ADHD Meds - scared

[Nicki05]

Hello Everyone,

I would really appreciate your advice. I have a 7 year old recently diagnosed with ADHD who has been prescribed medication. I have done lots of research and feel that is the right thing for her BUT then I opened the packet and read the leaflet! In the leaflet if talked about risk of sudden death! I have researched it and recent research suggests that there is no more risk than the general population however I can't seem to get over this hurdle! How did others do it? In need of some support :-) Thank you x

Nearly all medication says scary stuff in the leaflet...see if you can book a phone call with your GP to discuss risks and benefits?

I just saw this book recommended on another thread. Might help?
www.amazon.co.uk/Parents-Guide-ADHD-Medicines/dp/1787755681/ref=mp_s_a_1_1?crid=3467Y5PE73BU3&keywords=the+parents+guide+to+adhd+medicines&qid=1677403945&sprefix=%2Caps%2C114&sr=8-1

Hi, happy to have a chat if you pop me a pm. Can''t seem to do it from my phone. My 8yr old son has just started on meds for ADHD.

My son (10) started on Medikinet just before Christmas and has had very few side effects, doesn’t seem especially off his food and his sleep was a bit disrupted when the dose was increased, but he was never a good sleeper anyway, so hard to tell if it’s the meds.
The benefits however are huge - I went to an open morning in his class before he was on the meds - there were tears, he tore his work, he walked out of the classroom, he was in a real state. We had another open morning today and it was like a different child! Sat quietly and happily doing his work, happy to wait for me to talk to his teacher before spending time with him. And he can tell the effect it has - he came home from school saying “mum did you increase my dose (I had) because I didn’t shout out as much in class today”. His teacher has seen a real improvement and so has he. He’s boosting his self-esteem as he is not being told off as much and he is able to follow what the class is doing, rather than his brain drifting off. His emotional outbursts (which really stand out now he is older) have lessened which means he is less embarrassed in front of his classmates.
I don’t remember anything about sudden death on the medicine pamphlet for Medikinet, but the headaches, tummy aches and sleep issues did concern me. But now I see the benefits I would do it again every day of the week.
Good luck! x

Supersue, that sounds like a great outcome for your son after Medikinet, the big emotional outbursts are what I find hardest though they're usually reserved for the home. We are only day 4 after starting Equasym XL on a v low dose so it's too early to know how it will pan out longer term. Can I just ask if you have any strategies when the meds wear off? My son's ADHD symptoms return around 4/5pm and our after school helper is struggling a bit.

@Pheath we don’t have a strategy for when the meds wear off. His dad picks him up
from school each day and he goes straight home for chill out time. My son does notice that the meds are less effective in the afternoon and he starts calling out more! His dad complains that he is not in a good mood at pick up, often upset about having a bad day, so I suspect this is probably the wearing off of the meds and how it affects him. I did speak to the mum of a boy who was having a small “top-up” dose at 1.30pm, administered by school, and she found that helped him, so not sure if that is an option? Though I did find that his side effects eased off after a week or so on a new dose, but if it’s the ADHD symptoms you are trying to avoid, rather than the side effects, then a later dose is the only thing I can think of, but the at does run the risk of going on to affect his sleep.

@Pheath I think they would want your son on the meds for a few weeks before changing anything though.

Hi Supersue
Thanks so much for your reply. It's a shame the meds don't last for the entirety of the day especially as my son does after school activities (yes it's the return of the symptoms that are causing the problem). Yesterday he was back to being unregulated and not always focussing well during Cubs though his concentration was fairly good at school.

However it's v early days, we're doubling the dose on the weekend so will see how we go with that, realise it could be a long process. I've heard about a top up dose but guess there could be a knock on with appetite and sleep so quite a balancing act. Bedtime at present often takes 1.5hrs so not sure I could face it going on even longer!

Nicki - hope you're feeling better about the meds, do have a look at Prof Hall's book if you get a chance, it explains things very well. The meds really are very safe if monitored by a good prescriber.

Hi everyone - and @Nicki05 hope it’s ok to ask on your thread but it sounds like you’re all the people to ask - I have started the process of seeking an assessment for my DC. Apparently the waiting list for assessment is very long and we’ve been advised to go private while waiting for the NHS assessment (have made the first visit to the GP and written an account of the issues) but private is so expensive.

I’d be really interested to know the process you all went through to get a diagnosis 🙏🏼 I’m so worried about my lovely DC, who is struggling so much at school. Thanks!

@AtrociousCircumstance I’m afraid we went privately for my son’s diagnosis and it cost a fortune. He was diagnosed with ASD by a private firm that was outsourced the work from NHS CAMHS so we decided to use them for the ADHD assessment too as they had provided a thorough report for the ASD diagnosis and my GP confirmed that the NHS would accept their diagnosis report given they use them for some of their workload. We still had to wait about 4 months from referral to assessment. Our GP said to go back to him once we had the diagnosis report and he would refer us to CAMHS to take over his care and assess whether he would benefit from medication.
so CAMHS contacted me and agreed he could be added to the “ADHD medication review service” and there we sat for months with no one able to give us an idea as to when we might be seen. I quickly lost patience and contacted the firm who had diagnosed him and they confirmed that they did a medication service (for a fee!) and so we booked on and got the medicine quite quickly.
We do have to pay for the medicine as it is a private prescription, but my GP said that as soon as he is settled on a dose he’s happy to take over the prescriptions (he can write prescriptions based on what the doctor has agreed). The doctor writes to the GP every time she changes his dosage. We have the review a week on Friday and he seems okay on his current dose, so hoping we get transferred over.
Still not heard a peep out of CAMHS - I figure when I finally do it might be in time for a review.
Not sure if you were actually after info about the assessment itself? If that was what you meant, then I can confirm that initially I had to answer N online questionnaire as a screening tool to check my son met the benchmark for assessment - they don’t take any money at this stage fortunately! Then after they agreed to assess, both school and I had to answer questionnaires about his behaviour. Then they wrote to his GP for medical history, then we were invited to their office for an assessment with the doctor which took about 60-90 minutes. She agreed there and then that he has ADHD and she showed us a video about medicine but wasn’t pushing it at all, just said it was an option to consider.
The diagnosis report came about 3 weeks later and included info about strategies to help and places to find support. Hope that helps!

Similar situation to PP but more involved as 2020 and autism as well. Have spent £4k to date on assessment and therapies. Sorry!

Hi AC, we also got our ADHD diagnosis privately although only after CAMHS completely dismissed us and refused to take our concerns seriously putting all my son's problems down to autism. We were incredibly disappointed and felt very let down with them, all the more so as we'd waited nearly 18months for the appt. Our private assessment which was expensive (in the region of £1k) was a much more positive experience and the doctor was under no doubt immediately that my son had ADHD, combined but primarily inattentive. Think they can usually tell from the questionnaires and tests you do prior to the appt and the school's feedback. Obviously it's not a diagnosis you'd ever want to get but we felt very relieved that at last we'd finally been listened to and we might be able to access some treatment as we've tried so many strategies up until then (SALT, OT) to no avail. As previously mentioned it's still very early days and we've been started on a very low dose which will be increased gradually (low and slow is what's advised for children with autism I believe). So far it's been mixed and can't say it's made a dramatic difference although there are certainly times my son has been calmer (and more focussed) in situations he would otherwise have got very upset about. I'm hopeful as the dose increases we'll see more dramatic improvement of symptoms.
Do chase CAMHS now and then to see where you are on the waiting list, some CAMHS's are better than others I've been told, we were particularly unfortunate and just think their main objective was to bat people away and discharge.

Good luck for your DC, it's such a worry when they're struggling at school.

Thank you all so much. We are right at the beginning of the process, very aware of the massive wait list for NHS support plus the high costs of private assessment and care. It’s a stressful place to be so I so appreciate hearing your stories.