Guafacine/ intuniv hallucinations!

[Chipcookiemom]

Mom to a 7 year old with adhd and dyslexia. He's a sweet and energetic guy who has increasingly become more reactive/aggressive at home and it was becoming pretty unlivable in family life. We started 1 MG of guafacine a week ago. His coping ability to manage emotions like anger during day have dramatically improved, but he's having some scary nighttime fears/hallucinations which it looks like happens for some kids on guafacine. Like 2 hours of being afraid bugs are crawling on him from like 2-4 am and my husband and I having to hold and comfort him till it passes. We will get a same day doctor's appointment tmrw. But pls share if you experienced anything like this. It's very scary

[Beaminglight09]

I am so sorry to hear that your son is going through that!!! My son as well has ADHD and he takes Focalin XR. This works very well for him. I do believe we tried that Guafacine with my kiddo and he seemed extremely irritable and angry when it wore off and I stopped it immediately!!!! Everything works differently for everyone and I am hoping that as your son continues and his body adjusts to the medication it will help him!! If you feel it isn’t working for him just keep in mind, you are mommy and daddy and you have to do what you feel is the best for him!!! I hope it all works out💜

[Aspen797]

I’m so sorry! Guanfacine helped our son a lot with emotional regulation but he had to start at .5 mg and really, really slowly increase upward. Otherwise it interfered with his sleep (waking in the middle of the night and not being able to fall back —-but no hallucinations or bad dreams—how scary!). Starting on a low dose and going really slow in inching upward helped him be successful on it but really every kid is different. Glad you’re checking with his MD.

[GhostOrchid]

Guafacine worked great for my son’s emotional regulation and I didn’t *think* he had any side effects until I read your post. My son was convinced he had bugs on his head. He wasn’t panicking, but he was constantly combing it and trying to catch anything that fell onto paper. We checked him for lice constantly. We even had the doctor check him for lice and he still wasn’t convinced. I thought it was the Ritalin. It never occurred to me that it might be the Guanfacine. He has been on it a couple of years now. That symptom eventually subsided but he still combs his hair a lot!

[Chipcookiemom]

Fascinating. Yes it was bugs, snakes etc he felt/saw crawling all over him but multiple hours at night keeping him up. His daytime behavior had actually improved but this side effect was severe and our doctor had us stop today and we're back to the drawing board. He was only one 1 MG. Glad that symptom subsided for your son.

[Littleme2000]

my son did have trouble at first with guanfacine in that it made him super tired and I do remember him having crazy dreams at first, some stomach nausea. We eventually stopped giving it to him at night, went from .5 mg at night to 1 mg XR in the morning, and that worked for us. We do a combo of 1 mg XR and 5 mg of Focalin XR during school days, and the XR formulations really worked for us. Less of a peak, more steady support during day for a longer period of time. Good luck! 🤞❤️

[Mamamichl]

Guanfacine did t work for my partner or his first born (my stepkid). They both got light headed and my stepkid even feinted because of low blood pressure.

[Missylee]

Im so sorry, its so challenging as a parent to know what to do in these cases. Is he on any other medication? Personally It made my son very tired and I'm not sure if it was because of covid or Guanfacine but he gained a massive amount of weight. I kept him on it for 2-3yrs because the doctors didn't want to take him off of it due to his outbursts. My son is now med free. He turned 13 and begged me to not take his meds. My doctor and I gave it a try and has his adhd symptoms are very clear, he looses everything, spends money like its water and is messy as all heck but not anywhere near as angry as he was on the meds. Personally my son's happiness came first.

[arrh121]

My 7 year old son has been on guanfacine for about two years. He started with the immediate release version and had part of it in the morning and part at night. After increasing his dose about a year ago, he had almost the exact same issues as your child (seeing bugs, snakes, and mosquitos during the night) and he needed to sleep in our room for a few nights. We then reduced his dose and the hallucinations diminished but still occasionally happened.

We considered discontinuing but then after talking to the doctor, we switched to extended release (which has less of a peak) and the hallucinations disappeared and his sleeping improved. Guanfacine (and atomoxetine, which he also takes) have helped his behavior, which is still challenging but much improved.

Unfortunately it sounds like you're already using extended release? Definitely should talk to the doctor about it, but you're not alone in this experience.

[Chipcookiemom in reply to arrh121]

This is super helpful to know. Sharing these anecdotes with our doctor. Amazing how medicine affects kids differently.

[anirush]

My grandson has been on it for a long time. It really helped his anger with risperdone. Added zoloft a few months ago to help with anxiety and depression. He is pretty stable which is such a relief after years of issues. Meds are so unpredictable, never know what might work.