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oh the irritability… is it the stim or non-stim?

Bookworm365 profile image
18 Replies

hi all. Our son was recently diagnosed ADHD, and he currently takes guanfacine 1mg at 6:30pm and metadate cd 10mg at 6:45ish am. We are intensely struggling with aggression, impulsivity and disruption at school and have for years.

Here is what we have tried so far:

Vyvanse 10mg

Vyvanse 20mg (seemed to make good headway for a week and then things went south fast)

Vyvanse 20mg + guanfacine ER 1mg

We jumped ship from the vyvanse for another stim to see if that could help with the irritability, flat personality, etc. It’s been a few days on the metadate, and he’s really irritable and still having the same school issues. The only thing the stimulant seems to help with is his working memory (used to simply say “I don’t know” when we’d ask him why certain things happened at school), hyperfocus (mainly preferred activities), and eloping in the classroom.

The guanfacine has helped him fall asleep at bedtime but we haven’t noticed much else (almost two weeks in) except that he also seems to be having intense bad dreams.

We and his LMHC are thinking anxiety could be a factor at play here, which could be exacerbated by the stimulant. Has anyone experienced something similar and what did you do? I am wondering if splitting the Intuniv dose between evening and morning could be effective and help counteract the irritability of the stim more? Drop the stim entirely?

Other things:

-We are working with our pediatrician currently but have a child psychiatrist appt in early March

-Our child also has sensory processing disorder (seeking, proprioceptive, some auditory)

18 Replies
Peerandparent profile image

First, make sure the diagnosis is accurate. Often someone gets diagnosed by teachers or a family doc, and no proper assessment is made. There are a million things that present like ADHD, so making sure that's what you're dealing with is essential. I honestly don't know much about sensory processing disorder, so it's important to consider intersectionality between ADHD, their other disorder, their mental health and, well, life.

Try to keep a log. What is the behaviour, how long does it last, any identifiable triggers, what you did, and how they responded. Make it shorthand so it's easy to maintain and easy to review at a glance. Maybe even chart the measurable bits.

This will help you spot potential patterns, and also allow you a bit of objectivity when measuring the effects of med changes.

Debrief with them when everyone is able to do so calmly. What their take on the situation was, what they think set it off, what would be helpful next time, what they feel the consequences might be. See if they have a full understanding of the natural consequences, and build that into the discussion. Some conflict sometimes develops when they only see the immediate transgression, and you are thinking about other situations where the same behavior might have dire consequences.

I have anxiety and ADHD. Yes, a stimulant can make the anxiety worse. On the other hand, most of my anxiety stems from social and performance issues caused by ADHD, so treating the ADHD is the highest priority, not just because it helps with the cause of my anxiety, but because it makes it easier to engage in the strategies to manage the anxiety as well.

I was diagnosed in my first year at university, and I had a lot of irritability, but it wasn't from the med. It was from:

Learning that there was treatment that could've helped all along

Discovering that the meds didn't "fix" things

Discovering that I had a long road of learning and self-discovery ahead of me

Resenting everyone who ever told me I just needed to try harder

Figuring out what the diagnosis meant to me, and how much of "me" was the ADHD

Dealing with all the idiots who know nothing about it except what they've heard on tv or psyc 101 and yet still consider themselves an expert and thinks that the mountain of clinical research is wrong

Figuring out my relationship with medication.

I could go on, but suffice to say that if the diagnosis is new, your loved one likely has a mountain of things to process, and may have their own biases to work through.

Bookworm365 profile image
Bookworm365 in reply to Peerandparent

thank you so much! We are eager to meet with the psychiatrist to gauge if he feels other factors could be at play that need to be addressed first. Great advice here!

Pattimum profile image

I can’t comment on Guanfacine although one major factor with Guanfacine is that it lowers blood pressure and hence I think the sedating and helping sleep effect at the beginning when child’s body gets used to.

My son couldn’t tolerate stimulants - aggression, hyper focus, almost like psychosis state…

Our experience is that Atomoxetine does the trick for our son. It works on different neurotransmitters to stimulants and different pathway to Guanfacine. I know that some parents mentioned they were giving both Atomoxetine and Guanfacine to kids and it worked well.

Bookworm365 profile image
Bookworm365 in reply to Pattimum

this is great insight, thank you. I know you commented on my first post too, about a week ago, and I really appreciate it!

We are starting to suspect stimulants aren’t necessarily right since we aren’t seeing much in the way of helping the impulsivity/aggression but it does help with focus/eloping.

Pattimum profile image
Pattimum in reply to Bookworm365

🫣Yes I comment a lot😄 Sorry! That’s my ADHD!

Well, all I’d say my son is also slightly irritable on Atomoxetine so I think there is no perfect medication. For him it’s showing as rude tone and growling instead of giving full sentence answers when we ask him questions.

And today I noticed he was also rude when the teacher asked him a question, he just answered in a rude tone and using one word instead of a whole sentence. I told him off and I told my husband that from now on we really can’t tolerate this because it seems it’s not only with us but now he’s the same with the teachers.

I mean I understand that medication has a side effect of making him irritable but he will get nowhere in life if he will be speaking in a rude tone of voice to people. He just needs to learn to control his tone of voice and even if he doesn’t feel like talking to someone he needs to be polite, that’s life.

Bookworm365 profile image
Bookworm365 in reply to Pattimum

I totally get it! I go back and forth between saying, I know these medications have side effects that could be disadvantageous but we can deal with that! And then turning around and saying just because the medication causes X,Y,Z, doesn’t make doing _____ ok. 😵‍💫

Our main focus is the aggression, which of course is exacerbated by irritability (and a lot of things, sigh!)

Pattimum profile image
Pattimum in reply to Bookworm365

And yes, I keep repeating myself 🫣

Aspen797 profile image

I’m sorry that you’re having such a difficult time. It’s so hard seeing our kids struggles, especially when they occur at school. Most often school related behaviors are anxiety caused-overwhelm due to sensory sensitivity, not getting the social piece, speech / hearing differences. You just have so much demand on their little under developed systems and they cannot cope. Has the school done a functional behavioral analysis to try to look for patterns? So hard.

Our son began guanfacine in the evening but we eventually landed on a split dosage, am and pm. It took about a month to see a difference and it mainly helps prefrontal cortex-executive functioning and emotional regulation. It can cause sleep disturbances (REM) despite tiredness initially, but that should go away with time.

For our son the stimulant helps with impulsivity and focus but, when he was little, it only did so much if other needs were still out there (sensory, pragmatic language) that need better planned accommodating until skills develop. Does your son’s OT work with the school on addressing his sensory needs there? Sometimes a collaborative approach helps if the school is receptive.

Bookworm365 profile image
Bookworm365 in reply to Aspen797

thanks so much! Yes, we have had an FBA completed, and he has had an IEP in the school for a year and a half already. He receives support from an OT, resource teacher and behavior analyst at school. Unfortunately, trigger(s) for the behavior have not really been identified. It’s not consistently happening just at a certain time of day, just generally.

I might ask our pediatrician about adjusting the guanfacine to split between morning and afternoon. What was the reason you made this change for your child?

Get me to the child psychiatrist! Ha! So many questions for them…

Aspen797 profile image
Aspen797 in reply to Bookworm365

Wonderful that you have supports in place at his school! We ended up splitting the times for the guanfacine because his psych wanted to move the dose to the morning for better daytime coverage. As we gradually moved to switching, we ended up finding half and half working well instead of needing to make the whole transition.

Bookworm365 profile image
Bookworm365 in reply to Aspen797

thank you!!

Lanego profile image

I had a similar situation. My 10yo started on extended release adderal and we lasted a 1-2 days before we stopped due to increased irritability and aggression.It was rough. Our pediatrician thought anxiety might be playing an issue, but I was skeptical. Nevertheless we stopped the stimulant and the child psych person began zoloft. We did this for about a month then added intuniv (1mg). This helped a great deal in his mood (a bit calmer but not much differenece in focus) but it did make him less interested in sports. About 9 months later we added back adderall xr at a very low dose (5mg), and he was able to tolerate it. The adderall helped a great deal with impulsivity and aggression, and he seems more interested in school. Hope that helps.

I still prepare him a day in advance for any change to his schedule. spend some time each night listening to him tell me about his day, and pile on the praise whenever he does something positive. I've really worked on staying calm in the face of his anger. That also has made a big difference.

Bookworm365 profile image
Bookworm365 in reply to Lanego

Thank you so much, this is very helpful. I very much agree that we see a better response from him if we can stay calm in the heat of the moment (some days easier said than done!)

T8T8T8 profile image

Just wanted to say it took 6 weeks for us to see any improvement with guanfacine. It might just be too soon to tell. The waiting is so frustrating.

Bookworm365 profile image
Bookworm365 in reply to T8T8T8

ugh, yes!!! All of this is definitely trying to teach me patience! 🤦🏻‍♀️

This is good insight, thank you. What was the main improvement you noticed with the guanfacine? We’re hoping it can help curtail impulse/aggression.

T8T8T8 profile image
T8T8T8 in reply to Bookworm365

Yes, when your kiddo is suffering you want results yesterday! We noticed improvements in anxiety, irritation, and aggression. Mine has anxiety disorder as well and it has helped..not perfect but progress.

Bookworm365 profile image
Bookworm365 in reply to T8T8T8

thank you! That’s promising!

amewhit profile image

Guanfacine ER made our 11 year son have horrible nightmares. We tried for 2 weeks., and we went off all meds last summer, but I swore the guanfacine helped some. So we decided to try guanfacine instant release, and NO nightmares. We started with .5mg pm, then added .5mg am, then 1mg pm, then 1mg am and pm. Very gradually. 1mg am and pm caused too much tiredness even after 2 weeks, so we landed on 1mg pm and .5mg am. It was the first thing that helped with impulsivity and calmed him down. Still needed help with focus and stimulants were not ok, we tried them all. So we added Strattera very slowly. So far, it has helped with his mood/irritabilty and a bit of focus. He is up to 60mg (he is 12 now) which is the maintenance dose. It's not perfect, but it really does help. He doesn't feel as sad anymore, and quicker to recover and accept feedback from us. We still need help with focus, big time. We are discussing with his psychiatrist in a week or so regarding that. I read a study that Strattera + Concerta or Focalin at a very low dose worked really well. I don't think it's common to combine them, but at this point I'll try anything if our psychiatrist is ok with it.

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