u/MotherofReefer

My 5yr old recently stopped taking guanfacine (his speech has regressed since starting) and started Qelbree. It’s been almost two weeks and it helps him in similar ways as the guanfacine, but he’s very irritable. I’ve seen the warnings for symptoms of possible suicidal thoughts. My son is not able to explain how he feels but he goes through multiple sporadic episodes of distress daily. I don’t think this medication is helping. Has anyone else tried it?

Hi everyone,
My son (5) has an appt this week for a med check with his PCP. He’s been taking clonodine for about 1.5 yrs now and it’s helped a lot for his sleep. Without it, he’s up at 3am every night and stays up all night. Doesn’t even take a nap through the day. He started guanfacine last summer to help with his ADHD symptoms. He use to take both at bedtime. At the last appointment, doc suggested changing his dosage/when we give the meds because both of those affect blood pressure. She also suggested changing the guanfacine to another drug if I thought we needed it.

Since then, we cut guanfacine dose in half and have tried giving it in the morning instead. He got a bad stomach bug recently and did not take the guanfacine for a week. Without it, he’s literally got the energy levels of a meth user. Constant stimming, A LOT of aggression, jumping on us, literally sprinting across the house all day long, yelling, etc. I can’t keep up with the energy and have zero tolerance for the aggression, we have a baby in the home too. When he takes guanfacine, it’s much easier to redirect/talk him down from fits, he’s more compliant, and overall much more calm. Without it, it’s like life is 100x harder for everyone in the home. My only problem with this is that since starting guanfacine, his speech has regressed a lot.

I spoke with his ST and she agrees on his regression. She said in the last year, he has not been able to meet most of his goals. He will finally get a real AAC this week. He’s mostly non-verbal, although before starting meds we were seeing progress. Scripting, singing, copying what he hears and sometimes giving us real responses. Because he cannot communicate verbally, I’m very hesitant to try stimulants right now. We tried Ritalin before the guanfacine and he got extremely emotional every time he tried it. And obviously could not communicate how it made him feel.

Has anyone else experienced this? Whether it’s with these drugs or another? Any suggestions? He absolutely needs his sleep and needs help controlling his ADHD but I don’t want to prevent him from progressing in his speech. Just want an idea of what changes we can make before meeting with doc. I know every kid/situation is different, I just want real life experiences from people who have been through similar things. Thank you in advance.