Can you get too accustomed to Guanfacine?

[Imakecutebabies]

Hi lovely community,

My 7yo son started on guanfacine the summer after turning 6. He started at 1mg with immediate drastic results; once his body adjusted to it we raised it to 2mg.

He took 2mg all through 1st grade and had a great year. Compared to kindergarten, he was like a different kid. (In Kindergarten, he really struggled with emotional regulation, immediately lashing out both physically and verbally over any perceived emergency or injustice.)

At the beginning of 2nd grade, he was again struggling somewhat and getting in trouble at school frequently, so we raised it to 3mg at the end of October. The psychiatrist said it was normal for kids to go up to 3-4mg and then level out. It helped him for about a month; he stopped getting in trouble at school and was a little mellower at home.

Now, just 2 months after we put him on 3mg, I feel like we're not seeing ANY effect of it at all. We're back to him flinging insults and rude remarks every few minutes about every little thing, his brothers getting hurt constantly at home because he goes flying into their midst to save whatever they've touched, and calls home from his principal again. Out home life is feeling the way it did back in kindergarten.

Have others experienced their child getting so accustomed to guanfacine that it is rendered ineffective? I don't want to keep increasing the dose every few months or he'll end up taking way too much; on the other hand, I'm not sure why I'm even bothering to stuff 3mg of it into his body every day when it seems to be having no effect at the moment. I'm also concerned that if we take him off of it, he's going to end up worse than he was before he started it, since this is his current state while ON it.

I guess I'm wondering whether I should try weaning him off it to see if it was making any difference, or raising his dosage yet again.

Thanks for reading, and for any insights.

[Onthemove1971]

Thanks for your post and it is not always easy to know why their behavior changes. Often it is not rhe medication. One thing to remember ( it is hard to do) understand he is not "meaning" to be bad. This is hard to hear (it was hard for me to hear)... school demands just gets harder. Peer pressure gets harder...

It is truly incredible how a medication can just take the symptoms away. But for whatever reason it is not helping enough.

A few things to think about. Is his Guanfacine a 24 hour dose? For our son we had to add a second dose (so he gets more of the same medication) in the afternoon. I would also really encourage you to ( maybe you have already done this) get a 504 plan and try to reduce some of the school pressure. Try to figure out what exactly is making him get into or BE trouble in school. Sometimes this is hard to figure out, it may need to be conversation on his kid level about why he reacts. You may also need therapy where he has a place to express an and deal with his emotions.

Big hug for all you are doing and going through. Your are an amazing advocate for him.

We are always here for you.

Hope this helps..

[Imakecutebabies in reply to Onthemove1971]

Thanks for the reply. He is on Extended Release and has a 504 (actually an IEP now for speech only).

The difficulty at school is that there is often NO trigger for his actions, and they are not an emotional response--just an impulse. Classmate walks past him; he swipes at them (sensory related). Classmate is running for ball, he tries to beat him to it and ends up pushing past him and bowling him over--and doesn't even realize it. Gets accused of "punching" him. Etc. The other problem is his principal is an @&*&#^$(&*W^$ and just keeps telling me to "make sure he knows this is unacceptable".

But at home, he can't open his mouth without it sounding insulting. He's taught his 2yo brother to call people "poophead" and other such 7yo insults, screams "CHICKEN NUGGET!!!" at me at the top of his lungs whenever I ask him to do something, etc. Here, the triggers are being asked to do anything contrary to his desires, or his little brothers being loud or touching his stuff. He runs his mouth at school too, but that isn't what he gets in trouble for the most. I'm just so tired of all the negative vibes.

[Onthemove1971 in reply to Imakecutebabies]

To be honest... I know this sounds bad but this sounds like a maturity issue. This is how some boys are and then you add the ADHD on top of it. As frustrating as it is, can you focus on the rewards? If he goes 1 day without any issues he get X. Really pump that up and try to "ignore", the petty stuff. As far as the principal, you have 1/2 year left..

That is my thought.

[Imakecutebabies in reply to Onthemove1971]

Yeah... one day? lol yesterday I tried rewarding him for every hour... and reduced the time by 5 minutes each time since I know it gets harder as the day goes on. Prize for 60 minutes of being polite. Prize for 55 minutes of being polite. Prize for 50 minutes of being polite. He lasted until the 30 minute period, and then just. Could. Not. For the life of him. Last a full minute. It was a refreshingly nice 4.75 hours of the morning, anyway...

As for the principal, we have 3.5 years left... he's in 2nd grade.

What keeps me up is knowing he was this way in kindergarten (always screaming at me or his brothers and classmates) but NOT in first grade when we first started medicating him.

Thanks for the thoughts!

[Onthemove1971 in reply to Imakecutebabies]

The person that manages his 504 plan, are they an advocate for him?Do you think the reason it is hard for him is becuase his medication wears off? Can you get a dose that covers the whole day?

Big hug for all this..

[Imakecutebabies in reply to Onthemove1971]

The person who manages his 504 plan is his principal. His teacher seems to "get" him, but is not always able to deal with his behaviors completely in the classroom the way his first grade teacher did, and any time he gets sent to the office, things go poorly.

Given that the way he acts at home after taking his next dose isn't any better, I don't think the medication is wearing off.

[Onthemove1971 in reply to Imakecutebabies]

60% of behaviors should stop when you have the correct type of medication, the right timing and the correct dose. If this is not happening then if I were in your shoes I would try to change something.

That is very sad that the principal is controlling things. Just remember, everyone has a boss.. if you need help.

One last question, what does your son say about his actions? Not right after something happens but when you talk about it?

[TnMommaBear in reply to Imakecutebabies]

He could be on an IEP for OHI (other health impairments) then they’d have to monitor him and make a goal to improve.

[Rosey7676]

I like the previous response very much. Just curious, what is the prescriber’s opinion of all of this? I do very much agree that if you do not already have a 504 plan in place, you should request one immediately. I am happy to have a follow up conversation about that too if you would like. It’s what i do for a living.

My experience with G is that we hit a sweet spot with 2mg and then thought we needed an increase similar to you, but when we went to 3 we experienced the opposite effect of what we wanted, the emotional dysregulation, anger, physicality. It was awful and so we went back to 2mg and looked at other medications . It seemed like 3 was too much and totally backfired. We did try an am and pm dose but that didn’t work for my son. We ended up adding a new medication all together. But if course the medications in and of themselves are just one piece of the management puzzle., The school support and counseling or coaching piece together with medication is really necessary.

[Imakecutebabies in reply to Rosey7676]

Thanks for the reply. He does have a 504 in place, although I often have to remind them to follow it--support at school is very inconsistent and not done with much understanding of his actual condition. I haven't spoken to his psychiatrist again yet; I was trying to gather questions first. Sounds like I should ask whether going past 2mg may have been too much for him.

[Mamamichl]

Guanfacine didn’t work for my partner or his first born. My partner felt light headed, and my stepkid actually feinted. Guanfacine is first a blood pressure medication so it lowers blood pressure, so it’s harder to get escalated.

What did help my stepkid in elementary school was going into a special education classroom for behavior. I was reluctant because usually they fall behind academically, but this was a good classroom and they helped my kiddo with coping strategies and transitioned him back into mainstream in 5th grade. He’s now in 9th grade doing well in mainstream. His biological mother refused the medication route with adhd, but he has anxiety meds that help tremendously.

[Imakecutebabies in reply to Mamamichl]

Thanks for the reply. I knew it was a blood pressure medication but never made the connection before about why it was supposed to help. That makes sense.

My son was tested for special education in kindergarten, but didn't qualify for a special ed classroom because of his high intelligence and academic performance.

[arrh121]

Is this immediate or extended release? Our son (also 7) maxed out at 1.75mg immediate release (split into a morning and nighttime dose) and started to have negative effects so his psychiatrist switched him to 2mg extended release in the morning which has much less of a pronounced peak and valley. It has worked better for him. He also takes atomoxetine and the combination has worked well for him.

Might be worth asking your doctor about that if that's your situation.

[Imakecutebabies in reply to arrh121]

Thanks for the reply. He is on extended release.

[simplething]

This may sound redundant to some of the other posts but I agree. After trying immediate release and extended release, Extended release in the morning worked the best for my 12 year old son. Also, a higher dose than 1 mg for my son had more negative behavior and he was so tired.

Not sure if anyone else have experienced this but when he was switched to a generic form, the ADHD effects were shorter lived and more talking out and acting up was seen. Put back on non generic and much better again. We’ve seen this too with other meds he has been prescribed.

[Imakecutebabies in reply to simplething]

Thanks for the reply. He is on extended release. I'll have to check whether it's generic--I think it is.

I'm curious that your son takes it in the morning--our psychiatrist said that it caused drowsiness about 6-8 hours after taking it. We had been giving it at bedtime and he couldn't fall asleep, and she told us that and suggested we give it after school so that he'd be tired right around bedtime. I've actually been wondering if we're giving it too early and making bedtime harder for him due to him being tired too soon (bedtime is rough). If you're giving it in the morning, does he not experience a crash of fatigue right after school?

[simplething in reply to Imakecutebabies]

We too first tried it at night because he already took meds for hypothyroidism in the morning and didn't want to have any interactions. However, like you, my son would not settle down at night. Changing him to the morning has made a huge difference. He takes it about 7 am, is smooth until about 4 pm when he tends to be a little more tired and irritable but not a problem. (I have read that some kids take a mild stimulant to get them through this stage and homework, but I haven't needed any more.)Now sleeps so much better at night. Infact, the better sleep at night is also really helping. Think of how more irritable we are without sleep, now add in ADHD and his age.

Hope you too find relief.

[STARTwHello]

We are really confused by this med too to be honest!! Our 7 year old started it last Fall in kindergarten. It was compounded into a liquid because at the time he couldn’t take a pill. In some ways it does help him but figuring out the peaks and valleys is weird! We switched him to a pill and figured out higher doses make agitation/aggression worse. We think it actually peaks at 2-3 hours and at that time he can be very irritable. We’ve slowly lowered his morning dose from 2mg down to 1mg. We are also trying Abilify right now but are unsure on that one as well.

I’m not sure I have much to add to help but more to say we are feeling the same way!

[Imakecutebabies in reply to STARTwHello]

Thanks for the reply. Glad to know we're not alone on the journey through the fog.

[soh777]

Hi, not sure if this helps but our boy was 7 when he started going sideways. He was alway ODD, always but at 7 there was a quick spiraling down to serious anger and aggression from out of nowhere, and calls from the principle etc etc. Started on G IR which wore off in a few hours and was not too helpful. With ER and getting to 3mil per day, morning, afternoon and evening things greatly improved. About a year now and I think things are about 90% better. Hoping it continues through the years…..

[LuB33556]

We have had exactly your experience. Our boy is 10 and each 8 weeks we needed to up it....1 to 2 to then 3. 3mg has been amazing for months, and now suddenly total anger and emotional overwhelm for him all the time. He is like a lit fuse. ...😔 Nothing else has changed in his life. I think we will titrate down to 2mg again, although it doesn't help his extreme hyperactivity and vocal tics as much.

Our boy is autistic with ADHD and TS, and chicken nuggets is one of his favourite tics too. High five xxx good luck, thanks for sharing and keep going x L from UK