My son experiences tachycardia on Atomoxetine. We lowered the dose and his pulse has not gone down much. I believe it is a train on his heart and I don’t think this is good for him long term. Also lowering the dose means that his symptoms are not controlled so basically the worst of both worlds- still suffering from tachycardia and on top of that not controlling symptoms if ADHD.
Any thoughts about Intuniv, any success stories of kids who are on Guanfacine as a sole medication. Any tips, anything to look out for. Any failure stories with this medication. Please do post both good and bad.
My ADHD son used standard release Guanfacine as a sole ADHD/ODD medication for a number of months if I recall correctly. We don't use it by itself anymore. On its own it did the following good things:
1.) Help him fall asleep. One side effect is drowsiness, so we give it about half an hour before bedtime. Like many ADHD kids, he struggles to fall asleep without medication. When we forget to give him his Guanfacine before bed, we often realize that we've forgotten it because he's still awake an hour or more after the settling-into-bed routine. When we give it, he's asleep not too long after. We have not given it during the day, but I presume that a feeling of drowsiness would irritate him and worsen his mood.
2.) Reduce defiant mood. He has ODD, which means he compulsively tries to thwart authority by defying, and it appears to be a mix of default anti-authority sentiment and low impulse control. It looks like Guanfacine addresses the default mood a bit, because my son is still compulsive, but the responses tend toward questioning when he's medicated, versus more aggressive defiance when he's not.
3.) Did not affect appetite. Ritalin, which we'd tried before Guanfacine, made it hard for him to eat. Guanfacine does not appear to affect his appetite.
Downsides:
1.) It doesn't do much to affect his hyperactivity. If it's addressing this at all, it's not enough at 1mg to make a notable difference. This means even if he's in a less surly mood, he's still compulsively seeking stimulation. Unlike when we tried Ritalin, he was still ignoring boundaries, invading personal space, emoting exuberantly and constantly as a stim regardless of inappropriate time or place, reacting with overly emotional volatility to minor offenses, and proving unable to tolerate his own quiet company for more than about 5 minutes a day (which means constantly badgering everyone around him to entertain him). But when we tried a larger dose...
2.) ...2mg/day made him surlier. Irritability is a Guanfacine side effect and at 2mg he was notably irritated, with even less distress tolerance than usual, which he took out on everyone. We did wait a while at 2mg to see if the side effect was temporary as part of the onboarding process, but it did not diminish until we adjusted back down to 1mg.
3.) 1mg/day didn't help much with morning surliness. It might be an impervious symptom for us.
Duration of effect:
We primarily medicate our son so he can perform at school, which occurs 13-18 hours after taking Guanfacine. His teacher began reporting improved mood at school after Guanfacine had been routinely given for about a week. The defiance we directly perceive happens before and after school.
The surliness at 2mg had been observed in the afternoons after school much of the time, and his teacher had reported some difficulty with him during school hours. That means the "irritability" guanfacine side effect, perhaps in combination with rebounding from 2mg, was presenting almost a whole day after taking the dose. Thus, it's long acting in our son, despite being the 'standard release' formulation. Your mileage may vary.
Conclusion:
Guanfacine was not enough on its own for us.
Presently, we give our son 1mg before bed in combination with some morning medications. We aren't quite satisfied with results but medication management is an experimental process that you can't rush, with results that have to be evaluated long enough to reasonably separate them from those attributable to concurrent non-medication variables. I wish you the best of luck with your process!
Thank you so much for this comprehensive description of the whole process for your son. Sadly in the UK ‘best practice guidance’ is to give a sole medication for ADHD. They won’t mix stimulants and non stimulants or anything else. I kind of understand now that it’s for safety reasons when cardiac side effects occur and can be intensified when there is multi medication involved…
May I ask, has your son ever had a cardiology consultation and a proper check of his heart, like ECG etc.
My son initially was started on Methylpenidate 30mg which now in retrospective I feel was much too high dose for a little boy like him. It didn’t go well, he got very unwell neurologically. But no doctor warned me that stimulants also put significant strain in child’s heart, especially in large doses and especially if let’s say there was some undiagnosed pre-existing heart condition. When I look at the previous consultation letters I can see that his pulse was already high on Methylpenidate. It carried on being the same high (but not too high on lower doses Atomoxetine). But it skyrocketed when Atomoxetine was increased to 40mg (1.2mg per body weight).
I will be pushing for cardiology consultation before commencing on Intuniv.
It’s interesting that your son has been taking the standard Guanfacine (not slow release Intuniv). I will be inquisitive about this when my son’s doctor will prescribe.
I can completely relate to what you say about ‘defiant’. My son has never been defiant at school (however mind you recently he told me ‘I like school because I don’t have to do anything and at home you make me practice maths and do work’).
He also is mostly compliant when his dad tells him to do things, so let’s say with me only present he will sit at his dinner and shout that he won’t eat until he has TV on or he has a fit because I told him to eat his dinner and stop reading a book at the same time (how can he use cutlery properly when he tries to flick pages at the same time). Then he hears his dad coming down the stairs and he stops this nonsense immediately and starts eating nicely! It’s just me that ever since he was a toddler he is oppositional and defiant to. So let’s say he used to have speech therapist coming weekly to do speech therapy with him ever since he was 2.5 years old. About when he was 3 he started doing this thing that she would set up everything and wanted to start the session but he’d just walk and stand at the door and refuse to do stuff with her and me. I told then my husband that he has to participate too, that it can’t be that I am the ‘bad parent’ who only does stuff that is ‘no fun’ and ‘hard work’ with him. What then happened - the week it was my week to sit in session with him he would refuse and stand at the door. The week his dad was in the session he would immediately sit and participate and try his best and work hard to practice speech sounds and do all the games that the speech therapist wanted him to do.
Basically I love my son with ADHD but having this behaviour from him since toddler - behaviour particularly targeting me but not my husband… and my husband many times telling me ‘That’s something to do with me because how comes he does everything for him.’ But surprise surprise in Covid lock downs he stopped doing stuff for either of us and he was resisting until we’d budge and allow him to have fun and play or go out on bikes or to play building dens (throughout lock down my ADHD son has not done a single piece of work given by school- he would shout that he only wanted to play).
You basically start to ‘not like’ your own child, resenting him. Especially that I am the one who quit work to stay at home and take care of both kids (luckily the younger doesn’t have any neurodevelopmental condition and he’s such a joy to be around, everyone likes him, he’s so loving and makes us proud parents, he also has some brilliant strategies how to deal with the ADHD brother and also he kind of loves him unconditionally which is something that I find very hard to do…).
I mean irritability… my son already has it on Atomoxetine so as long as it’s the same level on Intuniv, I suppose we can live with it… We just will have to try I suppose and bare in mind that lower dose might be better rather than thinking ‘oh if we give him more maybe it will work better’.
Hi there - you're welcome! I am sorry to hear that you can't experiment with mixing medications. Supposedly that strategy can sometimes result in lesser total medication consumption. I don't have a winning strategy to offer yet anyway, but your options are limited if the best practice is to keep to just one medication at a time.
My son has never had any kind of heart monitoring, though that potential issue is on our radar as his father has a heart condition that we've been told is cosmetic but includes tachycardia and arrhythmia. Our son has not evidenced any heart abnormalities yet, even when medicated.
My son was also on methylphenidate. He started at around 5 years old because it was the only ADHD medication approved for him at that age in the US and we needed to do something to support him because he was beginning to act out uncontrollably at school. I was informed that ODD can manifest at 4 or at 14 and that the early-manifesting version has a worse prognosis unless addressed swiftly, so we decided to medicate. The thing is, nothing less than 20mg in a single dose of the short acting formula was effective, and then if we wanted to top him off it would be another 10mg in the afternoon. That's 30mg in a single day, like your son, and it was a scary high number in the professional opinion of our pediatrician. But we were rather fastidious in experimenting systematically (with 5mg increments) and the results concluded each time that less than 20mg didn't do anything - and there was no evidence that less than 10mg worked to top off.
We didn't medicate every day and we didn't top up every day - we would usually give him weekends and school breaks "off", which meant enduring worse behavior than usual but allowing him to eat with a normal appetite and give his body a drug break.
When he was 6 we experimented with other medications which had become available because of his age. Methylphenidate had been working in some ways, but the side effects (higher anxiety, tics, loss of appetite) and our concerns about long term use of stimulants in young children informed us to try alternatives. That's when Guanfacine came in. But we'd already seen that even the short-acting formula for methylphenidate lasted far longer than the average reported time, and did not want to 'overmedicate' him using long-acting Guanfacine. I am also somewhat sensitive to medication, responding to even small doses, so perhaps he and I absorb medication slowly or don't metabolize it as quickly?
Reading your account about how your son only defies you was chillingly accurate to my own experience. I was definitely his main target when he was younger (about 1.5 years old and onward), and I think that has to do with how at that time I was the primary care provider. That made me both the safest parent and the source of the most authoritative demand. As the safer parent, all the anxiety he'd experienced during the day was let out on me. I've heard it said that kids 'let their hair down' around their mothers, and when your child has mood issues, that's not an enviable position. Meanwhile, perhaps relatably for you, my son was an angel and a charmer for everyone else... at first. Once the 'honeymoon' period of any of his relationships wore off his teachers and friends' parents would start to see the sides of him that he'd earlier been saving just for me. Teachers especially were scratching their heads - what had happened to that sweet, charming boy?
It sounds like your husband was provided a similar treatment when quarantines forced them together unlike before. I really hope that has helped your him get an answer to his query and that he no longer suspects you of some ineptitude. That really can make a person crazy - feeling gaslit by your own husband and kid(s)! Please know, I really understand the struggle to remain appreciative of a person everyone expects you to adore without compunction when they treat you this way, whether they're in control of themselves or not. It's still abuse on your end, isn't it? You're still being pulled through the stretcher.
Our son's ODD has been a constant struggle for us. The hyperactivity, inattentiveness and emotional dysregulation of ADHD almost take a back seat to the compulsive defiance and aggression that comes with ODD. While medications that reduce compulsions do help (because the defiance is compulsive), they are only part of the solution. With ODD you really need a two-pronged attack, and behavioral training is the other half.
Whenever possible, remove yourself as the instigator or communicator of demands. I use a schedule that lists the daily requirements and a clock that chimes at times I have set. Because it's a schedule and a clock, and not me, my son is relieved of the compulsive need to thwart me as an authority. He also feels equipped and enabled to take initiative when he responds to the clock, which are good for his self-esteem. A lot of the defiance is because of a low self-esteem; when he thwarts authority, I think my son feels he has surmounted something significant. Being reminded to do everyday tasks by a person feels insulting, even though if I rely upon him to remind himself, he will most likely fail. So the schedule and clock work. I have been trying to add in a calendar and calendar-use-hygiene, but that's proving intimidating. I have to move slowly sometimes or I'll trip his feelings of inadequacy and be punished for it.
I'm also very sorry to hear that teachers aren't doing their part to encourage him to do schoolwork. I understand that if he has shown them defiance and they're too taxed to handle that and the other responsibilities of teaching, they might decide it's easier to leave him to his own devices while he's there. But that drops all the responsibility into you, if he's to be believed that they 'don't make him do anything'. My son has misrepresented his teachers and assignments at school many times, though - it might be part of his methodology in trying to control me, or testing to see what he can make me do. It's not comfortable being the test subject, but again I think that's a 'perk' of being the safest person. I'm not going to harm him for it, so if he wants to defy and control, he has chosen an appropriate target.
If I may offer an additional bit of unsolicited advice? You mentioned that your son became neurologically unwell. Methylphenidate has a long history of use in children and a decent number of longitudinal studies. Overwhelmingly, people given ADHD medication starting in childhood evince long term brain changes that are positive, as they approximate the adult brains of non-ADHD persons. Methylphenidate did exacerbate my son's tics and anxieties, but it didn't cause them. My husband has OCD symptoms as well, and there's anxiety in both of our family lines. It's very possible that your son's behaviors were inevitably surfacing simultaneous with you medicating his ADHD, and that you did not cause him to suffer.
thank you so much! I read your post briefly and in the evening will read it again.
The neurological side effects were a fact on Methylphenidate for my son . The list of side effects is very clear and some are ‘rare’ category and it’s just and luck that he experienced this. Now I read other parents saying that their kids reacted better to amfetamins and maybe in the future we will try this is his heart is okay.
In regards to methylpenidate - example my son has never wet himself since he was toilet trained at age 3. On Methylpenidate he started suffering from ‘urinary frequency’ particularly strong at time when medication comes out of the system but really it was messing his whole day. He would walk around crossing his legs and feeling like he needs to pee. He could not hold urine in bladder and daily at any time between 2-3 pm he had accidents of wetting himself. Basically he kept going to the loo a lot and it still would happen that then he just would t make it. It was devastating for a 8 year old to have this happening at school. His bladder stopped being able to hold full amount of urine. The day we stopped Methyloenidate ‘urinary frequency’ side effect stopped.
To be honest this one single side effect was impossible to carry on this medication.
But there were so many other unacceptable and causing suffering side effects on Methylpenidate, no point even starting writing about it.
We will see, I’d say cardiac side effects are serious because once someone’s heart is affected then let’s say if the person needs surgery in long Anastetic- the even minor heart damage may be a contra indicator and risk that the person will not wake from anastetic. It’s just simple events like let’s say needing appendix removed or gall bladder or a knee surgery- for all this people need anastetic. So if the heart got damaged by ADHD medication then it’s not cool…
I really want to apologize if it seemed I was telling you I knew better than you did about your son and the damage the medication caused. You're absolutely the person who'd know best between us. I didn't know the symptoms your son had experienced so I thought they might have been some of the more common 'side effect' ones like tics and compulsive physical motions, which my son has.
I also want to say that I applaud you for making yourself aware of the risks, and observing side effects, as part of trying to get the best support possible for your son. I have no experience with much of what you describe for the son we have medicated, though some of them are similar to symptoms his younger brother seems to experience.
For both boys we introduced voiding into a potty or toilet in infancy. Our older son picked it up quite readily but his brother has always had issues. I think he might not receive adequate information from his own system that tells him he needs to go, as since birth he's often held his bladder to the point of pain for inexplicable reasons, then released it and felt relief, only to sometimes repeat the experience. Even now at 4 years old, having known about the potty all his life, he resists using it, and I think the resistance might be physical discomfort or neurological dysfunction, because we are exceptionally low-demand about it. He seems to be caught by surprise that he needs to go very often, startled by the fact it's happening much of the time. Sometimes he gets a cue. But not most of the time.
I know this doesn't compare at all to what you and your son have experienced from the loss of the control that he used to have, and you have my respect for your steadfast dedication in seeking out solutions for him.
It is probably better to be so easy going about toilet training with your toddler 👍
I mean, my both sons never had trouble with toilet training, but I think it’s because I wasn’t over ambitious and I started late- about when they were 2 years and a bit. And I was giving them pull ups for nights even at 3 even though they actually didn’t have night accidents.
What I’d say, I was really shocked how my child’s paediatric psychiatrist was very dismissive and rolling eyes at me when I said that my son who has never wet himself night or day since toilet trained at 3 suddenly started wetting himself in the day and seems to have urinary urgency even when his bladder is not properly full. I was listening at the door and he wasn’t having proper flow like emptying the whole bladder.
Psychiatrist first said that it’s probably psychological and that I needed to refer him to psychology services. Then when I kept insisting that it’s not he asked to have all the physical checks- checking his urine for bacteria (infection) and all. Then once this came clear he said ‘you need to refer him to incontinence clinic’.
My husband and I were devastated and started doubting ourselves and what we see clearly in a a list of ‘rare side effects’ so my husband said look, he suffers from a range of other side effects too, psychiatrist clearly won’t budge just because our child who is 8 pisses himself daily at school so let’s bring in the side effects which are more common and he also has those. So we explained in detail the suffering with rebound and how he was 100 times worse in the mornings than before on medication and that we as family can’t live like this with him not able to eat and sleep and being aggressive daily at about 3 pm onwards when meds come out of the system.
Psychiatrist didn’t t even blink, he just said ‘Oh yes he’s suffering from severe rebound and since his sleeping is so bad, then even longer acting for Ila would not fix that, so what do you want to change to- Atomoxetine or straight to Guanfacine’ . I was stunned that he was actually asking us.
To cut it short- we got prescription for Atomoxetine and from next day we didn’t give Methylpenidate but straight to Atomoxetine and it’s been now a year and he never owed himself again.
in reply to
sorry! Never peed himself again since he’s on Atomoxetine.* He has full control of his ladder since stopping Methylpenidate, he didn’t need ‘incontinence clinic’ nor the ‘psychology services’ , he just needed to stop Methylpenidate.
However now he developed tachycardia on Atomoxetine. And that’s serious as tachycardia can cause blood clots and lead to strokes. So that’s not cool either.
Hence we are back to square one and asking peoples opinions about Guanfacine
My son is 8.5 years old is ADHD with a language gap and went through many stimulant meds. After begging doctors to consider he was overstimulated our neurologist finally said “this kid shouldn’t be on a stimulant”. He looked as though he was high all the time and was becoming more and more aggressive on the stimulant. With the neurologist we started Guanfacine alone 3.5 weeks ago. He’s currently on 2mg. He’s eating more and growing faster. I can see how the stimulant med wasn’t allowing him to thrive. His aggression has subsided. The Guanfacine and ABA therapy seem to be a successful track for us currently. I do recommend Guanfacine alone.
Thank you for describing your son’s experience. I totally can empathise with what you say about the stimulants. My son was on 30mg Methylpenidate and yes it did look like having a child who is high on street drugs. Now in retrospective I think had he been on 5mg maybe he would be fine but his doctor kept upping weekly and saying that the ‘maintenance dose is 30mg’. I didn’t t know enough back then to out my foot down and say ‘But he’s focusing just fine on 5mg- he has just watched the whole Disney movie at home without walking away after 5 minutes …’ And then it went down hill. And then we stopped stimulants. We swapped to Atomoxetine, Atomoxetine caused tachycardia…. Tachycardia doesn’t go away with lowering the dose…
And now we are heading towards another swap… let’s hope that Intuniv will do the trick for my son, the same how it helps your son.
As from tomorrow I was told by my son’s ADHD nurse to stop Atomoxetine and wait a month to see that his tachycardia stops.
He has to be fully off meds and with stabile heart rate to start Intuniv. That what I was told.
His nurse pointed out that after Intuniv there is nothing else we can try. However I pointed out that we only tried Methylpenidate (out of all stimulants) and then went traitor to Atomoxetine. I think that it well may be that he would not suffer side effects on a small dose Amphetamine based medication.
I won’t worry about it now. We will try Intuniv in a month time and see.
Where are you located? We decided to go a couple different routes outside the pediatrician. The one that finally got us where we needed to be was a neurologist. We also got in with developmental medicine at children’s hospital. The next step would be either of those if you don’t feel heard or psychiatrist.
Oh 😄Wr are in the UK and it is very conservative here with the ADHD medication for children. There are strict NICE guidelines and ‘best practice guidelines’ are currently for mono pharmacotherapy (sole medication to manage ADHD, jo mixing of stimulants and non etc).
We have had already 2 private paediatric psychiatrists and some time ago to cut cost I transferred my son’s care to NHS.
I’d say, physical health is a priority and I want to see for myself that stopping Atomoxetine will stabilise my son’s pulse.
I will still be asking our general practitioner to refer to cardiology as I would like my son’s heart checked in case there were maybe some undiagnosed heart problems unrelated to ADHD medication.
I just think one month is not a long time. We will never know if Intuniv works until we try it.
One month does seem long. Sounds like you have it all in check. I would totally be doing the same thing with cardiology. The intuniv can lower blood pressure. They all have some kind of side effect ufortunately
Yes unfortunately all ADHD meds have side effects of one sort or the other. Tachycardia freaked me out as it can lead to blood clots and strokes when it goes untreated and worsens for a long time.
I agree, 1 month off meds seems very long but I can’t argue with the doctor.
I wish we could start Guanfacine sooner especially that as you say ‘it may lower both pulse and blood pressure’. Although my sons blood pressure is just fine and it would be disastrous if it lowers on Guanfacine! He just needs his heart rate to return to normal at rest.
In the UK it’s very conservative with ADHD meds. I think it’s too conservative! I think there is some ‘perfect middle ground’ somewhere - in the UK it’s too conservative and in my opinion in the US kids often may get at risk of over medicated with multi medications because multi- pharmacotherapy is a long standing practice in managing ADHD in the US…
My 6 year old was on immediate release Guanfacine alone for 6 months. It didn't carry any side effects that we noticed and that was a welcome improvement from the not sleeping not eating kid we had when she tried Ritalin.
The main improvement was that she was less aggressive. After months of OT and therapy it seemed Guanfacine was the only thing that made her stop hitting people, throwing things and destroying her room. She still had plenty of emotional disregulation (yelling/crying) but it tampered down the worst of it.
The initial improvements we saw did wear off in a few weeks so we increased the dose to 1.5mg. The patterned happened again where things were great for a few weeks then started to wear off. I didn't feel further increases were sustainable so while she didn't get to keep the best of the mediation's affects there was still enough of an improvement that we stayed with 1.5mg.
There were no focus improvements though which is why we ultimately went back to a stimulant in addition to the Guanfacine.
Hi there! My son started on Guanfacine about a year ago and has maintained on 2mg ER nightly for quite a while. We added atomoxetine about 6 months ago due to his poor response to stimulants, and it seems to have improved his focus. The Guanfacine greatly improved the impulsivity as well as increasing his mood, though I think that that has to do with the fact that he wasn't getting in as much trouble at school, since he could control the impulses better. It improved his sleep and he manages quite well on it, growing and maturing well. He's now 7.5 years old. When we started taking it, the psychiatrist explained to him that the "brakes" on his brain don't work as efficiently as some other people, and the medication will help him to put on the brakes easier. It was a great explanation, as that's what seems to have happened. His focus improved but not as much as when we started the atomoxetine. But the Guanfacine alone was such a lifesaver when it came to his quality of life, since it stopped him from being the kid that was always getting in trouble. I hope it works for you and your family, good luck!
Hi there. My almost-7 year old has been solely on guanfacine ER since last summer. It has reduced his defiance and helped him regulate his emotions and keeps him eating and sleeping well. He still has a lot of impulsive behaviors which occasionally get him in trouble, but they are no longer out of anger, so his school reports are so much better this year that we are leaving his meds alone for now.
Thank you for sharing. Have you been monitoring your son’s blood pressure and pulse on Guanfacine? I read that it can dangerously lower pulse and BP. It’s just I am worried as my son has a mid sleeper bed and even without the meds he has fallen in the past like a log from it when trying to walk to the loo at night. I am worried if he’s feeling dizzy and falls etc. 🫣I know, I worry too much!
It’s just scary now I know that Atomoxetine caused my son to have tachycardia. And Guanfacine can do opposite…
His psychiatrist had me bring him in for blood pressure testing a month after starting him on guanfacine and he was fine, but she didn't indicate that we should do any further monitoring. I'll ask about it next time I bring him in.
Thanks for sharing. I imagine all those side effects such as bradycardia are very rare.
The plan is my son will be started on Guanfacine in a month time. They want Atomoxetine fully out of his system and I so much hope that his heart rate will come down to ‘normal’ once Atomoxetine is stopped.
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