Positive results from Guanfacine ER 1 mg

[MyReese]

My now 9 yr old daughter was diagnosed with ODD around age 5 (took the Vanderbilt test), but did not take any medications. We tried therapy for a few sessions, but could not continue due to me switching jobs and she wasn't responding to it. She told me therapy wasn't going to help her. She was subsequentially diagnosed with ADHD inattentive with hyperactivity this year at age 9 due to getting into trouble at school many times (3rd grade was a huge struggle between her disliking her teacher and peer pressure). She took Focalin 20mg for the last month of school and only got into trouble a couple of times vs. a couple of times a week. We have also been doing therapy. Her therapist thought it might be time to discuss possible depression with the pediatrician. The pediatrician wanted to try addressing the ODD first before putting her on anti-depressants thinking her depression was stemmed from feeling bad about herself for the bad things she does. She has been taking Guanfacine ER 1mg at night since 7/8/23 WITHOUT Focalin and she seems nicer and easier to deal with. I haven't been making her take Focalin during summer camp, so she will eat and not lose any more weight (she had lost a couple of pounds). She's tall and very skinny and wasn't eating well and hasn't been in trouble thus far. I did get an e-mail from camp about her not eating. Anyway, has anyone had positive results from Guanfacine alone that lasted? I hope this isn't a temporary improvement, but she really seems to be acting better. I have seen a couple of post possibly contributing anger with Guanfacine.

[Imakecutebabies]

My son started on guanfacine last summer after a horrible year in kindergarten, and had a MUCH, MUCH better year in first grade. He would still do constant minor things due to the impulsivity but the intense anger and aggression and defiance was drastically reduced. He's starting to uptick a bit now over summer but I don't know if that's because he needs a higher dose or just because it's summer. He has never taken any other meds, but it was coupled with a very detailed positive behavior plan and he did slip a bit when they tried to do away with those extrinsic rewards.

[MyReese in reply to Imakecutebabies]

3rd grade was horrible for us. I'm praying for a better 4th grade year. My daughter absolutely despised her teacher too which did not help one bit! It's all so exhausting.

[Littleme2000]

Yes, Guanfacine XR at 1 mg has helped us too for our 7 y/o. it’s subtle, and the long acting is much better than the fast for managing mood swings, which I noticed on wear-off. He is also on Focalin XR at 5 mg, which really helps him in school. We are taking a break from Focalin over summer to help w appetite, but are keeping him on Guanfacine. Also seeing a functional doc which was really helpful in assessing right meds and genetic make up. Doc gave him Genomind test, which I highly recommend to save time, money and pain of figuring out right meds. Also has him on supplements, which are subtle as well, but I’m seeing progress. Hope that helps and good luck 🙏

[MyReese in reply to Littleme2000]

Thank you! We did the genetic test too.

[HeartChaser in reply to Littleme2000]

Thanks for sharing your experiences here. We’re new on the med path and working with a psychiatric nurse practitioner. My son is currently taking Guanfacine 10mg and we saw a little improvement in impulsivity, but we’re looking into treating anxiety and depression as well.

I’m curious who administered the Genomind test..?? What info did the results give you?

[Littleme2000 in reply to HeartChaser]

Genomind gave us some interesting insights into which medications would work based on his genetic make-up (whether he need meds now or in the future). For example, certain people with a specific gene pairing work better with an SNRI vs. an SSRI, which could be good for you to know if your daughter is coping with depression and in need of medication. Also tests for MTHFR mutation, which is good to know as people with this mutation have issues converting folic acid (which is in all fortified foods and most vitamins). Also with the ADHD specific test, it gave us guidance on the right meds (depending upon genes, people may do better with a methylphenidate or amphetamine). Also, gave insights on opioid response and recommendations to avoid. Lastly, our functional doc recommended an antioxidant "Sam e" for anxiety and it has helped. He and I are both on it, and I see a difference. Just a heads-up, it is not for people suffering from bi-polar or severe depression so should be discussed w your doc. Hope that helps!

[MarisaP0121 in reply to Littleme2000]

Hi my 6 year old son started Focalin XR 5mg actually today (fingers crossed) I also want to supplement as well. What supplements does your son take?

[Littleme2000 in reply to MarisaP0121]

I hope the Focalin is working well 🤞. We did extended release, lowest dose, and the XR formulation worked best for my guy to prevent mood swings and avoid unnecessary increase in dose (apparently docs like to try to increase dosage in meds if they aren’t working to pinpoint correct dose, but we tried XR formulation first, which was the right choice for us). We are working w functional doc, and he is on Sam e, zinc, B6, and omega 3’s. There is a great book called Nutrient Power by Dr. Walsh that I recommend. Wishing you luck and good vibes! 🙌

[MSCGS]

Hi, my 8 year old son started on guanfacine and it worked wonders for the behavioral difficulties the Concerta didn’t seem to manage. For a couple weeks we stopped the Concerta because the side effects and the afternoon crash were a lot and I was thinking the Guanfacine would be enough alone. After a couple weeks though, the Guanfacine wasn’t managing his symptoms enough and we added the Concerta back and it has been like the magic for us now. The combination is working amazingly and he isn’t having the side effects or crash from the Concerta anymore. It was definitely a roller coaster and I had all but lost hope about medication there for a bit but I can say now that 18mg Concerta plus 1mg Guanfacine (both extended release) are managing my sons adhd pretty much completely with little to no side effects. He is also long and very lean and in therapy. He has combined type adhd. Hope this helps and good luck to you and your daughter!

[MyReese in reply to MSCGS]

Thank you! I am leery of anything working long term. This has been going on for so long and I'm tired. lol

[Trying1978]

Quick reply here. Guanfacine made my son (7, ADHD) much worse. Weird, paradoxical super anxiety reaction. But seems to be helping with mood & anxiety & inattention/impulsivity w/ my daughter after a few wks (9, ADHD). Seems to give her more appetite, actually, but that could also be stopping the methylphenidate.

[Adhdmomof2]

We started my ADHD son (age 9) on Guanfacine ER 1 mg in March (he also takes Concerta) upon the suggestion of his therapist since emotional regulation challenges are among his most troubling ADHD symptoms. We did see a minor improvement and after a few months increased the dose to 2 mg. Now it really does seem to be helping a lot but I am not sure if that is partially due to him being on summer break since that is much less stressful than school. I am in the same boat as you, hoping this lasts and is not just a fluke! On a positive note, we have not observed any negative side effects, even with the dose increase!

[MyReese in reply to Adhdmomof2]

All we want as parents is relief for out kiddos and us. It's exhausting parenting these kiddos.

[Mamamichl]

our experience with Guanfacine was the worst. Because it’s a blood pressure med originally, our kids pressure went so low they feinted.

As for eating: my other kid is new to taking cyproheptadine. It is a sleep aid and hunger creator. She’s been eating constantly, especially when it’s bed time. It didn’t help her get TO sleep, but she sleeps so much better since taking the med.

[MyReese in reply to Mamamichl]

I do have concerns about blood pressure:/ I bet your kiddos were scared passing out. Darn!

[Mamamichl in reply to MyReese]

keep in mind, it only happens for some kids. I would check pressure regularly and if kid complains of being tired or dizzy, get checked. Otherwise, it does work wel for some kids.

[GoDukes]

I'm glad you are seeing positive results! I am about 7 yrs into treating my son for ADHD and he just turned 14. He used to be on Foculin with Guanfacine in the evening to help him with the comedown of the Foculin. It worked for a year or so but as we had to increase the Foculin with age, there were too many side effects. We tried other stimulant ADHD meds but ultimately decided that the stimulants were causing too much anxiety and anger in him. We switched to Straterra a couple of years ago which is a non-stimulant ADHD med and things are MUCH better. No anxiety/anger issues and no lack of appetite issues either. And no more need for Guanfacine. Certainly, meds work differently for everyone and you may have to try many combinations. We did. And then something may work for awhile and then be less effective as they grow. I believe the right meds in conjunction with him getting older and a little more mature has put him in a good place. Good luck!

[MyReese in reply to GoDukes]

My husband fought any type of diagnosis and definitely meds for a long time until it was getting bad at school. He thinks she was acting better prior to taking the Guanfacine, but I beg to differ. He hasn't been around much due to work and a hectic baseball schedule. I am hoping we can get along with just taking the Guanfacine once school starts too. The ADHD meds are not always in stock.

[MyReese in reply to GoDukes]

I was pre warned about possibly having to try different meds until we found one that worked. So far, just Focalin (increased dose twice from original 10mg. Was up to 25 mg) and now Guanfacine.

[GoDukes]

I'm sorry to hear you guys aren't on the same page. I imagine that can make things alot tougher. I was very skeptical at the beginning but did my own research and decided I needed to do whatever was necessary. No one will be a bigger advocate for your daughter than you so be prepared to do the research and bring it to the doctors and teachers. One thing that helped me come around to the meds was the idea that hopefully he would just need them while he was maturing. If the meds could help him stay engaged in school and develop good habits while he is young, then hopefully he won't need them when he's older. Trying to go back and fix things after someone is a teen or adult is tough. Habits are already formed.

[MyReese in reply to GoDukes]

So true! It is also sad to see a kid constantly feel bad about themselves for their behavior. They have impulse control issues, then feel bad after the fact.

[Knitting20projects]

Our son (12-ADHD, ASD) is on Concerta & guanfacine ER. He definitely needs the Concerta as he is too hyperactive and impulsive on guanfacine ER alone (we tried it alone over winter break during a severe Concerta shortage). On guanfacine ER alone, he gets into trouble nonstop and everyone ends up crying and his self esteem tanks. Guanfacine ER really helped with emotional regulation and a little with the rigidity of autism. So overall it’s been a real improvement. Because of his response, we are about to try our 9 year old daughter on it (ASD, ADHD, ID, major learning challenges because of inattention). She takes Metadate CD because we can open the capsule. We will need to teach her to swallow pills (sigh). She also has significant anxiety and I’m hoping that might improve a little on it.

[Pigeondrives]

My son started on guanfacine when he was 7 yrs old (in first grade). Did wonders for him and the teacher said that it was like night and day difference. Then in second grade we started to see the same problems again so switched to methylphenidate and that is working for him. Except for the loss of appetite issue.

For my daughter who was 6 yrs old it would make her very drowsy and she would be so sleepy even after sleeping 10 hours at night.

[Lanego]

my son now 11 has been on 1mg guanfacine for over a year. It has worked great for him. He couldn’t tolerate increasing to 2mg because his BP would get too low. He has low BP like me at baseline. He says it helps him focus, and when we stopped it for a few days we noticed he was so much more impulsive and wild. It took us over a year to find a combination of sertraline and guanfacine that has made an immense change in him and our family life. He couldn’t tolerate stimulants.

[MyReese in reply to Lanego]

it’s such a great feeling to feel calmness all around. I’m glad you found the right combo for your son. I’m sure enjoying my daughter at the moment. I hope this continues.