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.

They helped mine re engage with education. She started them in Feb as they gave to titrate. She was back in education in the following September and is now at university.

hth

Yes, it does. Thank you so much. This thread has given me some hope to hold on to. Thank you.

She was out of education for 18 months.

your son sounds just like my daughter right down to the tics.

She was diagnosed at 14 but was on a wait list from about 9. We went private when she had a complete meltdown in the car and tried to open the door and jump out on motorway.

The first medication she tried was concerta and the day she first took it was the first day I ever had a proper back and forth conversation with her. Unfortunately, it made her feel like a robot so we switched to Medikinet.
it saw her through her exams, stopped her impulsiveness and helped her to sleep better at night as she would be exhausted when it wore off.
Short term memory was and is still an issue but she is now in the habit of setting alarms, using post it notes and reminders on her phone. These habits are just as important as medication and even though it takes years for children to think to do it for themselves it good to teach it from a young age.

she is 18 now and still takes it but only on days she feels she needs to focus otherwise she prefers not to.

And she’s 19 now. The girls who hid in her bedroom for 18 months and wouldn’t speak to anyone is just going on her first pub crawl with her new uni friends tonight.

My 15 year old Son had a really bad response to methylphenidate , we are still dealing with the consequences 9 months on. It triggered gastrointestinal issues and severe anxiety, so bad its taken a year ‘out’ of his normal life. It did help with attention and school‘ performance ’ but the damage has far outweighed the benefits. A lot of young people ‘fail’ a trial of ADHD meds so having vigilance and reasonable expectations is essential.

My ds' GP does a shared care agreement with his private psychiatrist who diagnosed him, so ds gets his repeat ADHD medication (Elvanse) free on the NHS.

The medication has been transformational. Ds has gone from a frustrated Grade 5-6 underperforming student (who was hiding the fact he was unable to focus enough to revise for his GCSEs and mocks) to a Grade 8-9 student. He is now at uni and loving it. The effect on his self-esteem is worth it in itself.

If a drug can have such a profoundly beneficial effect on ds, who cannot help his ADHD condition as opposed to other 'self-inflicted' wholly preventable conditions that the NHS pays for, I don't see why ADHD drugs should not be free on the NHS.

That is just brilliant. She has done so well. Hope she has a great time!

I love this.

And I’m so pleased more girls are being diagnosed and getting the help they need after being overlooked for so long.

In terms of academic progress DS went from a 2 in his English mock to a 7 in the real thing.

Crazy! He is quite bright but was unmotivated and did zero work!!

DS2 was observed in class by a specialist ADHD nurse aged 7 and medication was suggested - he had a less than 30 second attention span but ASD was also suggested. Medication was postponed but after his ASD diagnosis when medication was sought for ADHD the gp said he would have to go on a long wait list for CAMHS. It made no sense so we went to psychiatry UK. Who said NHS reports were unequivocal. GPs took over prescribing and also do reviews re weight, BP etc plus extra medication review. There is no reason why parents should pay due to NHS failure.

DS2 is also still autistic which complicates things but it has enabled him (with support from disability services now that he’s at uni) to focus on his studies. Meds affect his appetite but wear off later in the day and if anything he sleeps better. He chooses to take medication every day including weekends and breaks lasting 4 weeks. It makes him feel normal mentally without the physical side effects of stopping and starting. He’s also on a high dose so has to titrate if he takes a break.

The medication shortage last year brought home how important medication was to enable DS2 to function.

We had DS14 appointment with his adhd nurse today - he is going to give methylphenidate a try

Just to update..I think I commented earlier on on the thread when DS (15) had just started on methylphenidate. It’s been a life changing experience for him at school (and me as his parent at home)

All of his teachers (bar one) commented at parents evening last week how well he is doing now and what a different person he is to have in their class now. He has gone up by 2 grades in his latest mocks and is now actually enjoying school and is talking about staying on to do A levels - we were a long way from Any of this last year and it’s been a great boost for his confidence as he was always the one getting detentions and into trouble before for ‘messing around’ .. which I now see was as a result of him being unable to focus and concentrate in class..

Things are so much easier at home too. He’s still the same him - but more organised (still disorganised but better), not taking 15 years for him to do something when I ask, doing homework without me cracking the whip nearly as much and we are clashing a lot less.

We got a private diagnosis from an NHS approved clinic and his shared care request was approved last week - which is fortunate as the fees and medicine costs were crippling the last 4/5 months.

He was lucky in that the first one he tried seems to have worked, as it did for DD (18 who is on an amphetamine med) but I have friends who have had to try 2 or 3 at varying doses in order to find the right one for them. I think that’s quite common.

It’s a rollercoaster for sure and of course deep down most people don’t want their young person / people to be on medication but in both cases I can see what a positive difference it makes to both of their lives so on balance I have no longer have an issue with it.

We had the same experience (I might have posted on this thread before) but meds were /are truly life changing. Teachers noticed the difference and there is such an improvement in quality of life. We went private with one child and it was worth every penny. Thankfully the other child is being seen publicly as it's expensive!

I echo the experience of @Hello39 , @beasmithwentworth and @Delatron regarding the transformational effects of ADHD medication on ds. Particularly on his academics and his self-esteem. On medication, he is firing all cylinders v. being frustrated at his inability to focus and realise his potential.

I can also say that it has been a game changer here. To be honest I put off having my 15 year old assessed for a long time because he was so called fine. However he begged for it and as he moved into gcse years his restlessness was getting bad, we were getting constant complaints from school about him chatting too much and wandering around distracting children. His grades were always ok and I just thought he was lazy and would find his feet like his older brother. His year 10 exam results were extremely erratic and I thought we had to sort it out over the summer and pre GCSE year. we had him assessed privately over the summer and the attention span bit was off the scale

He started meds in October and the results are nothing short of remarkable. It did affect his appetite but that seems to have passed. He has not got into any trouble at school, his report this term was outstanding and the difference in his grades are mind blowing. He was getting 3’s in his science and school were threatening for him not to sit the higher paper. His last 4 tests have been 6,7,7,8 and he has moved into the top set. He lost focus in his year 10 history exam and although his classwork had been about a 6 he got a 2. His last test result was a 9! He’s so much happier too and that’s the main thing. I wish we had done it earlier

@christmassytimeagain

Same here. My DD’s was more obvious and it went alongside a mental health episode that lasted 4/5 years so all of the attention was on her for a long time and DS just bumbled along. I genuinely thought he was just a typical teen messing around too much and not really caring much about school. Similar here in terms of the the cracks really showing in year 10. O don’t know why it hadn’t occurred to me that he might also have ADHD. I feel bad I left it so long when he was so clearly struggling. He’s just gone up to higher maths and science and is so much happier (similar - before was 2s and 3s). I try not to look back and just be grateful that i did it when we did.

Same here. I was dealing with DD who was also struggling with mental health and autism and he seemed to be fine and like my eldest who doesn’t have ADHD but who also didn’t work until year 10 so I put it down to that

@JellybeanQueen0105 - I hope you don’t mind me asking but my son sounds identical to yours. He’s 14 with ADHD. We are trialing medication for ADHD but not sure we are on the right thing. When not medicated, he’s so emotionally deregulated, can’t cope at school, irritable and becomes angry and destructive. When he has an outburst, he can throw things and smash things. I wonder which medication your DS tried and found really good? You said medication was a game changed for your DS, I completely know that everyone is different but I’d be really interested in knowing what medication it was.

My 19 year old has been on meds for 2 weeks and says already it is life changing.
feels calm for the 1st time in years and actually able to focus.

Just to update - 18mg of methylphenidate (Xaggitin) has had next to zero effect on DS. Awaiting a call back on upping his dose. Good news he has had no side effects.

Would anyone else be able to share the dosage of medication that their children are taking? My 14 yo Ds is on 18mg xaggitin xl (methylphenidate) and not having any effect.

15 year old DS is on 40mg medikinet (Methylphenidate)

DD (18) has been on 50mg Elvanse (amphetamine) since she was 14.

They both need them for quite different reasons (DS needs his seemingly just for focusing and for DD hers gets her out of bed in the morning and allows her to function and get stuff done. It acts as a kind of antidepressant) and each of their respective meds suit them well.

That’s great I didn’t know if I was over reaching my expectations of 18mg. Still not able to get him out of bed or even summon the will to put the tablet in his mouth and swallow it is a mission on its own.