Concerta - the joys, the worries and the guilt (feeling alone and hand hold needed)

[Frogsandsheep]

I posted in the other SEN section and didn’t get many replies - I was advised to repost here.

Am looking for any advice/ hand hold/ experience as it’s a lonely turn.

My son has asd (v high functioning but it affects him more than people realise), OCD (again hidden very debilitating) and has recently been diagnosed with inattentive adhd. He is very bright but has very poor focus and is quiet so doesn’t often get noticed by teachers.

He has been on concerta for a week and we can both notice a significant difference which is amazing and he has had no side effects.

The only issue is some really bloody unhelpful people have told me all about the long term side effects and have made me feel really guilty both for getting him assessed and medicating him.
These people don’t actually know he’s been diagnosed but were people I thought were supportive a couple of years ago and I shared we were starting the process. So before he was even diagnosed they ‘warned’ me of the dangers of medication and I was told he’s just a ‘typical lazy boy’. Some family and friends also don’t ‘believe’ he’s autistic and definitely don’t understand the OCD (which is severe and mostly intrusive thoughts) and think just it’s about covid germs!

I haven’t told many people about his diagnoses because of the utter lack of understanding and support they showed me when I even suggested it.

I feel worried, guilty and alone but equally more hopeful and optimistic for my son than ever.

Hi Frogs

I’m so sorry no ones picked you up yet, have you tried popping in to the goose and carrot in the chat part of special needs? Most people congregate in there to be honest

@Frogsandsheep Please don't feel guilty,. It is medication for a neurological medical need. Same as medication for depression, my medication for cancer, pain relief, arthritis. My son injects himself with insulin. Do not feel guilty. As a teacher I have students on Concerta and it makes all the difference. The ones I feel sorry for are the ones with parents who won't get a diagnosis and thus the help. Do not tell people - most are ignorant. And do not feel guilty. You are an amazing mum and your son is benefiting from that.

Hi,
I know this is a bit of a zombie thread but found it browsing. My ds has ADHD and ASD and takes stimulant meds.
I’m afraid you get used to people, mainly family for us, thinking that it’s “made up” or “diagnosing normal boy behaviour” etc. What I can say is that they (mostly) cane to understand better in time. As he got older, and I talked about sone examples occasionally, they seemed to realise more. Although some still think “he’s fine” and just “wilful or attention seeking”, when he can’t control things. I have previously shared brief video clips of famous people talking about it etc which may have helped a bit.
I had to first get over my own guilt of his diagnosis , ‘labelling’ etc as we took a long time to decide to medicate. Good luck

Hi Frogandsheep, I saw your message and wanted to ask if you continued your DS on Concerta? I am having a similar dilemma with my DS, 14, who has ADHD. He has been on Medikinet since last September which we're not sure is helping or not as his behaviour at school is still pretty bad. His psychiatrist has suggested switching to Concerta as it's longer acting but, having read the side effects including depression, impact of appetite etc, I am increasingly reluctant to switch him and am even thinking that we should stop medication. We started medication last year out of desperation as his behaviour was so bad and he was at risk of exclusion. There has been some level of improvement in the classroom but he is still getting up to all sorts outside the classroom. I am really worried about potential long term side effects including increasing his potential to get addicted to other drugs which I read is a risk.

If it helps anyone, one of mine has been on Concerta for approx 15 years now and has many friends who have been on it for the same amount of time. No issues at all, apart from being able to function properly 😁. It affects appetite but not sure why this is an issue, just have a big breakfast and accept they will eat nothing/not much during the day then will load it in at the end of the day, no biggie.

My son started on ritalin at 5 .can't remember when concerta became available and switched that and takes equasaym as well .his 30 now. He does have blood test every 6 months but that is for another condition and drugs relating to that. His fine

Can anyone tell me what dose of Concerta a 14 year old boy who is 175cm tall (5ft 9) and about 62 kilos should be on? We've tried, 18, 27 and now 36 and not seen any impact although less than a week on the 36 mg.

It is highly individual. It is all trial and error and it often takes 1-2 years to find the best medication/dose.

Unless the dose is way too low (possible), you should see an impact. Stimulants are like painkillers: you take them, they start working, they stop working, they leave your system. So if there is no impact even at a higher dose, they might not be the right medication for him.

This book is extremely helpful:
The parent's guide to ADHD medicines