Guanfacine and incontinence?

[MNmom99]

Hi there our son in almost 9, we switched medications for my son due to bad side effects on others, he’s going on almost 3 weeks on 2mg guanfacine ER, unfortunately he’s been having issues with incontinence (random urine leaks) we’re ready to stop and move on to something else after we discuss with his Physchiatrist but wanted to know if anyone else’s child has had this at the beginning of taking this med and if it went away? And if so how long after? My poor baby is suffering enough struggling with his ADHD/ODD dysregulation sucks that this med is causing this too. My heart breaks for him and all the other kiddos that have to suffer through meds 🥲. Also sending hugs to the families out there that are struggling hang in there you aren’t alone ❤️

[Aspen797]

Our son takes guanfacine and finds it helpful. We didn’t see a problem with urination, but when we moved to 2 mg from 1 mg there were sleep side effects. We had to go back to 1mg temporarily and then adjust upward super, super slowly to 2mg to let his body adjust slowly.. 1/4 tab increases, over 6 months or more till finally at 2 with no issues. Not sure if slow taper would help with the urine though or if that is something to be concerned about. Good that you’re checking in with his md.

[MNmom99 in reply to Aspen797]

Thanks for reading and sharing your experience. 😊 we are seeing her tomorrow fingers crossed we can come up with a good plan.

[2ADHDkids]

A similar thing happened to my daughter (8 yr old) when we tried upping her Guanfacine from 1mg to 2mg. We learned increased urination can be a side effect. We then went back down to 1mg. Maybe the dose is just too high for your son? My 11 yr old just moved from 1mg to 2mg with no issues; but, she is 30lbs more than my 8 yr old.

[Speckled_frog]

We are just trying 1mg guanfacine currently (1 week in) & has been suddenly wetting the bed, after good period with this. I haven’t noticed any day time troubles

[arrh121]

My son (8.5yo) has been on guanfacine ER 2mg for over a year and it works very well for his behavior, and we've seen substantial improvement. But he does wet the bed more often than is normal.

For a while, he was wetting the bed ~2-3x/wk at night.

We were able to reduce nighttime accidents to one night every couple of weeks by (i) reducing his fluid intake before bedtime and (ii) reminding him to go to the bathroom right before he goes to sleep, even if he had gone 30 minutes earlier. We also use a mattress pad in between the sheet and mattress which minimizes anything getting through to the mattress.

Daytime accidents are rare but probably happen once every couple of months, though have never happened at school (more likely when we're in the car for a while and he doesn't have easy access to a bathroom).

I had previously assumed that his bedwetting related to his ADHD somehow, particularly that he is often rushing and doesn't fully empty when he pees, or that he doesn't want to interrupt what he's doing to go to the bathroom, but it makes a lot of sense it could be the guanfacine.

[MNmom99 in reply to arrh121]

Thank you for your input

[STEM_Dad]

There is a different non-stimulant ADHD medication which is also used to treat enuresis (the type of incontinence associated with bed wetting). It is atomoxetine, best known by the brand-name Strattera.

As an adult with Predominantly Inattentive ADHD, I was on atomoxetine for 3 years, and it did a pretty good job of treating my inattentive ADHD symptoms. (While I haven't had any issues with incontinence, as a middle-aged man who had previously started having to get up to use the bathroom in the middle of the night, I'll be honest that after I started the medication those nighttime bathroom trips decreased significantly. I wasn't taking it for that, but it was a welcome benefit. I don't know how well my experience would translate to how a child would respond to atomoxetine.)

Atomoxetine isn't for everyone with ADHD:

• Statistically can be an effective treatment for the majority of people who have ADHD, but that's about 70%, compared with how stimulant medications have an effectiveness rate of over 90%. (I got these approximate figures from presentations by Dr. Russell Barkley.)

• However, there is also a risk of unpleasant side effects. (I had to always take it with food, or I might feel a wave of nausea some time afterwards. I've heard from some people who experienced much more significant side effects than I did.)

• The newer non-stimulant ADHD medication Qelbree (still only available as the name brand formulation) is the same class as atomoxetine, but has been reported as working better and having less side effects, especially for children. However, I don't know if it has the same benefit for controlling incontinence.

~~~~~

I'm not proposing a change away from guanfacine. It certainly has it's treatment benefits. It has been used in combination with other medications to treat ADHD, but I don't know if it can be prescribed in combination with atomoxetine.

According to what I've heard from Dr. William Dodson and other ADHD experts about guanfacine (as well as clonidine, which is the same type of medication), it is especially known for helping with the emotional disregulation which can come with ADHD.

• Emotional disregulation doesn't just affect the behavior of the person with ADHD, but also affects how people treat them and how their own self-image. So, especially in formative years, this might be a very beneficial medication. (Coaching/counseling can help with developing a healthy self-image, but behavioral intervention can't solve all emotional regulation needs in the same way that medication might.)

[MNmom99 in reply to STEM_Dad]

Thanks for the info, he recently switched off the atomoxetine it was the forat non stimulant some also wanted to try the giants one,it wasn’t working for school and was making him more irritable, since this post he’s back on a stimulant (concerts) but those side effects include zero appetite and his growth slowed tremendously when he was on a stimulant b4 the atomoxetine but he can focus in school and seems to have more impulse control. I think we’ve ran through the majority of these meds in the past few years it seems to be basically be switching out one behavior or condition for another…

[Mamamichl]

I totally get having side effects that suck. my stepkid feinted in this med. it was originally a med to lower blood pressure. If his blood pressure is low, he may not be able to think about that part of his body or control the pressure of those muscles. We were able to stop right away with no issues. Though it’s not the same side effect, the light headedness went away after a couple days.

Since you’re having so many side effects, I recommend getting a gene sight test. Most doctors do them in house. I’ve heard it’s only in the USA though. It lists all mental health meds and how adverse of side effects they would have. It’s helped my family a couple times already. Zen hugs 🫂

[MNmom99 in reply to Mamamichl]

Thanks for your reply, yeah we have had a genesight test done which is why we thought this med would be ok, guanfacine one was in the green so I’m guessing his body metabolizes it ok but these side effects are bad. The stimulants show in the red but he can seem to focus best in school while on these but the side effects are next to zero appetite most of the day, so he hardly eats and we need to get creative on that part. It wouldn’t bother me as much if he wasn’t one of those kids that wasn’t as active…our son is moving and playing 99% of the day and is probably burning more calories then he takes in. We moved him onto concerta slow release we will just hope he pigs out at breakfast then give him meds. And make sure he has a big dinner as most of the day the poor kid isn’t hungry… It’s so frustrating, trading one bad reaction off for another… thanks for the zen hugs and your reply. 😊

[Mamamichl in reply to MNmom99]

It’s good to know that the gene sight isn’t perfect. Have you tried getting him to drink ensure or similar meal replacers when he doesn’t have an appetite? Glad I could be helpful some and thank you for your insight as well.