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!

[Waitingforsleep]

Sorry if I’m confused but you say your ds has been on it for 3 years?
Have you been advised to take him off?

Our trials have been so quick!

[Lesley25]

3 years ago the options were limited- there wasn’t the liquid strattera there is now and my ds could only take the the capsules smuggled into something so they had to be opened. We tried the different brands of Medikinet xl and concerta and settled on Medikinet. At the time I wanted something that was in and out of his system as I felt he was quite subdued but it was good for school and concentration.
We only ever medicated during school times but our ds has autism also and was largely non verbal so we also felt that the subdued’ness wasn’t a great thing where he was learning alot at home with language.
Now we are looking at aggression overall and how this has grown over the last year we are looking at everything inc Medikinet- hence the trial with strattera next week

[Waitingforsleep]

I see, well we trialled the Medikinet and dd had a period of 4 days of worse anger than I have ever seen (around 2 weeks in) she does get angry and agressive so it’s hard to tell but this was different and she was more out of control. The dr took her off and said it does this with some children.
We tried elvanse but after two days it was as though she had never had it. Also she couldn’t sleep or eat. So we are now onto straterra. We haven’t had the anger issues although she still has had her usual outbursts if that makes sense. I think she is a little calmer but we are only week 4 and I have read it takes at least 6 weeks but I can update too.
It’s so hard isn’t it but try it and let me know how you are getting on. I think for dd this one suits better as no side effects really although as I say not many benefits yet either!

[Whoopsiveovershared]

Hi, joining in to bump this thread and get some support. My DS started his Meds on Saturday. Half dose for a week then upping to 10mg teya day. Not seen any changes in him yet, but perhaps that's cos it's only half a dose.

[Waitingforsleep]

What med is this?

[Waitingforsleep]

And welcome!

[Allthewaves]

Hi. Just popping back. Ds (9) is doing great after a 3 week med break from Equasym xl - much more effective but his bedtimes are going back a bit. He was weirdly always a super sleeping - very unusal for adhd I know.

Went to a nhs adhd talk. Very interesting. Lots of good stuff about OT using to calm behaviours - will post later.

As far as my trust is concerned non stims meds are second line treatment because not as much is known about them
Atomoxetine (Strattera)- has been lined with suicudal thoughts
Guanfacine ER (Intuniv) - needs weekly blood pressure monitoring so it's harder to administer. Hope got it then right way round

[Lesley25]

If I’m honest after this week I may hold off from straterra. Only because if the aggression is there with my ds beforehand I can’t really say the meds make it worse. Also I like the fact it’s in and out of their system and I can have breaks. You can’t do that with strattera and also ds has a good appetite and a good sleeper even with Medikinet.
If I don’t think it causes the aggression why should I trial another Med? I’m weighing it all up, but my dc is complex and cannot tell me how meds make him feel.

[Whoopsiveovershared]

It's methyl something. Doesn't see to have a brand name.

[Lesley25]

Methylphenidate- hmmm, what nthink that’s Medikinet xl but I’m not sure

[FanFckingTastic]

Hi All! I'm interested in what your little ones have tried after Methylphenidate and Lisdexamphetamin. My DS tried Medikinet but quickly metabolised it and had quite bad rebound so it was a no-go. He is on Elvanse at the moment but at 60mg he's about to top out and to be honest I'm not sure I want to move him to the maximum dose as he's painfully thin and we really struggle with sleep. Elvanse does not seem to not be doing a great deal for him anymore - he can't feel the effects after about 2pm despite it supposedly being a 12 hour dose. Does anyone have any views on the non-stims? Or any other medication? I've heard that Dyanavel is having good results but not sure whether this is only available in the US.

[Lesley25]

Quick update, after a horrendous day again at school we have (school ht, camhs and myself) decided to go back onto Medikinet as it’s clear there’s no/v little correlation between aggression and the medication. I dont see the point of starting strattera either and going through the pain of will/it won’t it work and side effects but tbh my child is on the severe end of the autism spectrum so it’s very hard for me to ascertain how medication is with him. It’s a long drawn out Sherlock style experiment, and quite frankly I’m not putting us and him through it.
What advice I can give is that it’s easy to blame a medication side effects as a reason to stop it- but I think it needs a long process especially if your child has complex needs as Mine does and cannot tell you how they make him feel. I’ve been quick to blame Medikinet every year and we do various doseage check trials every year to make sure this is the right dose, I think that’s important too.

[Waitingforsleep]

Glad you have reached a decision and you can always keep a log anyway to see how it goes!

Fan- what do you mean by quickly metabolised it?

[Waitingforsleep]

So frustrating all this- does anyone have any good news re straterra?

[FanFckingTastic]

Sorry for the slow update! Saw the consultant yesterday and she's concerned about my little boy's weight as he's literally at the bottom of the chart on the 0 centile :-( No more Elvanse for him as the high dosage is possibly contributing to his weight loss and anxiety. We are now going to trial Concerta XL. Anyone have kids taking this and have any feedback? Hoping that the move is positive as we didn't do so well on Medikinet but the Consultant wants to trial the Stim meds first before trialling non-Stims.

Waiting - my boy has a super-fast metabolism and burns through medication very quickly. His body gets used to it in a very short space of time and it doesn't tend to last very long :-(

[Waitingforsleep]

That’s ok!
The dr said that about my dd as she had elvanse which had such a massive effect for 2-3 days and then as if there was nothing. I didn’t really understand what she said but said was metabolising it so took her off it.
Still on straterra and no joy so feeling a bit down. Hoping the dr will be in touch soon as I don’t know what to do!
What’s the difference with concerta? We went from Medikinet to elvanse to straterra so that one wasn’t mentioned..
Thanks it’s good to talk about this!

[Waitingforsleep]

So we are being advised to go up to 50mg for two weeks- no difference then onto the next! That will be the fourth one tried!!

[Pomegranatemolasses]

Have any of you thought about combining a stimulant and non-stimulant? DS was on Concerta for about 18 months, but we had to take him off it as he'd lost so much weight. It also wasn't particularly efffective.

After much research by us, we decided to try him on a combo of Elvanse and Intuniv (Guanfacine). This has been our most successful decision to date. He takes both during school days (the Intuniv seems to counteract some of the irritability caused by the stimulant), and Intuniv on its own at weekends and holidays. Intuniv contributes to weight gain, thankfully! Also, it is not necessary to have weekly bp checks, as was stated above.

We found we had to become the experts - the medics had hardly heard of Intuniv or combining stimulants and non-stimulants, though it's commonplace in the States.

Look up some of Russell Barkley's work on Youtube - he's excellent.

[Pomegranatemolasses]

@Waitingforsleep: Medikinet and Concerta are the same, both methylphenidate. Concerta is just a longer lasting formulation. See what you think of what I posted above, re drug combining.

[Waitingforsleep]

Thank you, it’s interesting you say this as I had read a little on this and wondered if this would be tried next with dd. I can certainly ask about it. Do you just have a lower dose of the stimulant? Not sure how it all work..

[Pomegranatemolasses]

DS is on 50mg of Elvanse and 3mg of Intuniv on school days, and 4mg of Intuniv alone at weekends and holidays. It's not ideal to be stopping and starting the Elvanse, as there are a few issues with rebound, but nothing too dramatic.

Intuniv seems to take the edge off the anger and anxiety. We feel DS is most 'himself' during holiday times, when he's on Intuniv alone. He definitely needs the Elvanse for school times though.

[Waitingforsleep]

Thank you, what’s intuniv? I’m not having a good day today and ended up in tears again.
I have a ds with very similar problems so if you can imagine how hard with two :(
Desperate for the right medication!

[Allthewaves]

I should clarify that weekly checks are required while only while getting correct dosage of Guanfacine which is why my trust use it as last line med.

[Pomegranatemolasses]

Thank you Allthewaves - seems a shame that this is holding back the prescribing of this drug. For us, it has been a game changer.

Waitingforsleep, Intuniv is the brand name for guanfacine. It is a non stimulant, but works in a completely different way to Strattera. On its own it works well to reduce aggression and anxiety, as well as some of the hyperactivity. It is not as effective as a stimulant for focus on school work.

[FanFckingTastic]

Pomegranate - that's really interesting to hear. Our consultant has suggested that a combination may well be our next step but she wants to trial all the stimulant meds first. We've had a few days of Concerta and so far it seems to be quite positive. He's a actually hungry which is a huge bonus but does seem a little tearful / sensitive. I'm going to be interested in what feedback his teacher gives us, as I'm most concerned with him being able to concentrate at school. Thanks for all info and experiences guys, it's really helpful :-)