Short-acting Guanfacine

[WTLNT]

Our daughter started the Tenex, short-acting Guanfacine because with her high anxiety, she cannot swallow the bigger Guanfacine smaller pill. For three days on the short-acting Guanfacine, things were so sweet. She was sleeping better, (9pm vs. 2am), calmer, regulating her emotions, not having emotional outbursts, answering questions, responding to instruction, etc. By Day 4, she had trouble falling asleep again, Day 5, had a mild outburst and by Day 6, was completely emotionally dysregulated, and had problems falling asleep again. She actually said “it’s not fair” that she can’t sleep which broke my heart. Has anyone experienced this? Please note: she started at .5mg and will go up to 1mg this week.

[WTLNT]

**She is 8.**

[warriersm]

I know when trying meds like these they may work at first and then it’s as if it’s the same as before. My son went through it it’s normal he’s still going through it lol. Have you tried melatonin 30 minutes before bed?

[arrh121]

My son (also 8yo) was on 1.25mg Tenex (given partly in the morning and partly at night) for a couple of years with some success until he experienced some negative effects (very bad dreams and even hallucinations).

We switched him to the long-acting (he's on 2mg) and the side effects have gone away. The generic guanfacine ER we get is quite small. He had trouble tolerating more than 1.25mg of Tenex but has no major issues with 2mg of the long-acting, maybe because of how it's absorbed differently.

He's always had issues getting to sleep so he takes a very small amount of melatonin (one-eighth of a 1mg gummy) about 30-45 minutes before bedtime which has helped us.

[Genetic in reply to arrh121]

Ding Ding that’s the key…..metabolism and absorption rate imo. Grandma nurse and hubby raising grandson since birth. 8 in October. He tried guanfacine at night and fell asleep for almost an hour next to his desk and was listless in flag football the next morning. Stopped it. Unfortunately trial and error seems to be the norm with theses types of neurological conditions. Bodies are growing and changing constantly. Different “switches” turn on all the time. Ugh 😩. Our children did not display any behaviors as he has shown! We are at our wits end! He was also was a NAS baby. And delivered in distress and withdrawal. Never in NICU. Routine is crucial. He needs water (shower or bath literally every night). Got down to no bath after 830pm extreme latest. I could go on and on; like everyone here could. 😣.

I’m seeking psychiatric medication management and hopefully will get genetic testing done to determine best treatment.

Hang in there and taking parenting classes help you to think differently as well. Positive Parenting, Parenting Solutions, Raising a Thinking Child. Just to name a few in WI usually free via a UWO extension office. Very educational.

Blessings-Stacey🥰

[Auggie123]

It can take a bit to get the dosage in the right place. The other thing about these meds...it's only part of the picture...they can help but not entirely. The other part is skills... finding the right therapist for your kid to help them build the skills to cope with their struggles. Could be OT, pragmatic speech, etc depending on what your kids exact struggles are. The right therapist can also help you as a parent incorporate the right strategies into home life. In my experience- the meds work best when used in conjunction with the right therapy. "Pills and Skills". Good luck!

[marinecyan]

I am not a doctor but 11 yo my son takes Guanfacine (4mg) and it makes him more tired. My (uneducated) guess would be that your daughter's body is just adjusting to the medication so the benefits wore off.

Our psychiatrist, who is very careful with dosing, said that most kids - even younger ones your daughter's age - don't often see a benefit from Guanfacine until they get to 3mg.

[SunshynnSeas]

Our experience is with extended release not short acting, but I also found the benefits I saw eventually seemed to be less profound. We did increase from 1mg to 2 after some time and my son also requires 2 mg of melatonin 30-60 minutes before sleep.

[Imakecutebabies]

We've only tried the extended release, but we have noticed that its effects tend to be magnified the first few days. It's supposed to take several weeks to be throughout the bloodstream; our psych always says to evaluate it after 3 weeks. But usually we see dramatic change for a few days, then change that is less dramatic but more the norm. We also don't see much different after 3 weeks versus 1 week.

In your case, it sounds like her body responds to it but may need a higher dose to maintain the response? This is not medical advice lol.

Also, we found out the hard way that it can take 6-8 hours to make them sleepy, and giving it at bedtime worked horribly. We switched to giving it right after school. I don't know how that would translate with the short acting.

Finally, perhaps see if different brands have different size or shape pills? Our extended release pill seems quite small. I had him practicing on mini M&Ms and I'd say the pill is smaller than the M&Ms were.