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ADHD medication thread

198 replies

Waitingforsleep · 09/01/2018 22:25

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!

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rosalux · 19/02/2018 14:11

Can I ask Pomegranate what age your DS is and what profile he has? DS1 is 6.5yrs and recently dx ASD though paed agrees also ADHD (we did Conners). Concerta xl has been suggested and like another poster, the paed wants to trial all stimulant meds before considering anything else. The reason given for this is that these meds have a much longer history and so more is known about them. I would also be interested to know what specific issues you had with Concerta and how you knew it wasn't working. Did nothing change or did things get worse, or was it mainly the weight issue? Did you try different dosages and/or fast acting meds like ritalin? I really want to know how many hoops I can expect to have to jump through and when to stop trying one med and start another etc. As you know, it seems to be completely trial and error.

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Waitingforsleep · 19/02/2018 19:49

Why do you think our pead just tried two stimulants before going non stimulant?
The best one for us In terms of effect was Medikinet although I did feel dd was a little bit robotic which concerned me. We also had more difficulty with eating and sleeping and then finally after a great two weeks she had awful outbursts and anger throwing things swearing etc which made the pead take her off concluding she had a delayed reaction to the meds. Admittedly since taking her off she hasn’t had this anger level since. Just wondering f as there are more stims why we haven’t tried more if they are the same?

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Pomegranatemolasses · 19/02/2018 22:27

Hi rosalux, DS was diagnosed with ADHD (and ODD) when he was 11, he has now just turned 15. I feel the ODD is totally linked to the ADHD - when that is being treated successfully, the ODD really dissipates.

He was initially put on Concerta, 36mg, which actually worked well for about 2 years. It became less effective as he got older and moved to secondary school. We moved him up to 54mg, but the behavioural improvement was minimal. His weight was a big concern, and his behaviour in school was disimproving, so last summer we did a lot of research around drug combining/non stimulants etc.

Intuniv caught my eye initially as it is linked to weight gain, and we wanted to try a different stimulant as Concerta wasn't working. Our consultant hadn't even heard of Intuniv, so we had to arrive to appointments armed with research on clinical trials etc. Anyway, he started Intuniv last July and we had the best summer we have had in years. He takes Elvanse for school, which does make him more irritable and kills his appetite, but at least we know we will have Intuniv for the down times.

DS is still lively and 'bouncy' on Intuniv, and still prone to, as he says himself his random outbursts, but the anger and oppositional behaviour isn't there any more (generally speaking! - he is after all a typical teenager also).

Waitingforsleep, I suppose your DD has trialed the two most common stimulants, so maybe that is why your paed has gone for non stimulant?

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Waitingforsleep · 20/02/2018 06:36

Thanks I have no idea what will be suggested next but straterra isn’t working and I’m at the end of my tether this am feel really rubbish! The fact that both of my children suffer with sleep problems isn’t helping so am major grumpy this am after a disturbed night again and been up since 4.30 followed by both kids melting down over frustration on the x box!
I can’t tell you how much I need something to work

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Waitingforsleep · 20/02/2018 06:37

I’m wondering whether to ask to re try Medikinet again

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Pomegranatemolasses · 20/02/2018 08:58

Yes, worth experimenting is always the advice I was given. Have you asked about melatonin for sleep? Ds takes Circadin (slow release melatonin). Sounds like your children could really benefit from it.

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Waitingforsleep · 20/02/2018 09:38

Yes although we have only just been given the slow release one, I was a little worried as it says do not give to children but it seems it is fine and we need sleep! Does it keep yours asleep then? The liquid one gets mine to sleep but doesn’t keep them that way..

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Pomegranatemolasses · 20/02/2018 12:43

Yes we use slow release and it generally works well to keep him asleep

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bigmouthstrikesagain · 20/02/2018 20:08

Hello my daughter has recently being diagnosed with ADD. She already has a diagnosis of high functioning ASD. The paediatrician has started her on a low dose of ritalin. 10mg in morning and 10mg at lunchtime. Dd has not shown any side affects and claims to feel more productive and focused in class.

We were concerned initially as dd is a well behaved student but she has struggled for years feeling out of sync with her class mates and losing track of instructions/ easily distracted. She feels the meds are helping so we are pleased with the impact so far.

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Waitingforsleep · 20/02/2018 20:24

So glad they are helping! Mine certainly are not so will go back to the dr this week I think.
Given dd the slow release melatonin tonight so hoping for sleep!!!

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Waitingforsleep · 21/02/2018 08:10

She slept through!!! Horray! That’s one thing at least Grin

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Pomegranatemolasses · 21/02/2018 16:40

Delighted to hear that Waitingforsleep - maybe you will have to change your user name! Grin

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Waitingforsleep · 21/02/2018 19:59

Since I’m currently trying to settle ds who doesn’t sleep either I will stick with the name Wink

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Waitingforsleep · 25/02/2018 20:54

Well a week into the next dose of straterra and I’m worrying this is too good to be true and waiting for it to be.. I have to say dd has been amazing these past few days, coping with things so much better. I’m thinking is this it? Is this what is supposed to be happening? It’s hard to know what I should be looking for but dd has been less manic and the main thing been more compliant although not all the time a heck of a lot! Touching wood we won’t have to try a 4th but unsure if just a good few days?!

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Waitingforsleep · 04/03/2018 11:03

Well still brilliant results with straterra but one rather annoying stumbling block!! Dd keeps getting tummy ache after she had taken the meds. We have taken them as advised after breakfast but this hasn’t helped.
I have read they can split the dose so one in the morning and one later afternoon but I will have to await the dr to see.
Hoping they can’t sort it all as I feel they make take her off them :(

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rosalux · 07/03/2018 08:09

Pomegranate could I ask you to point me in the direction of the literature you took to your consultant to persuade them to trial different meds. We've done a week of Medikinet xl 20mg, but DS1 has been excluded twice in two days for hitting the teacher and has generally been really awful at home too. I would like to start again on a much lower dose and then if no improvement try concerta xl or short acting meds or non-stimulants, but our Paed seems to think that if one doesn't work none of them will and I need to convince him otherwise!

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Waitingforsleep · 11/03/2018 20:36

So the split dose hasn’t stopped the tummy ache.. looks like we have to move to Intuniv.
Can someone let me know about this? Is it a build up again?
I feel so upset. The dose of the straterra was perfect and we had great results with dd eventually but I can let her have tummy ache after she takes it every time it’s not fair in her :(

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Allthewaves · 11/03/2018 21:10

Could the stomach aches ease with time? I know stims are different but ds had stomach aches for the first month then they just stopped

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Waitingforsleep · 11/03/2018 22:28

I don’t know how long to give it, feel guilty for her having them :(
Did ds have them for a while
Month then? Dd seems to have them within an hour of taking the meds then either I give calpol or this eases off. She said she had it tonight so I gave her a wheat bag and she was asleep within 5mins..
It’s so hard! :(

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Pomegranatemolasses · 13/03/2018 20:26

@rosalux: sorry just saw this now. Here is link:

www.sciencedaily.com/releases/2016/08/160801093232.htm
Sorry, I don't know why it hasn't linked properly, but if you copy and paste into search bar, it will give you the study.

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Pomegranatemolasses · 13/03/2018 20:26

ooh, it did work!

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Pomegranatemolasses · 13/03/2018 20:31

@Waitingforsleep, are you sure pains are caused by Strattera? They can be an anxiety symptom, as am sure you know. I would persevere before abandoning Strattera.

Intuniv is not without side effects, including extreme lethargy, especially for the first days/weeks (it did wear off quite quickly for DS). Also it's not particularly effective on its own for school days, where more focus is needed. Then it should be paired with a stimulant.

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Waitingforsleep · 13/03/2018 22:26

It’s definitely caused by it :(
I have monitored and not mentioned it and she comes and tells me I have stomach ache and can see she is in pain so has calpol etc.
I want to keep with it as her anger levels have gone down so much it makes life easier but it doesn’t seem fair plus I’m worried it’s damaging her in some way?!

I must say it hasn’t really worked for focus so I’m wondering if something else is needed too..

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Pomegranatemolasses · 13/03/2018 22:45

That's a shame - well Intuniv has definitely eliminated a huge amount of the anger and oppositional behaviour from DS, and when we give him Elvanse alongside it for school, it definitely improves focus.

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Waitingforsleep · 14/03/2018 06:58

Does Intuniv have to build up too? Just feel we will never find the one to suit :(
Keep getting great results but too many side effects

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