ADHD medication thread

[Waitingforsleep]

I wondered if I could start a thread on ADHD medication?
I did post about Medikinet and it's all moved on since then I have new questions and updates that others may fine useful?
I will put the info in tomorrow but in brief-
Started Medikinet - was ok but then after 2 weeks dd seemed really explosive and angry a lot and it got worse so we had to take her off
Started on Elvanse but that was an odd one as it had an affect for 2 days (was a bit too
Much the first day as dd slept only for one hour and was so focussed she re arranged her whole bedroom the whole night) then didn't seem any difference so we have been told dd is probably one of the few who cannot tolerate stimulants so now going into strattera which we will try next week..

Anyone else share their stories as it's all so complicated!

[FanFckingTastic]

Hi @Gentlygently. Lots of questions - I'll try and give you my take on it and I'm sure others will add their advice in too.

Does all medication have to be taken continuously? - It depends on the medication I think. With the stimulant meds we could be a little bit more flexible. So for example my little boy would take medication 'holidays' over the weekend or sometimes when he was off school and not needing to be sitting still, concentrating or in stressful situations. We did this more to help with his weight too as he's very thin. As I understand it you can't do this so much with the non-stimulant meds as these build in the system slowly.

If your children take the medication, were you reluctant to put them on it? Are you trying to 'wean' them off? Or do you wish you had used it sooner? I was reluctant to give medication to my little one and I'm pretty sure I'm not alone in feeling this way - no one takes the decision to medicate lightly. We decided to medicate our son as his ADHD had got so bad that he was a danger to himself sometimes, and his self esteem was terrible. His peer relationships were suffering just as much as his education and life at home with his siblings was just awful too as he was so volatile. I think that the defining moment for me was him in floods of tears asking me to help him calm down, because he couldn't do it himself 'why am I like this mummy, please help me'. We decided to medicate alongside other therapies e.g counselling sessions to help with his anxiety. The way that I looked at it was that if he had any other physical medical condition - asthma, diabetes etc etc I would have no qualms with giving him medication to make his quality of life better. Mental health should be no different.

The medication is not perfect by any stretch but it does seem to give him a little bit of respite from his symptoms and allows him to participate fully at school and interact better with others. He is much happier in himself which is the best thing for me.

[Allthewaves]

Gently

DS has issues with concentration, impulsivity, and general non-stop talking loudly and demanding attention

This is my ds he's 9. Med's have changed his life. His behaviour doesn't bother him but makes him very hard work. Since starting meds ds has gone to the top of his class. On his meds he's much less rude and cheeky and generally more pleasant. We give ds a smaller dose at weekends as he needs less control than during the week. We.used to.have med free weekends but everyone was just miserable. Him for getting shouted at so much and us trying to.control his behaviour

[Gentlygently]

Thank you so much. Discussed with paed and they are going to request more info from school and get back to me. DS’s behaviour is just so normal to me I sometimes forget it is extreme. When I said I had never seen him sit down at the table at home and concentrate for longer than 5 minutes it struck me my much younger one can do that easily :(.

[Sirzy]

Hoping some of the experts on here can help me, I want some ideas what to ask for or consider. Ds is 8

I have an appointment with the pead on Monday at which we are going to discuss medication because we have tried everything else (I think?) and something needs to be changed. However I am led to believe that weight loss is a common side effect of the drugs? This could be disastrous for us as ds is already under weight and at the point we have an eating disorders team appointment next week. He is also anxious to the point that we are on the verge of trying anti anxiety medication (which I am keen to avoid if at all possible!)

Are there any medications (specific names or groups of) which are less likely to cause weight loss issues?

[Sirzy]

Thank you waiting this is a whole new arm to the ongoing learning curve! Glad I found this thread

[Sirzy]

Ds is 10 days into Strattera. Given we were told it would take time to see a change ds does seem more relaxed so hopefully that’s a good sign. Just increased the dose with another increase next week to his maximum for now

[FanFckingTastic]

Hi everyone :-) So an update from us - we are now on week 7/8 of Strattera. We've had to play around with the dosage level (as DS has a super-high metabolism and seems to burn through meds very fast) but we now seem to be in quite a good place. If I'm honest the Strattera doesn't seem to give DS as much help with concentrating but it definitely helps take the edge off the hyperactivity and his anxiety has really improved. Best of all we've had no real side effects! He's eating like a horse, sleeping well and seems really happy so whilst I don't think that this med is perfect, it certainly seems like it's helping. Hope that everyone else is doing ok too. Looking forward to the summer holidays now! X

[Sirzy]

we are on about week 7 of strattera and really starting to see a difference now, anxiety wise it certainly seems to be taking the edge off

[FanFckingTastic]

@waitingforsleepagain - my DS is now on 40mg which is the highest dose that he's allowed.

[64BooLane]

Joining in. DS (10) has ADHD and dyspraxia but not ASD. He is on 20mg of Equasym XL, recently increased after about a week on 10mg, and ... we’re not sure if it’s helping. Which worries me, as everyone says that it will quickly become obvious whether it’s helping or not. I feel like my observations of him must be weirdly muddled or unsystematic, if I can’t tell.

His sleep has always been poor (early waking and a real compulsion to wake others - this is a long-standing issue for our family). The CAHMS doctor who prescribed it insists that Equasym taken first thing should not affect his sleep, as it wears off and out of the system before bedtime, “like a painkiller”; but I see so much anecdotal evidence online about the drug interfering with sleep. I can’t reconcile this contradiction.

His appetite seems mostly unaffected so far. Maybe a little bit suppressed - but I half think that’s perhaps just him wanting to show us the drug is working, iyswim. He normally eats more than average for his age/size, and I think he’s eating roughly an average amount now.

He is normally dreamy, sweet, periodically irritable and tearful and angry ... quite mood-swing-ish (particularly after gaming or screen time) and on the meds all of that still seems to hold true. Maybe a little less? I just don’t know. It was never a totally consistent thing from one day to the next and tbh, it still isn’t.

Just don’t know what to do. I long to sort his sleep out, as I think that would help us to see things more clearly, and I wondered about asking for melatonin. Would I normally ask the GP about that - making a separate appointment - or the CAHMS doctor (who we’re seeing again in a fortnight)?

[TheThirdOfHerName]

Sorry to join so late.
DS2 has been taking Concerta XL since 2009. He is on 27mg, which works fine for him.

On the advice of the paediatrician, he takes an annual medication break in the school summer holidays. The difference when he is off his medication was very noticeable for the first few years, but this summer he is functioning OK without it (at home; we haven't tried a break during term-time).

How do you decide when to stop it?

[64BooLane]

Sorry to ramble on, but - I’m also curious as to why we might have been offered Equasym initially, as opposed to other brands or alternatives I’ve seen mentioned on this thread. Alternative options weren’t even discussed with us at CAMHS, but it feels like many people on here are getting different versions of the drug (Medikinet?), or at least getting the opportunity to discuss the options.

I’m not assuming Equasym is wrong for us, but I’m wondering whether the doctor dealing with us could perhaps be a little more forthcoming about DS’s treatment options. Should I be asking more probing questions?

(We’re in Scotland, fwiw)