ADHD

[Summer70]

Hand hold please. I'm literally at rock bottom with my ADHD ds 12. Formal diagnosis after years of me knowing he was 'different' to peers but we have managed as was in small village primary. Now in large state secondary & it feels like a car crash. I feel like very little had changed since school have been made aware of diagnosis, he's getting masses of negative points for disruption etc. he's also making really poor choices due to impulsiveness. At bedtime he sobs as he knows how upset I am & then next day it all starts again. Moodiness is off the scale. I support with everything- putting clothes out, making breakfast, helping with ever piece of homework, packing school bag, just to help keep him out of trouble. If I didn't non of it would be done. I know it's not his fault but I feel broken by it.

He starts meds very soon, I'm terrified of them making him feel unwell but also terrified of them not working as I feel he could be excluded from school/ friends & general life if things don't improve. I also feel I could have a breakdown if things don't let up for a bit. I'm so sorry to sound dramatic but I'm on my knees. Has anyone been here & come out the other side?

Hey please feel free to message me.

My ds 12 has adhd. I always knew there was something 'different' from a very young age and he was diagnosed at 8.

We put off medication for a while.

He started seniors in September and honestly, all his behaviours just increased so much.

At his school they get sanctions for poor behaviour, three then they get a detention.

From sept to dec he had SO many it was awful. He was so intense in class, disruptive, couldn't sit still, just typical adhd but ten times more intense than it ever had been.

We decided to go for medication in December, as a bit of a last resort. He agreed to give it a go.

Well, he's had 1 sanction since returning in January. And that was for throwing a bouncy ball in the classroom in break time, so I don't really even count that.

He is still 'ds' but he's just changed so much in so many ways! The school cannot believe it.

In fact the other day he forgot to take his med and they emailed me to ask if he had taken it as they instantly could tell he hadn't!! It's made that much of a difference.

I regret not trying it sooner to be honest but that's hindsight now.

I would say he lost weight due to medication at first and we do keep an eye on this and weigh him. But he's still on the healthy line on the nhs chart etc. he was very skinny to start with anyway so more concerning for us.

I've just burst into tears reading this. Thank you. I'm so pleased for you & your ds. It's torture watching them fail & their self esteem getting worse every day. I hope so much that our outcome is similar, I just can't imagine life being easier! How quickly did things improve for you & did you go through many dose changes? Ds starts on xaggitin 18mg.

Honestly, it was so difficult and also heart wrenching at watching him basically self destruct.

I really hope you have a similar outcome as it's just been life changing if I'm honest; I know that sounds really over the top but it's been unreal.

He is on 30mg medikinet xl and it probably was about week 3 on titration we really noticed the difference.

He attends a private school and they actually callled us in after October half term to say things need to change (they were really good and their sen teacher is wonderful) but I think being such small classes there was only so much they'd been willing to take as it his behaviours were really disrupting the class.

Let me show you some screen shots two mins x

Thank you. We've just enquired about private but with the risk of fees going up by 20% it's just too much ☹️. I'm sure it must be a far better environment. State just feels like you have to fit in, very little adaptation for SEN

So these are just examples from after the October half term of his typical sanctions he'd get. I think I've censored out his name and school for privacy.. I hope so haha.

And just the proof to reassure you he's had none since returning from Easter and only that 1 on his first day back in January!

It really has been unbelievable. And he's incredibly intelligent, so now his grades have also shot up.

To be honest we had a few meetings too regarding the fact he does have adhd and I felt the sanctions were very unfair due to this. But I guess at private schools perhaps there may be a little less tolerable?

I’m so sorry you feel you are rock bottom. I hope you find some answers here OP.
If you don’t mind me asking how did you know he was different? I have that feeling about my 5 year old but my husband thinks it’s in my head

That's just amazing & fabulous proof as to how needed meds can be for some kids! Life must feel so very much better for you now. Does he take the just school days or weekends too? I think we may have to do 7 days to get homework done, so long his appetite not too affected x

Yes, we were told to do 7 days and to never have a break from them actually. He has now and again forgotten in the morning (even after being reminded) but I don't think that's a problem.

Actually I had an email from his teacher the other day asking if he had forgotten to take them, not sure if I said that in my first post? And he had! So they can obviously tell the difference.

I feel your pain OP, DS is currently in the process of being diagnosed with Autism and ADHD, we just about managed on primary, he had the same teacher for a few years which helped. Since starting high school in Sept it’s been a disaster, he’s already been suspended.

no helpful advice but you are not alone. It’s so difficult.

Yes, been there. Meds helped massively but you also have to advocate for your DC. Schools can be pretty hopeless - they really have very little knowledge and understanding - even in the SEN departments. Repeated sanctions will be detrimental to your DC. Read up on Rejection Sensitive Dysphoria and make the school aware how this is affecting your child. Of course there will be times sanctions are appropriate but they need to take your child's disability into account and carefully consider whether a sanction is the most effective consequence (usually not especially with ADHD)

If they're not taking your child's disability into account it could amount to discrimination. Ie my child was sanctioned for a messy and disorganised workbook - I pulled the school up on it, it is literally the definition of his disability. I suggested an appropriate consequence would be to ask him to stay behind and be given help organising said book. This was taken on board and resolved to everyone's satisfaction - a positive outcome but I really do keep on top of what's going on. These are precious years and self esteem is fragile at that age - so easy for them to give up hope but the meds really do help.

DD diagnosed, put on meds and got through school with great gades, no personality change and able to come off now out of uni and has learned how to work with the diagnosis without meds. I don't understand the reluctance for proper use of meds when it can be life changing - its like thyroid meds or diabetes meds, why wouldn't someone use them when its what is needed/what works? Good luck, we had to go through three dose trials to get it just right, they always start at the lowest.

Not sure what meds you're using, ours are fully eliminated from the body every 6-8 hours with no addiction so were also given a short duration tab that works for just 1.5 hours for homework. Not used on weekends as not studying/sitting in class then, just start up on Monday morning and don't use them on holidays or weekends.

DD was diagnosed relatively late- often girls are. She put so much energy into sport and her self esteem crashed the more she struggled in high school. Diagnosis year 9, onto medication. It took a couple of tries to get the right medication and dosage but she's now on Elvanse slow release and it's wonderful for her. She cried after being on it the first week as "is this how easy it is alll the time for other people?" She went from being predicted 3/4 at GCSE to getting all 8/7/6. She's predicted As at A level and has 4 Russel Group university offers. Medication was life changing.

She lost weight. I gave got up early every morning to make a substantial breakfast for her as it impacts her appetite. We also eat later in the evening when it's worn off.

She stays at school often to do work/ homework to maximise when the medication works.

She quite often has a day off over the weekend and multiple days off during holidays - she gains a bit of weight and sleeps. Her psychiatrist is fine with that and she's never had any withdrawal symptoms.

Thank you. At primary it was always low level disruption. Much more difficult to manage emotions than his peers. Easily irritated. Struggled to focus & handwriting awful - still is! Had to use a sledgehammer approach to get him to understand- the only way he'd wear a helmet on his bike was after showing him an image of a kids head injury!! Then he did it straight away after weeks of ignoring 'soft' discussions. Very very strong willed & the least compliant of all his friends. High energy, difficult taking turns. Just blooming hard work!! But funny, sociable, confident, so school thought just high spirited. Lockdown was the turning point - trying to get him to focus on homework was awful! Got through primary ok & came out achieving in everything, but senior school the wheels came off.

It's hard when they are in KS1 as so much is just normal variation. I guess it got more obvious by Y5. Good luck , I hope it all settles for you.

@SOBplus he is on Medikinet XL. We were just told it's better for him so have stuck to the advice of his doctor. We've no issues with him taking it everyday. And he doesn't either as he knows how much he benefits from it!

My ds (10) is going through diagnosis for ADHD. We keep talking with HCP that it's possible he might not have it but he is textbook hyperactive and similar to the behaviour described upthread.

Interested to read these experiences. But it's very worrying.