were prescribed Medikinet yesterday and we’ve been told the most likely side effects are appetite suppression, headaches and sleep issues, but in the majority of cases these settle within a few days - by the end of week one.

Ok if you do can you tag me in it so I can follow peoples experience with the different meds. I just like to be as clued up as possible before we get to that stage.

@indoctro I would recommend you reading the Nice guidelines

www.nice.org.uk/guidance/ng87/resources/attention-deficit-hyperactivity-disorder-diagnosis-and-management-pdf-1837699732933

You may also like to do the online course on ADHD meds from Kings College London.
It’s on www.futurelearn.com/ and is called “understanding ADHD: current research and practice”

There is a whole module on the medication with lots of parents sharing experience and the content is excellent.

My son is 12 and has been on adhd meds since he was 8. They have been a game changer for him as he is now able to focus. He takes two different medications now a slow release one and now he takes medikinet too.

@Sirzy thanks so much for replying. I’m sure in time to come it will feel like a new normal but currently it feels HUGE to start him on these meds

@Sirzy what time does he take each and how long do they last?

He takes them both in the morning. The attemoxetine helps keep him at a steady level all through and the medikinet helps with that extra bit of focus for school.

He is still his same bouncy self but more able to cope with day to day

@Sirzy that sounds great. My 10 yr old has just been prescribed medikinet

If your child is anxious the stimulants don’t work well - that’s what we found. The side effect is increases anxiety.

If your child is not anxious then should be ok. Everyone is different - every child is different and unfortunately it’s just working through them until you find one that works plus correct doses.

Stimulates work within a couple of hrs. Non stims take weeks / months to kick in

Good luck!

I don't have any experience as a parent but I am adult with ADHD who started meds late Nov.

One of my most deliberating symptoms is emotional dysregulation, which includes anxiety. Meds have transformed my life. I take the 14 hour slow release elvanse.

1.The first day was unpleasant and intense
2.The first couple of weeks my anxiety went through the roof
3.I lost my appetite during the day and had to force myself to eat - this went on for about 6 weeks
4.The initial dose worked for 5 hours then it was like falling off a cliff emotional and productivity wise. This was incredibly hard as it really brought home how positive my experience of taking meds is and how much damage being mis-diagnosed and prescribed anti-depressants had caused. As a women born in the 80s it took over 20 years of mis-diagnosis until I have received the right support.

After a couple of weeks I wasn't experiencing any negative side effects. I'm still loosing a 1ilb a week but as my impulses/hyperactivity is now controlled I'm no longer binge eating

Would also recommend the King's MOOC on ADHD mentioned up thread.

Expect to be offered parenting support too. If you start meds, expect a process of small adjustments to find the right meds and the right dose; different people tolerate them differently.

They enable my DC to focus enough to learn and he finds them transformative on school days. He decides whether or not to take them at the weekends. He is a slightly dialled-down version of himself when he does take them. Better able to focus and stay in lessons, but more easily irritated. The glorious technicolour unmedicated version bounces off the walls, whilst shrieking with laughter.

It's a trade-off, but they have transformed his self-esteem as a learner.

Not sure how I missed this thread but posted the day after.

Our experiences with medikinet were HORRENDOUS on Sunday. I’m speaking with the provider this pm. Also keen to know others stories.

On 10mg taken at 8am we had…

Severe facial tics until the med wore off mid afternoon. I have never seen him like this, it was awful.

No calmer at all.

Despite the assurance the med would wear off after 8 hours (so 4pm) he didn’t sleep til 3am!!! After we had given him 6mg of melatonin (he usually takes 3 and is asleep at 8.30.)

Absolutely fucking awful.

Oh my god @carriebradshawwithlessshoes I’m so sorry to hear that

Are you trying other meds or sticking with Medikinet?

They say it’s one of the best ones and we have been unlucky! They have recommended a half dose!! I’m obviously apprehensive but suppose have to try before moving on. Waiting for the weekend so I can monitor properly…..

I guess every kid is different so tricky to infer from others’ experiences.

My son has been taking medicine for about 9 months now. We’ve tried a bunch of stimulant preparations (equasym, medikinet and another instant release i can’t remember the name). All made him calmer and more able to focus. All had the side effect of severe appetite suppression, sleep loss and emotional volatility - tetchy and prone to enormous meltdowns, a bit like someone on steroids or who had been taking too much coke would be.

This is only our experience and many others don’t have the same.

Prior to taking the medicine his behaviour was so appalling that any side effects sounded preferable to how he was. But actually over time, trying to get him to eat (over an hour to eat breakfast, flat refusal of lunch and then the whole evening trying to persuade him to eat some supper), and trying to get him to sleep (2 hour bedtimes even with melatonin) became unbearable and i’d rather have him running around like a maniac and smashing the house up if it just meant he’d eat and sleep.

Anyway we’ve just started non stimulant medicine now. Too early to say results but we’ve had no meltdowns which is amazing. At this stage i don’t even care if he pays attention in school any more as long as he and the people around him are safe.

I am new to this - who decides on the medication and reviews it? Is the GP involved? Sorry, stupid questions, just wondering how it works.

I think it varies by area. In mine you have to get diagnosed by consultant then once stable after 3 months gp prescribes

Thank you. By consultant you mean paediatrician or psychiatrist?

In our area it’s a paed

You might want to look at the NICE guidelines for ADHD medication - lots of info in there about how it’s supposed to work

My 8 year old son has done well on Medikinet XL 10 mg. We had to start him off on Medikinet XL 5mg until he was able to tolerate it, then we upped it to 10mg.

I wanted to know if other people give their children meds at weekends please? Currently, we don't but I'm starting to find my son's behaviour more challenging and am considering giving at weekends too.

Many thanks x

@oceanblueship you can't just go to the GP and get ADHD medication, you would need to get a referral to a specialist (which you can do on the NHS) who would then go through the process of diagnosing the child and determining if medication was the right course of action. They'd oversee the medication and when it's stable pass back care to the GP to manage ongoing. It's quite a long process but unlike frequent perception they don't hand out behavioural meds in the UK without a lot of rigour and control. Hope this helps x

@MumofBoys79 yes we do medicine on the weekends too. We're on guanfacine now which has to be taken every day anyway but before when we were on equasym having tried it every which way we ended up taking every day as he was more stable with every day being the same, and also off the meds his behaviour was so dangerous we worried for the safety of him and others around him.

Thank you for your reply @KingsHeath53. That sounds really tough x