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!

[peapod66]

Hi I would find such a thread very useful, but don't yet have much to contribute I'm afraid. Ds (12) has ADHD/ASD/OCD, but has been unwilling to try medication since diagnosis a year ago, primarily as it is a specific trigger for one aspect of the OCD.

We have progressed dietary changes/supplements, sensory/fiddle toys and support in school where viable, but are keen to find out about the practical experience of medications, as we can foresee a time when we might need to bring this back to the fore.

[Waitingforsleep]

Great hopefully others will be along too.
I will post how we get on but it has to be said it seems to be a very complicated area and whilst one medication works for one child it's not the same for another.

We have decided the problems with insomnia and loss of appitite were a problem for the elvanse and the dr took us off Medikinet after dd kept getting really angry although it worked wonders for two weeks so I'm still a bit upset we had to stop..

[Allthewaves]

Hi
Prob all seen me about. Iv 9yr old who has adhd - combined. Good results from Equasym, nearly maxed out dose now so might have to change. Took month drug holiday and seems.to have massively reduced his tolerance which is great. Still ongoing battles with keeping weight up

[peapod66]

It's interesting to hear that for the dcs of both of you there has been the impact on appetite/weight, as it is listed as a possible side effect of the medication ds was prescribed (and alternatives), but not presented as a 'given'. That will be a consideration as well, as ds is only just about 9th centile for weight and height as it is and is quite self-conscious about it - it's not necessarily straightforward is it?....

[Waitingforsleep]

It is not straightforward at all as each child is different. Dd can't afford to lose weight as she is tiny!
What I would say though is that it is worth trying this route. We have tried two so far which haven't been successful but at least I know and it hasn't caused any harm. I have tried both though in holidays to start with though so that I would be home if dd didn't feel great so maybe Feb half term could be a good time?
The stimulant ones are quick acting. Which one are you prescribed?

[peapod66]

Hi, it's Methylphenidate that he's been prescribed. We remain open to trying it and initially got as far as practising swallowing tablets (tic tacs!) whole and had a schedule to start it in the holidays. However in spite of 'selling' the transient nature of the effects we tried many times and then backed off as it precipitated meltdowns and caused massive anxiety in ds. We have agreed with him to keep it on the back burner as he has now changed to a secondary school which is a much better fit for him. He seems to be coping well so far but some aspects of school remain a challenge for him and this may become more acute as work volumes/complexity increase - we will see!

[Waitingforsleep]

So it's the actual taking of the medicine that's a problem? That would be a tough one as my dd and I talk it all through plus it's vital to communicate about the effects i.e. She tells me if she has a headache etc

[peapod66]

Hi yes fundamentally that's it. Without derailing the thread with detail I think we had underestimated the strength of his 'phobia' about taking the meds for want of a better word and from experience with ds think it would need CBT or similar to overcome it.

[peapod66]

Ps. It's great that you are able to sit and talk everything through with your dd in detail as it's then very much a collaborative thing

[Waitingforsleep]

You are not de railing that's what I would
Like this for so people can chat and help with medication advise. I understand, that's hard! Yes we are trying to work together to find the best meds, she got very angry on the Medikinet which we discussed and elvanse hated not sleeping and eating.
She is happily trying the strattera today so will keep updated with the questions and progress we have.
I'm still very worried about it all but if this med helps it could be amazing for us all.

[peapod66]

Yes fully understand about the worry as I felt/feel like that too, yet there's the potential for medication to make such a difference and you are starting find out what works for your dd. Best of luck with the Strattera, and I hope for you that it proves to be the one that will make the difference without the extent of side effects.

[peapod66]

Hi waiting. I wondered how it's going with the Strattera? Is that one of the meds which takes a little while to build up before it becomes effective?

[Waitingforsleep]

Yes it is, we are on week 1 of the 10mg before we go to 18mg.
Nothing to report but no side effects either so that’s good.
I’m now worrying that I didn’t give the Medikinet long enough as that one so far was the most in terms of effect. It’s so hard to know what to do!!

[peapod66]

That's great that there have been no side effects and maybe the positives will be more subtle as the dose increases.
I can understand the wondering about the Medikinet as you saw the potential benefits, but the anger episodes must have been difficult and also worrying longer term. If they subsided when the Medikinet was stopped then you probably have the answer, but it must be frustrating.
At least you will know you have really tried, which is definitely more than we can say, although as I mentioned a change of school has really helped ds for the foreseeable at least.

[Waitingforsleep]

It’s tricky as dd does have problems with anger and does hit us and scream at us :(
However you have made me think and the reason we took her off as the agression went to ten times worse for a few days where she threw things at us and swore etc very angry! That level of agression stopped although we still have the same old normal hitting and shouting
Glad the school helping!x

[Sashton]

Pleased to see a thread on this! Our DD used Medikinet XL with top up of Medikinet. It worked for us but was sporadic during the day needing top ups at school - which they kept forgetting to give her - also she developed a massively annoying (every 1 to 2 seconds) throat clearing tic - that drove us mad. We changed to Concerta - but she couldn't swallow the tablets, so we've now changed to Elvanse - which is OK, longer lasting meaning we don't need a top up in the middle of the day, but we do need a short release top up at the end of the day for clubs and homework. We are just waiting for that prescription now, but our specialist unit has closed down and we are waiting to be assigned to a new one.

Lack of sleep and appetite are both an issue - but we've had some success with lavender oil drops and a lavender pillow spray that do seem to help her get to sleep quicker. Masses of nutella and peanut butter have managed to combat too much weight loss.

Has anyone tried Guanfacine? I was just reading about it in 'Straight Talk about Medications for Kids' by Timothy Wilens - but I don't see it mentioned in the NHS Nice Guidelines for ADHD medicines.
www.nice.org.uk/guidance/ta98/chapter/4-Evidence-and-interpretation
This link is useful reading however as it discusses and compares the different medications available in the UK for ADHD.

[Waitingforsleep]

Glad you have posted as I was going to re post hoping people would join in!
Will post more later, we are going up to the last dose of our straterra trial tomorrow and then have to monitor for the month.
So far much better in terms of side effects however would t say much difference in dd!

[Waitingforsleep]

We gave to give dd melatonin for sleep but we have done since before dx. The elvanse really kept dd wired so couldn’t carry on plus the lack of appetite was a worry !

[Lesley25]

We’ve been in Medikinet xl for 3 years- ds is 9 asd and add.
He cannot tell us how these meds make him feel even thought he’s at the 1-2 word stage.
I’ve always been concerned with aggression but never sure if it’s frustration or mess.
We know Medikinet xl works - we’ve triwalled various doses every year and he has weekends and has holiday breaks.
Only given during school time.
Now we are having a week off as a baseline.
Behaviour today at school very aggressive and hitting out- basically nothing to do with the Medikinet!
Next week we trial 2.5ml of strattera liquid form, then 4.5ml for 21 days.
I’ll report back!

[Lesley25]

Does anyone know if non stimulant medication is more effective then stimulants? I may start a thread on it

[Waitingforsleep]

Hi,
I will reply later but please keep chatting In this thread as it would be great for people to chat about experiences with meds.
We have gone from Medikinet to elvanse to straterra. Will be back!

[Waitingforsleep]

Can I ask was ds agressive before the meds? Or is this since taking them? How
Long as he been off Medikinet?
We are week 2 if max dose straterra after 2 weeks of tirating the dose. Nothing really great to report however the lack of side effects has been good.
I have read it can take 4-6- 8 weeks to see anything? I’m seriously hoping something happens soon as it feels like another one that hasn’t been right!

[Lesley25]

Ds has been on meds just during school time since he was 6 years 3 months. He wasn’t aggressive then but he was a lot younger, so I can’t compare the 2. When he was medicated initially I didn’t like the effect, but I wasn’t used to a calmer more subdued boy and at that point he was non verbal so I went off schools opinion who every year sang the praises of Medikinet. The aggression has been in the last year so I guess looking back it can’t be the meds making him aggressive as that would’ve been evident from the start.
What I do know is that the zombie effect when I tried it on the weekend I didn’t like so we only used it for school right from the beginning.
Fast forward 3 years - we have trialled increases in doses and afternoon doses throughout the last 3 years, but ds recently started spitting the afternoon dose out. We can open these capsules and disguise in food but ds started to get aggressive with taking the afternoon dose at school after previously taking it for 18 months.
Red flag for me and school so we dropped afternoon dose- school felt it hadn’t worked as well as morning (disguised at home) and I didn’t like the fact it would keep ds up later- he couldn’t switch off.
We are now Med free this week as a baseline and I’m honestly thinking Medikinet isnt to blame for aggression so why trial strattera when we know Medikinet has worked?
Yep we get aggression due to frustration with speech but is strattera going to be any better?

[Lesley25]

I should say I can only trial capsules and liquid you can open and we tried concerts xl and I didn’t notice much difference but they really suppressed appetite so we went back to Medikinet xl 10mg.
Our only other option pointed out by camhs is liquid strattera.

[Lesley25]

Waiting- my ds is the same, he hits and screams at us, it’s the increase in this which is harder to measure but more then the usual which we’ve used as a barometer.
Saying that, if I had trialled a new medtoday I would’ve thought absolutely no with the aggression displayed at home and school but I think ds has s tummy ache.
These decisions are ten times more difficult when ds cannot tell me if something’s bothering him so having to make decision about meds is s very long process. We do a retrial every sept and increase/decrease the dose after summer holidays to make sure nothing needs altering, so that’s why I know Medikinet xl has worked.