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.

DS was 6 when he was diagnosed with ADHD. In the process of finding someone who will assess him for dyslexia.

Medication has been LIFE CHANGING. We had a child who was having extremely violent meltdowns in the car in his pj's and refused to go to school to a child who happily runs into school fully dressed and ready for his day ahead.
No sleep issues here with medication. He is so tired from the overload of the day he is knockout by 8pm most evenings. His appetite is slightly affected but by the time school finishes he is hungry again.

We give him a break from the medication over school holidays on advice from the psychiatrist.

I was really really concerned and on the fence for a long time but I am so so glad we did it. His mental health has hugely improved, he can access his education every day without being deemed as "misbehaving" or "challenging" and I have a kid who is for the most part quite happy and likes going into school.
Mornings can still be quite tricky as we try and give the meds as close to going into school as we can but we just put extra processes in place as a family to help him manage.
I would recommend them to anyone and everyone. DSs psychiatrist has recommended i also get an assessment when possible 🤣

As far as I'm aware, more than one study has shown that early intervention with stimulant medication greatly reduces the likelihood of self medicating with illegal substances and/or alcohol etc.

I'm sure it's something that Dr Russell Barkley has talked about, he has a website and YouTube channel with loads of info and videos of seminars etc.

Massive difference for my teenager - gone from barely coping with secondary and very anxious, to doing great so far in exams. Evenings getting homework done are still tricky, thanks to the fact that even long-acting medications are generally only designed to cover the work/school day...

I never thought I would medicate my ds. We were 'coping'.

Then the medication supply issues hit last year/year before and I was teaching pre-teens that had run out of meds. Omfg, the difference was unreal. It was like Jekyll and Hyde with 1 child. It was so glaringly obvious how much the medication actually helped that I completely changed my mind on it and my DS is now on Medikinet slow release and thriving rather than coping.

DS is 14 and was diagnosed inattentive ADHD in the summer, he is very much in two minds about medication. I have managed to bag him an appointment with the ADHD nurse in December. I was just wondering how titration works, since the waiting list for appointments is so long, if he is prescribed a particular medication and it doesn’t suit him or he doesn’t like it or it doesn’t work? Are you then stuck with nothing again for another 6 months or do you speak to your GP? Sorry to sound ignorant or daft I’m new to all this.

They should give you a number you can call with any issues. Or an email address

Ds got a tiny rash with the first dose of his first med. I phoned and told him and they took him straight off it. A week later he got a cancellation appointment, and got a prescription for another one that worked.

There should be more frequent consultations during titration.

There may be side effects - dd missed school due to some side effects starting.

So expect it to take a few months to get settled...it is so worth it in our experience.

And it's not a permanent decision...if none suit him, he can come off meds. But they are worth a try imo.

Ah ok brilliant thank you. I agree definitely worth a try.

Due to a shortage of his preferred meds we gave a different brand a try for a couple of months but my son (14 yrs) didn’t like it (felt sad and anxious) so he refused to take it. We didn’t force it and spoke to the CAMHS GP and they changed the medication. Since then we’ve been fine albeit a few headaches and stomach-aches which is more down to dehydration and appetite loss which is quite normal on certain types of meds. Definitely listen to your son and how he feels on it.

@JellybeanQueen0105 - your son sounds like mine. Please can you tell me which medication your DS is on? My DS has just had a private assessment and has ADHD but the last few months behaviour has been so bad, outbursts and destructive behaviour.

Yes, of course. He is taking Methylphenidate.

Sorry to hear that your son, and you, are going through the same. Being on this medication has changed everything, I would definitely recommend exploring the option with his psychiatrist or gp, if it’s something that your son would be open to.

Hi,

DS age 8 diagnosed with ADHD predominantly inattentive.

struggles to focus, stay on task, task initiation. Behind at school though seems very bright. Writing an issue, maths a struggle but reading excellent.

He was very down on himself calling himself dumb on a regular basis, self-confidence was diminishing by the day. We decided to try some ADHD medication, to see if it would help and his self-esteem would improve.

We started off on Medikinet 5 mg instant release, they seemed to help initially and we were very hopeful. Ideally he would taken an extended relief version to avoid drawing attention to it at school.

. We tried Medikinet 10 mg extended release and the Psychiatrist recommended we tried Equasym 20 mg as typically this suited children better.

On this he was like a zombie, and the come down was really severe. Things were really tough at home and we decided this was not a price was paying. He said there was no joy in his life, he didn’t want to live etc. I do feel this was more to get a reaction than anything serious but unbelievably distressing for me.

We went back to Medikinet, given the pharmacokinetics of the two brands are slightly different, we thought that the come down might be less severe. it doesn’t appear so.

On any of the extended release, he finds it very difficult to sleep. He takes his tablet at 7 am, then could still be wide awake at 10 pm. We can give melatonin to overcome this.

Since he started taking this medication of any form, we find his personality has changed, he seems incredibly irate, difficult, and mean. Over the course of nine weeks, we have tried two different brands, two different strengths after the initial 5 mg dose.

We are not in a great space, not confident to try more medicine, though his meltdowns, poor choices, poor behaviour, seems to continue even if he has not taken any medicine.

This is so much harder than we thought it would be, as affecting family life massively. Really not sure what to do.

School don’t see a massive impact of the medicine, and so we have to wonder if it’s worth well.

Has anybody experienced this? Has anybody had a tough time and then found out it was all worth it? Does anybody experienced side-effects outside of the medication window?

We have a medication review booked with our psychiatrist in a few weeks, though I am reluctant to continue the medicine, if this is the result.

Any details of experience welcome!

Have you thought about trying him on an amphetamine med? My DS is on medikinet and he got lucky as it’s worked really well for him but I know it’s different for everyone. DD started on that but it was pretty much as you described. She’s now on Elvanse and it’s working really well for her. I had a friend who started on medikinet too and she hated it. Now on Elvanse and she said it’s transformed her life.

I do really understand your reluctance and the fear of putting you and him through any more potential pain but I think it’s worth battling through it if you can bear it.

We have now trialled 3 adhd meds and all have had side effects so we have had to stop. They were losing too much weight on the stimulants and became depressed and irritable on Guanfacine.

Do we know whether there is a medicine that works better for inattentive adhd than hyperactive adhd? Or do they all work on both variants but in different ways, but impact everyone differently with different side-effects? I’m so overwhelmed and confused and have first appt with DS’s ADHD nurse on 18th dec to discuss. He wants to try meds but we are both worried about side effects and he is particularly anxious about medication making him feel nauseous.

Depends on the person...it's so individual as to the meds and the dose. If it makes them nauseous..eating first can help. But it might not. Some just cause loss of appetite. Again, there's ways to work around it

It's not a permanent choice...you can try them and see. And it might take a few tries to find one that works and the side effects are non existent or manageable.

OP my DS is an adult now. When he was diagnosed at 12 1/2 it was far less common and I didn't know anyone else in his class with it but his 2 male cousins both had it. The specialist advised us to give him meds for the ADHD. I resisted for over a year because at the time less was known about it and the medication had side effects of appetite loss. Eventually I gave in and my son improved so quickly. He moved up from the 4th Maths set to the second set in 2 years. He could sit and finish things for the first time in his life. He moved to the top Maths set and moved up in English and Science too. His teachers told me it was like teaching a different child. The problem was he had missed souch work from previous years so he had many gaps in his knowledge. He did ok on his GCSEs certainly better than our wildest expectations 3 years earlier. He refused to stay on to do his A levels though and once he reached 18 he told me he didn't want to take the medication anymore because it stopped him being himself he said. I tried hard to understand. I think if I had let him have it earlier he might have got more used to it and saw more benefits of it. Anyway as an adult he has held down a full time job. He has a mortgage and buying his own home. He has a long time girlfriend and is thinking of proposing next year. I think he's succeeding in life. He is happy but he is still impulsive and doesn't settle to things for very long. He opens his mouth before he thinks. I am proud he is managing his life without the meds though.

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.
He can't independently study at all, is exhausted after school mentally.

These are the impacts of dyslexia and dyspraxia. My older DD has severe dyslexia and the impact of it is that it takes way more effort to read and write than an abled learner. She doesn’t lack focus, she just tires out faster and hits a mental brick wall. After a full day at school, there is nothing left to for independent study.

So I don’t think these are signs of ADD or ADHD. They’re very typical effects of dyslexia and dyspraxia.

Workarounds my DD had were the ability to give oral book reports instead if written. Studying she did by watching videos or listening to audio books instead of reading material. She had all the extra time in exams and a scribe- so she would dictate her answers verbally. I think that is what I would focus on in your shoes- ways to reduce the effort because it is the decoding, encoding and motor skills that take 100% the energy to do which cause the child to tire quickly. Anything that lightens the load, conserves the energy means their natural intelligence can shine through.

My dd doesn’t have dyslexia. She has severe adhd. She’s exhausted all the time. It’’s because the brain goes so fast. Her cousin is the same.

There is a link between adhd and chronic fatigue. It’s not about dyslexia or dyspraxia.

My young person suffered significant side effects from adhd meds. They lost so much weight on the stimulant type they had to stop. With Guanfacine they became nauseous and irritable so had to stop, and are currently suffering from withdrawal symptoms, have become anxious and depressed. My young person is hypersensitive though, I don't think this is necessarily typical. I would give it a try but just monitor mood etc carefully, so that you have a proper exit strategy.

Its important to give the meds immediately after a meal because the meds do suppress the appetite.

Yes @caringcarer exactly this. Both of my DCs have lost weight on their respective ADHD meds (one on amphetamine and the other on Methylphenidate). The positives far outweigh the negatives but you do need to conscious don’t you? My DS (15) just got his mock gcse results back and has gone from 2s to 6s after 3 months on meds and our home life has also become so much easier.

It really helped mine in so many ways it's tricky to get the dosage right (and then they grow!)

My DS just stayed on a very low dose. He felt that was the best way to manage side effects. His grades still all improved but I do wonder if he could have done better on a higher dose.

I'm so grateful to have found this thread. OP I could have written this today for my teen DS, who finally received their diagnosis of ADHD yesterday (already has one for dyslexia). This is giving me the confidence to explore the possibility of medication for DS, thank you.
My DS has completely crashed out this term and is now school refusing. School just don't care and are not engaging. I wonder if meds will help him re-engage and get back through the door. It would be brilliant to hear if anyone else has had experience of this. He wants to be home schooled and just feels huge anxiety and complete overwhelm. Do the meds help combat this?