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JoanJett

Anyone with experience with Vyvanse and Intuniv?

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JoanJett

So, long story short (although not so short looking at the length of my post), we ie my almost 11 year old boy, swapped from a Concerta/Ritalin combo to Vyvanse in April this year due to a combination of plummeting weight, less than optimal management of Ritalin top ups at school and concerns about the emotional blunting on increased stimulants. Vyvanse has been good, but bad. The good is he's more himself, the bad is that means that when it's good, it's good, when it's not, it's volcanic eruptions and meltdowns and re-emergence of social problems. It's been hard to know what is due to his underlying ADHD, what is due to the medication and what is being a tween boy with hormone changes and increased social demands.

 

So now, we are starting Intuniv as an adjunct in the hope that it helps with weight, helps with the morning unfiltered ADHD rollercoaster, helps with the evening wear off tsunami and hopefully some of the impulsive symptoms. There's a hope that it will perhaps allow us to dial back the stimulants, as there is some concern that that some of the aggression is potentiated by them.

 

Just wondering how anyone who has been on this combo has found it? Specifically, how significant was the sedation/somnolence starting the Intuniv, how long til you really saw some effect (if any) and what have been the pros and cons?

 

Thanks.

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Tbird24

My son is on those meds. He’s 11. Intuniv worked when he got to the 4mg dose. It makes the mornings heaps heaps better and overall mellowed him out a bit. He takes the Intuniv at night time and hasn’t had any issues with sleepiness during the day. We can tell when the vyvanse wears off in the afternoon but it’s managable.

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JoanJett

Thanks Tbird24.

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Navy Blue

My DS is on intuniv and risperidone.

 

Tbh I didn't really notice any effect on the 1mg intuniv. Now he's on 2mg and his focus has definitely improved. He is pretty tired atm but I'm hoping that evens out soon. It has calmed him down but he complains of no energy for sport etc so it's a bit of a trade off, for now at least.

 

He takes it in the morning.

 

Oh, to add he was very tired the first few days on 1mg, then came good pretty quick. The focus improved after a couple of weeks on 2mg.

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JoanJett

Thanks Navy Blue.

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IamzFeralz

My DS is on those meds too. He is of the very impulsive aggressive subtype of ADHD and ASD. It’ helps a lot with the aggression but he is still quite impulsive in a silly way.

 

We haven’t had any issues at school this year so that is great.

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ali-song

We had a similar experience with Vyvanse, such that DS didn’t stay on it for more than a couple of months. From memory, he was a similar age to your DS at the time. There was one epic meltdown related to a lack of sour cream that really sealed the deal. At the time DS only had an ADHD diagnosis; ASD has been added since then.

 

We went back to Concerta and just dealt with the side effects - a very good thermos and hot lunches have helped with weight. Since then we’ve added Lovan - which was a subtle improvement - and about a year ago, Intuniv. DS is now up to 7 mg, taken at night. He isn’t generally too tired, but his sleep does get disrupted if he forgets a dose or when doses were changed. For us, this has been a great combo of meds - there have been no behavioral concerns at school this year, and he’s generally just been much more pleasant to be around.

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JoanJett

Thanks IamzFeralz and ali-song. It's useful to hear others' experiences.

 

So far (after a few doses only at the starting dose), the upsides have been easier transition to sleep and more appetite through the day. Luckily no noticeable sedation. It's too early to say much more than that. Here's hoping we see more ADHD specific benefits as the dose is escalated.

 

Thanks everyone for replying.

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QuirkyMum

Due to losing weight on Concerta and needing a higher dose, doctor changed his meds to same dose of Concerta + Intuniv 2 mg.

Intuniv only caused sleepiness and made him placid/more compliant for 3 weeks ( first week was on 1 mg so first two weeks on new 2 mg dose). After that it no longer helps with sleep, unfortunately. But it definitely helps with mornings ( still gets silly but easier to handle) and evenings. Our evenings are definitely better if Intuniv is given with dinner ( at 5:30-6:30 pm). If we forget or eat late, then things escalate. I know Intuniv sort of needs to build up in the system and missed dose shouldn't be as obvious as a missed ritalin tablet ( haha as if this can be missed!) but our experience has been different to this...

Anyway, good luck with this combo.I hope it works for your family. You should see Intuniv in action after a few weeks...

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JoanJett

Just stopping by to update, for my own reflection but also knowing that I've found threads of this type useful in our "journey" (although I have unreasonable hate for that term...).

 

It's a few months down the track and our son is now on 3mg Intuniv, which was the target dose for his weight. Initially there was a benefit for quicker onset of sleep - the degree of his hyperactivity has meant that since infancy, his sleep onset time is around 11pm. That faded quickly, and then we saw some sleep disturbance, with more awakenings and nightmares/vivid dreams. It was difficult to work out how much was medication-related, and how much anxiety-related due to significant escalation in social problems at school. The benefits in that time - he managed the social problems and was able to not react impulsively and ask for help. That was a huge moment for us, as it meant that all sides of the problem were obvious, rather than just the reaction side of things ie him being the problem.

 

We've now moved to morning dosing, as he has not had any problems with sedation, and it's been a game-changer for us. The afternoons/evenings have been soooo much better, as the wear-off of his stimulant therapy has been ameliorated more effectively than with evening dosing. There is conflicting evidence/advice about duration of action, but our Paediatrician has discussed 7h as peak concentration, and that seems to have been borne out for us - it has always been the real problem time for us (afternoon/evening). So our trial of n=1 has been effective in that regard. There's also been more noticeable benefit for daytime appetite with morning dosing.

 

So that's my anecdata - for anyone who is in this thread and looking at medication changes/combinations.

 

Thanks to all those who responded and good luck to anyone who happens here searching for some individual experience of the rollercoaster ride of ADHD.

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IamzFeralz

That’s an interesting report Joan Jett. We give DS his meds in the morning too. Glad that it’s working out for you.

 

Now that DS has been on the Vyvanse / Intuniv combo for a year now I can say this has been our best medication configuration ever. Until DS was about 12, my feeling about the benefits of ADHD medication for him was mixed. It was very hard to find something that really worked for him as he was often so aggressive due to the ASD. His school reports in primary were always quite negative too.

His school report for his first year of high school however was really good! Lots of comments on how he was a positive influence on the class and tried hard at his work.

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Winging it Mum

I only just came across this one. DS13 is on a combo of Vyvanse and we introduced Intuniv last year & he's also on Risperidone to help him cope with the meltdowns. He has been on Dex in the morning & needs another 5mg in the afternoon. His system seems to burn off the Vvyanse in about 6 hours and having the Dex in the afternoon extends the good effects but also seems to reduce the crash of coming off of the Vyvanse in the afternoon. Trialled a higher dose of Vyvanse and that was ineffective in lasting longer.

Finding the right dose of Intuniv was difficult as too high and he would revert back to bed wetting so he's on a 2mg dose. Still needs melatonin to go off to sleep.

Medication wise it's been a difficult couple of years finding what works for him without turning him into someone that's vague and unresponsive.

There are times it still is horrible but I do think that's a combination to of being a teen and mornings are not good until he's eaten and the Dex starts to kick in. Stress from school had impacted him greatly in the first half of last year and that all came out in his behaviour.

 

Edited to add, I'm glad JoanJett you have found something that is working for your DS! It's interesting to hear about the morning dose of Intuniv working to, I'll be keeping that in mind.

Edited by Winging it Mum
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JoanJett

Thanks for the replies.

 

I think ideally, our son probably needs a short-acting dex top-up in the early evening, as getting to sleep is still the bug-bear, despite Melatonin - it's always clearly been the ADHD effect rather than meds, as when he was on Concerta/Ritalin top ups, late small doses of Ritalin were magic for sleep. A 24-hour stimulant would be the holy grail.

 

Good to hear everyone's experiences - it's clear that combination therapy has been best for us (mainly hyperactive/impulsive symptoms).

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JoanJett

I'm stuck in a virtual loop - updating my own posts ;)

 

But seriously, just wanted to update this post for all the "ADHD parents".

 

Combination medication has been life-changing for us. The key was switching the Intuniv to morning dosing. For the first time in his entire life, our 11 year old boy now asks to go to bed. It's impossible to explain what that means, except to those who've lived the same experience. Since he was 10-11 months old, he's either played or read (from 3.5 years) in his room until he eventually collapses into sleep. He's never bothered anyone, he just entertained himself, until we noticed and tried to force the norms of sleep upon him, and then it was like a battle to the death. Most nights, the battle lasted til 10-11pm, unless we were too tired to bother and left him to it. We were up to 5mg of melatonin for sleep. We'd noticed that late dosing of stimulants actually helped with sleep, confirming the good old ADHD as the culprit.

 

We've been on morning dosing of Intuniv for 4 months now. There's still a late afternoon wear-off period for the Vyvanse (which sometimes is like Dante's inferno), but almost paradoxically, sleep is now good. He actually feels tired and asks to go to bed, often earlier than he "needs to".

 

We're lucky that our Paed has a special interest in ADHD and had been keyed into all the local experience with Intuniv as it came on the PBS and suggested the changed format of dosing.

 

Just sharing in case it helps others.

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Mumsyto2
Posted (edited)

We are of the ‘old school’ with our child with these issues. So they were pretty much stabilised on their meds when new gen stuff came out.

 

Both their dev paed and ourselves agreed on the ‘if it ain’t broke don’t fix it’ approach. Things may not have been ‘optimised’ but over 15 years on from initial diagnosis/medication it is workable.

 

Personally I think the weight loss thing is a bit of a furphy. Mine was severely underweight and had GI investigations at a tertiary children’s PRIOR to even being prescribed stimulants. Investigations showed they were healthy, no macro or micro nutrient deficiencies, no underlying gut issues, 0% body fat and just rug them up, all well. The root cause for the weight issue was metabolism tied into ADHD, nothing to do with stimulants they were not even on at that time. Yes, stimulants made the weight issue even more exaggerated but both GI specialist and dev paed agreed if no macro or micro deficiencies ‘so what’. The only thing was they had no reserves so if they got gastro for example it was a 4 month recovery as they had absolutely nothing to sustain them in regards to normal body weight. The positive aspect was, weight aside, they were healthy as an ox so this was only an issue once every 2 years or so. They didn’t really eat on stimulants but obviously enough to survive and be mentally sharp. Pretty much the equivalent of a human greyhound.

 

They used Concerta with top up Ritalin as required post school hours with risperidone added morning and night. Never an issue with any liver/blood tests.

 

In line with their brain mapping profile they had limited need for sleep. To put it in perspective they never slept if a day from newborn with 15min catnaps at most and by 9mths were only having the night stretch for sleep, nothing else. That’s ADHD (not that we knew it at the time obviously). We used melatonin for years then it wasn’t effective and it was deemed they could function well on minimal sleep so we left them to it. The risperidone of a night did help with this though as otherwise we would have been lucky to get 3/4 hours - again, not due to stimulants but the ADHD profile.

 

They are now in their early 20’s, demanding uni degree (hard to get into) and doing well. We just went with what worked re medication they were on and ignored the new stuff - the ‘ain’t broke don’t fix it’ thing. They get pretty minimal sleep, a few hours a night, because they just don’t need it. Weight has never really improved but they are healthy. So, now roughly 6’ and 50kg, very muscular, sporty, lots of energy, zero fat. The rest of the family will catch a bug but they just sail through with perfect health, really really rare they ever get sick.

 

I wish we knew what we know now when they were young and along their journey, would have saved a crapload of worry.

 

ETA - I’d never touch a ‘paed with particular interest .....’ with a 10 foot pole. Have only ever used paeds who are truly qualified developmental paeds.

Edited by Mumsyto2

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JoanJett

Our Paed IS a Developmental Paediatrician, also with a particular interest in ADHD, which is not the case with all Developmental Paeds.

 

Your approach worked for you. I've never said that one approach fits all people with treatment. The "If it ain't broke don't fix it" attitude relies on things being acceptable for you. There weren't for us. My son was experiencing significant side effects that were affecting his daily life and impacting significantly in multiple areas. I'm explaining our situation for those who might be in a similar boat and being suggested new treatment and not sure what to expect. Never said it was for all.

 

And lastly, weight loss isn't a "furphy" on stimulants. There is a wealth of long-term data that shows that. It's a very different situation to have a child who was underweight before treatment and being investigated for possible causes as in your case (and he's also on risperidone, which counteracts), to one who went from a very lean but healthy weight to severely underweight and unable to eat at a young age in a time of maximal growth and activity.

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Mumsyto2
Posted (edited)

I think you took my post the wrong way. I did not mean that the medication my child was on should be the medication all kids should be on. They are all different and react differently to meds. I did not mean that if someone’s medication was not working they should not bother with exploding other options. It’s also great that you have a suitably qualified dev paed, never said they were not. You seem to have taken most of my post personally and not as intended. It was intended as sharing some lessons learnt over many years of dealing with this in case there were aspects that may be useful for others to consider or look into.

 

The things I did intend to come across were as follows.

Not all people do have a dev paed who is specialised in ADHD. To be honest I have not come across many that are not but agree it’s not necessarily 100%. Quite a few people do have a general paed with a ‘special interest’. I have spoken with GP’s and other specialists who don’t even understand the difference so felt no harm in pointing this out.

 

The other thing is that some people do feel the need to swap medications to the ‘new thing’ for the heck of it. Completely different scenario to needing to trial different things if the current situation is not working or ideal. I have had this situation many times when talking with people ‘oh, they should swap to x/ have they tried x, they should try x’ with x being the newest thing out (keeping in mind this was in general conversation, they were not the people treating my child, and it was quite common with paeds and GP’s). Even when my child had to swap providers at an older age it was the first thing that was suggested. Child calls me in from waiting room to deal with it and when I challenged why, and I have a thorough knowledge of all of them, they had to admit there was no logical reason or benefit. Yet, it was the first thing that was suggested. So again, thought it useful to flag that while obviously there is a need to change if things are not currently working, beware the suggestion to change just because new things come out and challenge exactly why they would be better (as opposed to new equals better). Often a different side effect profile will be droned as being ‘better’ but if for example you have no issue with that particular side effect profile, then why would it be better in that particular case?

 

The furphy I was referring to re weight loss, is not that it doesn’t occur with stimulants, but that it’s necessarily bad or the reason to cease or change. I am very familiar with the data, thanks and yes, it’s very common. The first thing would be a fascination with the growth charts/percentiles, won’t digress with that but with it being based on population averages and changing over time one could argue whether what is now classed as underweight is actually underweight. Anyway, that’s a debate that could rage for years :) but crux is again challenging the philosophy often held by both parents and professionals that weight loss and lack of appetite automatically equals a problem. Again, obviously if this causes a medical issue in regards to nutrient deficiencies, interference with growth, insufficient energy or disruption in functions then absolutely it’s a problem and options of ceasing or switching must be considered. However, the instant assumption that weight loss equals a problem should be challenged. I have had two colleagues, who are medical professionals themselves and instantly made this assumption with their own kids. On being asked to challenge this and talk to a few experts in the area it was admitted that in both cases there was no immediate health issue. So, then it becomes anticipation of a health issue that may or may not occur and frankly this one’s easy to monitor and intervene if necessary. In both cases, the weight loss and lack of appetite never eventuated to actual health or growth issues (again, would have been immediately and easily captured if these things did show signs of being an issue), just super skinny yet very healthy kids. As you will know from the studies, there is also a plateau effect that can occur with stimulants for growth but then it should normalise so definitely needs monitoring to keep an eye on it.

 

Not that it was any point in my original post but will comment as it seems to have taken an odd tangent. Risperidone is NOT used to counteract the effects of lack of appetite in conjunction with stimulant medication. That’s odd beyond belief really. In our case my child was on stimulant medication for many years before being put on risperidone. Their weight was pretty much non existent before stimulants and on stimulants, walking skeleton with skin, but they were perfectly healthy (no nutrient deficiencies, super energetic, growth fine), with the only issue being the need to be really rugged up during cold weather, way more than the typical person. The risperidone didn’t ‘fix’ any issue caused by the stimulants they had been on for years and was in no way used to balance out any issue. Yes, it did increase their weight, which was neither here nor there given it was not an issue, and in fact their weight was deemed a huge positive when looking at the option of risperidone given the issues it has with that aspect.

Edited by Mumsyto2

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JoanJett
Posted (edited)

I took your comments "personally" because this whole thread was started to ask about others' experience with this particular med combination, which we were starting because of problems, and because there were no other threads about this combination and I was curious about others' experience. The updates have been about our personal experience of changing to a new combination, as the availability of Intuniv in Australia on the PBS is relatively new, within the last 12 months. It's not a "new" drug even in ADHD, it's just now available at a subsidised price.

 

Quite frankly, I found your whole post a little odd in that context, as it's not commenting on either of the meds that the thread is about. It also does read as being dismissive and critical of people making changes, even if you did not intend it that way. It was very clear from the first post that there were many reasons for us to change treatment, not just because something was "new". We've had 5 years of using one medication (in different formulations), and it was clearly causing problems. I wasn't asking what others would do - as educated parents and medical professionals we can make an informed decision with options presented - I was asking about others' experience with these medications.

 

Lastly, I didn't say respiridone was used for the indication of counteracting appetite suppression. I said it counteracts appetite suppression. ETA meaning that a side effect can be sometimes be helpful in an overall clinical situation and can explain why ongoing weight loss (not "low" weight, as they are two different things) has not been an issue for your son. There was absolutely no suggestion that was the reason it was prescribed.

Edited by JoanJett
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FuzzyChocolateToes

 

ETA - I’d never touch a ‘paed with particular interest .....’ with a 10 foot pole. Have only ever used paeds who are truly qualified developmental paeds.

I'm not the OP and the OP can speak for herself obviously. However, I completely disagree with this quote in particular. Our paed specialises in ADHD. He is qualified.

 

I am interested to read about Intuniv. We have never been able to get the dose of stimulant up quite where we'd like to due to side effects.

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JoanJett
Posted (edited)

I'm not the OP and the OP can speak for herself obviously. However, I completely disagree with this quote in particular. Our paed specialises in ADHD. He is qualified.

 

I am interested to read about Intuniv. We have never been able to get the dose of stimulant up quite where we'd like to due to side effects.

 

By the virtue of my nature, my education and training, and my life experience, I'm pretty averse to absolutism. Don't often use the words never or always.

 

The issue of who to see for ADHD is complex. Just some of the issues -

- Developmental Paeds often have an age cut-off, so if you have an older child, they're often not an option

- I personally think that the younger the child, the more important they are to see, as ADHD "rarely travels alone", and the ADHD-type symptoms are often the most glaring and can be the tip of the iceberg for other undiagnosed developmental issues

- people who live outside of big cities often have more restricted access to Developmental Paeds, and a Paediatrician who has additional training in, and an interest in ADHD can be a valuable resource. Many general Paediatric trainees do fellowships in sub-specialty areas. I'd rather see a generalist (who is still a specialist) who has an interest in a condition and keeps up to date than a sub-specialist whose "training" was 20 years ago. I'm a specialist. Technically, I have "trained" and am "qualified" in all the conditions in my specialty and can treat them all, but that doesn't mean that I'm the best person to see for every condition in my specialty - the reality is that most specialists sub-specialise.

- not every Developmental Paed sees patients for ADHD assessments and ongoing management, either because it's not "their thing", or because they are so swamped by other developmental cases that they have to ration their services

- Child Psychiatrists are often overlooked, and for some kids who have complex anxiety or other conditions, they may be a better option

 

Most importantly for those of us who have children or other families members with ADHD, the advent of interest in other treatments and combination treatment is actually a really positive thing. Stimulants are great. They work for the majority of people, there's a long history of use and supporting data about effectiveness and safety, but they also have side effects. Also, they don't work for everyone. Looking to improve treatments and minimise harmful effects is at the cornerstone of medical research. I for one am grateful that there are more options - it's pretty common for many medical conditions that more than one medication is needed to optimise treatment.

Edited by JoanJett
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