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.

I (late 50s female) recently got an ADHD diagnosis. I decided to try the medication and I feel much better for it - in particular much less anxious . I am far calmer and more focused.

My sleep has improved too, although my psychiatrist has given me another medication that helps with sleep.

Your DS has nothing much to lose by trying the medication because it is out of your system very quickly, so it has any unpleasant side effects, it won't be for long. My psychiatrist said according to the leaflet in the packet it wears off after something like 8 to 10 hours but she said that it is actually around half that or less for most people. In my case I could feel it wearing off after 3 hours 50 minutes. Apparently that sort of time is typical. (This was for Elvanse).

If he’s a teen let him try it. He can tell you if it’s worth it. I’m adhd dyslexic dyspraxic and autistic and don’t take meds for the adhd, I tried them and had some you can take now and then not needed every day. They were great for focus and I wish I’d had the for uni on exam days and when I had essays to focus on and get done. Personally I found they increased all my sensory issues and as day to day my job does not require academic focus beyond what I can do in my general distracted poor attention state I didn’t find them worth it.

as a teen he’s more than old enough to try and see if it helps. The difference when you brain can focus is significant and if he has the opportunity to focus during gcse year it’s definitely worth trying to see

My ADD son also has problems with writing (dysgraphia), concentration & focus and takes hours to fall asleep. He is very bright but was failing at school due to lack of focus. We were reluctant to use meds but decided to try. He’s on Equasym and it has been life changing. He’s been on it for a year and is now flying at school. He also has melatonin to help him sleep. Please do consider it for your son, it sometimes takes a bit of adjustment to get to the right dose but keep talking to him about it and let him be your guide as to how well it is working for him.

Gosh thank you all so much. I had to go somewhere and checked in to so many replies I am touched that you have taken the time to share your experiences. They seem to be overwhelmingly positive and actually regarding sleep, which is my biggest concern it hadn’t occurred to me that there might be other ways around that such as melatonin. Thank you again.

My GP agreed to shared care. I was diagnosed earlier this year. DC2's GP likewise. I know a lot of GPs won't do it at all.

When I was discussing the possibility of shared care with my GP, she said that if the surgery didn't agree to shared care, the other option was to have a referral to the NHS psychiatric team to ask them to review my diagnosis and medication. Apparently that would have taken 18 months. Happily, I had no need to go down this route.

Would anyone mind sharing how much might it cost if you end up having to cover the medication privately please?

We pay 60 quid a month for Xenidate.

We did pay 120 a month at one point. For Elvanse l think.

I’m actually glad to hear it affects appetite. DS is overweight and a hugely compulsive overeater.

My dd was. Always after sweets and cakes.

Lost 3 1/2 stone on it. She’s now a size 10 and keeps it under control.

We tried medication very recently with my ds16, GCSE year. They are very effective in helping him concentrate for short bursts. However, I have concerns that there is a comedown effect for him where he was depressed later in the day when they wore off. At the moment, we are managing without, which has been made possible by changing his way of learning, but if he got to a place where he wasn’t able to concentrate or learn again, we would go back to them or trial a different type.

My DD who is very capable got some really poor GCSE grades which made us wake up and take her symptoms seriously. She has all the symptoms of your son + hypermobility! The medication was an absolute game changer. She managed to rescue her ALevels and now in Uni. It was unthinkable when we got her predicted-grades!
sleep is tricky and so is appetite loss. But overall it’s a non-option to not take the medication because her overall quality of life would be much worse.

You need to consider if the benefits will outweigh the difficulties and therefore make it worth it. I think 15-25 are such important years that it’s worth considering even if just for this period after which they can ‘learn’ coping strategies better

ADHD meds aren't like anti depressants that you have to take every day and are a nightmare to wean off.
I would suggest your son tries them and see how he gets on.
DD says they certainly help with focus at lessons. They haven't helped her with her impulse control or her seeking dopamine through junk food.

Thank you!

Privately costs £100 (Elvanse) but in 6 months I put it under shared care with my GP and now it’s a regular prescription (free until 19th birthday and prescription cost after that). Other meds are cheaper so depends on which one works for you.

Our gp wouldn’t pick it up. They are advised by the BMA not to. And increasingly they aren’t picking up ADHD meds.

DD not a DS (14) but she was diagnosed in August and we started meds last week. She found the first week hard - she was very emotional. Interestingly despite never wanting to talk about anything and appearing to be completely disengaged from the process she has been remembering to take them - I think she obviously did feel like she needed them just didn’t want to show it.

She has settled on them this week and I think it is helping her. We our first progress review next week.

For me I really wanted her to try them - mainly because with unmedicated ADHD they are at high risk of addiction / other risky behaviour and at this age I think that’s a real worry.

OP, I wish I had ADHD medication as a teen, it would have changed my life. I’ve been on it for a year and anxiety has disappeared, I can focus, prioritise. It is a life changing drug. If it doesn’t suit him you can take him off it. The effects only last hours.
As PP has said, a lot of people (including me) have internalised hyperactivity which means a muddled head and racing thoughts all the time, after taking medication it was the first time in my life my head felt peaceful.

give it a go and if he or you are worried about it just stop taking it.

my ds has been on adhd medication since he was 6 yrs old he is now 23 and still needs them . In regards to his diet/ he has a huge breakfast - normally Pyrex bowl of porridge , maybe scrambled eggs, couple yoghurts and a banana or 2. He then eats nothing at all during the day till 4pm when medication has worn off - he then has a few more bananas, couple apples,pears, berries , kiwis, a large dinner and snacks till his bed. His weight is pretty spot on for a 6ft2 lad. I stoped worrying about the not eating during the day as I know he eats plenty at breakfast and dinner .
Also McDonald’s milkshakes are great for weight gain due to the cream in them.

My dd diagnosed at 14 now 20 - refuses all medication , expelled from 2 schools, no GCSEs and just started at college , is talking tentatively about getting medication now as realised she needs help .

Yes, we had a Right to Choose referral which took 11 months. I nearly pulled her off the list because CAMHS said that we didn't need to the RTC because they had validated and accepted the private report. But I wanted to make sure that in the future, DD3 doesn't get push back because her report is from a private provider, so I kept her on the list. She had that assessment on Sunday, and they confirmed her diagnosis.

My GP said that the reason NHS England has introduced the guidance is that people are getting private diagnoses, getting medication, getting shared care, then stopping the private care. This means the GP ends up responsible for the medication management, and they're not experts in ADHD medication.

Ritalin was £60 per month
Elvanse was £90 per month
Dexamphetamine was £200 per month because DD3 needed two different strengths to make up her dose, and it was twice per day, so she needed 60 of each per month.

I teach a few children who are on medication for ADHD and the difference when they started taking it was astounding. I know the moment they walk in the room if they haven't taken their medication that day.
Listen to the Louis Thereoux podcast when he speaks to his cousin Justin. He gives the best explaination of how ADHD feels.

My daughter was diagnosed in year 1 and the difference medication has made in her academic life is significant. I really struggled with school and eventually scraped a degree but I was also diagnosed age 40 and the meds have done me a world of good.

My DD got meds age 19.
cost 70 a month.
she takes a short acting top up in the afternoon as well.
no appetite impact.
sleep actually improved a bit,

melatonin doesn’t work for her. She does other stuff for sleep now - mostly trying to get out and get some sun, but as a uni student if she works through the night no one really cares.

I’ve had lots of direct experience to the extent that I have worked in a special secondary school with lots of teenagers with adhd. It becomes very very apparent when they have run out of meds or are trying a different dosage. They become anxious, deregulated and very unsettled and unable to focus or manage the school day without some sort of melt down or shut down. I strongly recommend giving medication a go. It streamlines their thoughts and calms the mind so they can focus and achieve school work.
My nephew is not on medication but drinks coffee as the caffeine has the effect of helping him process his thoughts better so he can study.

Have a look at the RTC pathway - I myself went through right to choose in Jan - was diagnosed in may and got medication in June , absolutely has changed my life. My eldest daughter and youngest are both likely ADHD, school have said as much and it’s clear as day to me, so they have both been put through the RTC pathway - if you go into ADHDuk website they have a table which outlines all the RTC providers who offer assessments to children , they provide the estimated wait time for assessment and then if they offer medication, the wait time for that and then also if they do shared care. There’s also section that mentions if they provide medication if shared care is refused , make sure you choose a provider who does. I went with careADHD - unfortunately they don’t yet take on children ( there’s a section that says they will be after December of this year hopefully) but at the moment my go aren’t providing shared care so I get my medication from them directly at the same cost I would through the nhs. This will be the same with others just read through their small print, but I’ve selected Psicon for them, who also offer this so whether the gp offers shared care or not I’ll only pay the standard nhs charge , which for kids is free.