ADHD - Medikinet

[Marshmallow09er]

Hello

So, DS (9) is autistic, he has an EHCP with full time 1:1 support and lots of external specialist input too (SLT, OT).

He's extremely demand avoidant (interestingly now too he can articulate it all pretty well - 'I just can't stand anyone controlling me and telling me what to do').

Anyway - as he's got older, and as we've put things in place to support him it's become more apparent there is more going on and his impulsivity and attention issues have become much more obvious.

School and we did the Conners Questionnaire and he scored really highly.

I thought I would have to convince his paediatrician, but she said 'I've known him since he was 2 and agree that I think he has ADHD' straight away.

So, and it's never an easy decision, we're trying medication - mainly because he's so unhappy with how quickly he flares up, how angry he feels a lot of the time. How frustrated he gets with his inability to focus on anything, how he hates his 'memory of a fly'.
If this helps him I feel we have to try.

So finally - here is my question! (I could have put this at the start without all the preamble but I suppose I wanted to show our journey to where we are).

We started on 5mg Medikinet for a week - so side effects, but no changes either.
He's now on 10mg XL, week 2, - again, no side effects, but no changes either.

I've called his paediatrician to discuss.
Is the dose too low? Is it not the right drug?
Also I suppose my fear is what is methylphenidate doesn't help him at all.
I've heard people say it changed their lives - but I also know of adults who say they hated it.

So far DS says himself he feels no different either.

I think I just need a handhold from someone who has walked this path before.

Thank you (apologies for not being concise. It's just not in my nature I have concluded!)

10mg is fairly low for a 9 year old and it probably will be increased if he is a good weight. My ds is 9 and we go back and forth about doses increasing by 5mg every year to find the sweet spot.
We’ve been on 10mg for a while but this has felt like the right place- for now.
Don’t write off Medikinet just yet, we’ve used the methylphenidate family and this was the easily tolerated out of them all.
Let the pead increase it - I think most 9 year olds can go to 20/30mg but you should notice 20mg.

Thank you so much for replying!

It's low. Ds is 9 on equasym xl (similar) and he's on 50mg. We had to move fairly quickly up to 30mg at age 7 before seeing results, then 40mg for short while at 8 then 50mg.

And side effects are scary but we found ds tolerated them well. We had stomach and head aches in the beginning. Ds diet is altered as he doesn't eat from when he takes his meds until evening. So he tends to eat lots in the evening

Thanks so much for the reassurance both.

I'll move over into the other medication thread now I know it's there rather than have lots on the go at once