Please tell me your experiences on medication for ADHD

[Rollergirl11]

Posting here for traffic mainly...

DS (12) was diagnosed with ADHD back in Feb. Medication was discussed but we were still trying to take everything in. Then lockdown/home-schooling happened and DH and I saw first hand just how much he struggles to concentrate and maintain focus. We are now seriously considering medication. I am just a bit worried about the possible loss of appetite as DS is already pretty underweight and cannot afford to lose any more.

Thanks rollergirl - I’ll keep pushing with the NHS then, just so frustrating they are insisting on all the diagnostic forms filling out again before they will see him. Just more time waiting & waiting. After years of trying without medication due to most family members being VERY against the idea. Now I decided to bugger them and try it, I just want to do it straight away. My own fault I guess. Thanks for the input

Well I finally have a telephone appointment tomorrow to ask for the meds so fingers crossed.

How is everyone getting on have you managed to settle down the meds for your children, any successes or nightmare stories - I’m really nervous about it all.

What if he refuses to take them! - I’m on anxiety overdrive I think.

Ds1 was diagnosed age 8 but only started taking medication in July last year, at 12 years old. He started on Equasym but it made him extremely emotional, low, depressed. He's on Medikinet 10mg now and it has really helped his concentration. He doesn't have any loss of appetite or problems falling asleep. He can sometimes get a bit angry but I don't know if that's the meds or hormones as he's 13 now or if it's the ADHD. I would say the benefits far outweigh any cons for him.

Thank you so much for this thread.

Hi,

Thank you for the thread. My son (7 years old) is adhd and pda. I’m sat on a private prescription of Medikinet xl 20mg but yet I haven’t started it .... I can’t face him being any worse than he is ! He’s already super picky and controlling over food and life ! I am only hoping the medicine would improve concentration....

Good luck everyone ! So bloody hard isn’t it !!! Xxx

That’s what I’m worried about too ilovechoc12 especially since my family are all against him having medication so will be just waiting for any little negative thing to jump on. Any side effect will be deemed a failure and ‘you’re just making him worse’ I hope we are lucky and find something that helps quickly but I know things don’t work out that way - plus if its not helping some people stop, some people up the dose, some people change to a diff type of medication so many options.

feels like I’m walking into a minefield but then I’m trying to escape a war so have got no choice but to cross it.

Oh well onwards I guess, maybe all this worry then the Dr won’t even ring - thanks for your replies I hope today is a good day for us all

Hi there, so we are 3 months in to DS taking medication and he’s just been signed over to the GP prescribing his meds as he is now stable. He is taking 35mg of Medikinet and this appears to be working well for him. I can literally see his meds kick in around 30 mins after taking and he becomes very focused and driven. It’s amazing! He had an end of term report back in December and it was superb compared to the last one he had the year before in Year 7. His teachers say that he is far more settled and concentrated and I can finally see that he is gaining confidence and he is taking pride in his work. He definitely does experience lack of appetite during the day but he makes up for it in the evenings and continues to snack after his evening meal. He also doesn’t take the meds on weekends or during school holidays and he eats LOTS at these times so makes up any weight he might have lost. I do keep a close eye on his weight but so far he has managed to maintain his initial weight when we started back in October.

Overall it has been a roaring success and I believe that DS is now able to achieve his full abilities. It has been pretty smooth running for us to be honest. I realise that we have been lucky on this front. But I’m so glad that we tried this and I don’t like to think about the fact that we may have decided not to give it a go and DS would have stayed trapped in a cycle of low self esteem, underachieving at school and never realising his potential.

Thank you so much for your positive story rollergirl11

docs have just prescribed Medikinet 10mg which my son will start on Monday. I hope we have a smooth time just like yourselves.

It must be so lovely for your son and you as a family to be able to breathe again knowing he is on a good path now in his head. I’m so happy for you, gives hope to the rest of us!!

@Gordonbennit yes it is really lovely to see DS so enthusiastic and engaged. I don’t think DH and I realised quite how low his self esteem was. It doesn’t help that he has a very high achieving older sister so he has always felt inadequate compared to her.

DH was initially very resistant to trying medication also. It is important to remember that the medication is in and out of their system very quickly so if there are any adverse affects that are a deal breaker then he can simply stop taking them. This is how I persuaded DH to give it a go. Then hopefully the results will speak for themselves and the benefits outweigh any side effects. Try not to make any rash decisions though. Be prepared for a bit of tinkering to find the optimum dose with the least side effects. They do say that there can be a few minor teething issues when they are getting used to the medication, things like tummy aches, head aches, perhaps experiencing a few mood swings. DS suffered from a few days of agitation early on which I think was rebound when the dose wore off late afternoon but he got over that and hasn’t had it for a while. Hopefully your DS will respond well enough for your family to see the benefits. But ultimately be guided by your son and how he feels. Have the hospital drawn up a plan for increasing the dose?

We went private as NHS were taking too long and couldn't do online. DS2 is on 72 mg xaggatin XL. Lost a lot of weight. Now on high calorie protein shakes to supplement meals. Also has ASD but game changer in terms
of learning and organisation. So still issues but Creates a space for communication so less volatility. GP now taken over prescribing.

His medication will be reviewed in a months time. Fingers crossed all will be well.

He seems to flit from been hyper aggressive to in tears that he’s a bad person and might as well kill himself so anything that calms both ends of his spectrum would be helpful if nothing else.

It’s so nice to think that these meds have worked for some people so hopefully we will find something that suits.

Iv decided not to tell anyone he is having them (his dad does not live with us & only sees him on Saturdays). With lockdown I’m not seeing most of my family anyway, this might be a good thing really they won’t be there to judge and comment, it is more school that I’m trying to calm him for.

I hope it’s ok to reopen this thread - it’s the most helpful one I’ve found for ADHD meds (wish I’d found it last year) and I would love to find out how everyone is getting on and also ask some advice.

DS (13) was diagnosed with ASD and ADHD in November and we have been working our way through the meds. He has tried Concerta and Strattera without much success (and lots of side effects). He’s just started Elvanse. I’m desperately hoping this will help as he is so exhausting and horrible to live with. The biggest issue we have is emotional regulation - he is so up and down throughout the day. He also gets very stressed about certain things. Does anyone else have this? I’m not sure the meds will ever help with the stress and I’m wondering if he needs 24/7 meds to help with the emotional impulsivity (not the stimulants that are just in and out out if his system)?

It would be great to hear any thoughts and also how everyone is getting on - I know there were some PPs who were just about to start meds in January...

@Garythecatsmum I was wondering about your DC’s combination of stimulant / non stimulant meds - would it be ok for me to PM you?

Thanks everyone.

I asked to go on non stimulants 2 days ago but it needs to be a pill swallowed which isn’t going to happen (Intuniv) his anxiety is through the roof pda

The medi xl has helped massively with concentration and being focussed at school.

We have reduced the medicine now (medi xl) as too much crying uncontrollably totally OTT - he couldn’t handle it - today has been wonderful but equally he’s at home not school. We have to take each day separate .....

Fingers crossed but I know my son won’t take a pill ! He’s lucky if he agrees with pink baby calpol if he’s really really poorly 🤪🤪🤪🤪 at least medi xl I can hide it in a yogurt.

Good luck with your journey - it’s feels like gambling at the casino (or that is what it feels like to me) soon as you have the perfect number everything is wonderful. Good luck !!! X

Thanks for the update @Ilovechoc12, I know what you mean - it feels like I’m just endlessly waiting with my fingers crossed for us to find the winning combination. It sounds like you’ve had some ups and downs with the Medi XL, some children seem to really struggle with the stimulant side effects don’t they. Such a shame your DS won’t take a pill for the Intuniv (could he swallow it whole in a spoonful of yoghurt?) Thanks for your message and enjoy the rest of your calm day! X