Guanfacine : Hi Folks, Any success... - CHADD's ADHD Pare...

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Guanfacine

BVBV profile image
BVBV
14 Replies

Hi Folks,

Any success stories on Guanfacine? My son is 9 years old, suffers from hyperactivity, impulsivity, and tics. Stimulants are no longer an option and after meeting with his new Pediatric Neurologist, he suggested trying Guanfacine next. We are on day 4, and will slowly titrate up in dosage. He also takes “natural” supplements as well.

Thank you!

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14 Replies
Onthemove1971 profile image
Onthemove1971

Our son takes this medication morning and might. It has been wonderful for helping with mood ad focus. Very successful. Our son also takes a stimulant. Both together are the perfect combination.

Good luck in finding something that helps.

BVBV profile image
BVBV in reply to Onthemove1971

Thank you!

SecretAgentIEP profile image
SecretAgentIEP in reply to Onthemove1971

Hi there, Can you share the dosage and type of medicine? After 6 months of trying different things,, so far, my 7 year old son seems to do best with 2 mg of Guanfacine ER at night and 20 mg of Vyvanse ER in the am but we might try adding 1 mg of Guanfacine in the am to see if that helps more.

Onthemove1971 profile image
Onthemove1971 in reply to SecretAgentIEP

Dose is something that is assigned by weight and height. There is a range and our son has always needed a higher dose. He is 6 feet and 170 lbs. So his doses wouldn't help you. The dose that would be assigned can be lowered and raised depending on his needs. Our child psychiatrist knows what is best and I follow their lead.

Hope your child does well on this medication, in 5 years no one will remember these trials. You will know when you find the right dose it is like magic. Of course there are still struggles, still failing grades and bad attitudes, but without medication ( at least for us) he could not be successful.

Best to you.

SecretAgentIEP profile image
SecretAgentIEP in reply to Onthemove1971

Thanks for the info!

bernerDad profile image
bernerDad

Just out of curiosity, why can your son no longer take stimulants? If it's because of an increase in tics, that is not usually a contraindication unless it is so severe that it is interfering with normal functioning.

Guanfacine is great but it is thought to be more effective for hyperactivity and impulsivity than with focus / concentration. Like Onthemove1971 mentioned, guanfacine is often combined with stimulants -- particularly in the afternoon and evening hours when a stimulant can't be used.

Is he on the immediate release (Tenex) or extended release (Intuniv)? I find that Intuniv tends to be a little less sedating and generally better tolerated.

I wish you good luck! Guanfacine (in either form) can be a very effective medication.

BVBV profile image
BVBV in reply to bernerDad

My son went through 4 different stimulants over a two year period (differing dosages, XR vs immediate release, ect). His tics worsened to the point that it greatly interfered with his daily life at home, school, and sports. They were pretty constant and repetitive and once he would cycle through a tic episode the next one would occur within 5 seconds to a minute. Next, his appetite greatly suffered, he would go anywhere between 6-10 hours without eating or drinking which also affected his mood negatively. There were some other side effects as well but those were the main issues. My son is on the extended release formulation, Intuniv, given once at bedtime.

Bootsie1 profile image
Bootsie1

My 15 yo daughter has had great success using Guanfacine 1mg extended release. She was unable to tolerate either stimulant molecules, even at the lowest dosage available. The symptoms that most interfered in her daily life were impulsively, RSD, and I’d say, just an all around kind of internalized hyperarousal.

We had a bit of a journey finding the optimal dosage and decided to do some genetic testing. The results helped guide us toward lower dosing as they indicated that she metabolized medication slowly.

Good luck!

greenmind profile image
greenmind

My 9 yr old son is taking Intuniv every night, combined with daily stimulants. This is a newer combo we are trying, but he moved from 1mg to 2mg Intuniv per night about a month ago. He started taking it because of his mood prior to the stimulants kicking in and after they wear off. He would be extremely angry, upset, mean - very difficult, and not himself. He has gotten better, but we also changed the stimulant so I can’t say for certain which would be the reasoning. He has had a couple of uncharacteristically hyperactive episodes at night - almost manic, which is new, but more manageable than the anger episodes.

I hope it is helpful for your son!

Lanego profile image
Lanego

Our 10yo son became more aggressive and angry on stimulants. Guanafacine has decreased his impulsivity, anger and activity. He's on 1mg ER but he will probably go to 2mg. Unsolicited he said he has noticed being able to concentrate more with intuniv.

MamaBear90s profile image
MamaBear90s

My son has been taking Guanfacine 1mg in AM and another 1mg in evening. Since he’s only 8 and can’t swallow the pills we crush them and serve in yogurt or pudding. It has a calming effect for him and we are still trying to find another adhd med to pair with it as he had a bad reaction to nortriptyline. He also didn’t do well on stimulants.

rnsrule profile image
rnsrule

Hello BVBV, I can 100% recommend Guanfacine to help with the ticks. My son is 12 years old and diagnosed with ADHD, Tourette’s Syndrome, and high functioning anxiety (as a result of school bullying). We only “discovered” the Tourette’s as a comorbidity after his ADHD diagnosis and treatment with a stimulant. Once his need to constantly move about, tap feet/hands/fingers/etc., basically his need to be vibrating in overdrive all the time was suppressed we noticed he had other “odd behaviors” and one looked quite extreme to us but he said it felt more like a relief or release to him. He had these audible noises one was a clicking noise around his front teeth, a throat clearing noise between the soft palate and upper throat and he would hum various tunes that only he knew and weren’t from songs he recently heard or ones we knew. His most off-putting “extreme”, to we his parents, was this head/neck tilt & crank maneuver. It looked like he was desperately trying to turn his head upside down and break his own neck; he did this maneuver frequently and always in his most relaxed state watching TV/YouTube/vegging out. The ticks were mostly under control, all but the throat clearing sound, when he was fully engaged in his favorite activities (ie. video games) or anything that completely held his attention. We spoke to his neurologist but they didn’t want to try anything new at that time because he was just recently diagnosed with Tourette’s Syndrome and his ADHD diagnosis was not yet a full year old, so they wanted to see if his current medication would eventually stabilize the ticks as well.I began working in their elementary school that same year, he was in 2nd grade at the time, and he eventually spoke up in the spring and told us he was being physically bullied by a student in his classroom. It turned out that student happened to be his best friend, he had a best-friend-bully! Anyway, there wasn’t a specific reason for the bullying but over time, the next 2 years it continued to happen and we believe only because our son is significantly smaller than his peers. We did put a stop to it but it’s ridiculous how school district’s state “zero tolerance for bullying” and yet take years and a police report to finally intervene. COVID school closure and the next school year being remote was the only relief he had from potential bullying. But once he entered 7th grade last year, he began to be bullied about his size nearly every day from the first day of school until he finally told us breaking down and crying at dinner, out of the clear blue completely unexpected because we weren’t even on the subject. Anyway, my point of this is that I wouldn’t take no or not yet from the neurologist because the last thing he needed in 2nd grade and on was to be bullied because of the ticks; working with elementary students I know how mean they can be long before they reach “clever, sly, and sneaky” middle school bullies.

I had him referred to an ADHD specialist who suggested a OTC supplement first, it truly helps with impulse control, I take it myself to help with my own ADHD issues. The supplement is called Inositol, it’s a B-vitamin, it cannot be marketed as a B-vitamin since it is one our own bodies produce naturally (what my research has found) just some people produce less than other’s. I take it in capsule form, and my son in a flavorless powder form mixed with applesauce or blended in a protein smoothie or anything that it can dissolve in and has a flavor; you can find it in many different forms and many different milligrams, too, but please speak with their doctor first to see if it’s a good fit for your child.

Our specialist then prescribed Guanfacine to help with the ticks. My son said he liked that the Inositol helped him feel like he could focus and stay on task with things and that his stimulant medication helped “slow his brain down” so he could actually think about something or concentrate. Most of the ticks didn’t bother him and he hadn’t yet had anyone tease him about them or hadn’t noticed it, but the throat clearing one was bothersome by bedtime because it would make his throat hurt by then. So, doc prescribed it and within a few days the neck thing stopped, the clicking stopped completely, but the throat clearing still took a dose increase before it too had stopped. Now, we only hear the throat issue when he is extremely-overly stressed (video games with his cousin via Xbox since they live in FL) and when he has encountered another bullying incident at school. He can miss a few doses, we DO NOT recommend that, and still not see the ticks until about day 4 (so missed 3 doses); changes in routine have caused he and us to become exhausted and forgetful at bedtime and I will not wake him to take his medicine.

A “bonus factor” to this medication if no one has told you, yet, or you have not come across it in your research of it is that it is also used as an antiviral medication. It is given to prevent people from contracting a virus, typically those whom are immunocompromised or geriatric patients/residents living in group homes and nursing homes where they live in close proximity to many others and/or sharing rooms. I learned this from our specialist about the start of the COVID pandemic when we were discussing the return to half day classes. He told us about the board of medical professionals and etc. he is part of had decided to prescribe this to their patients living in all of the nursing homes and group homes in the 3 cities they all work in. Many of the staff in those homes became sick with COVID, as did the residents that were not their patients, but only a few of their patients became ill but there was no COVID screening tests at that time, so they couldn’t be certain they had contracted that, some other virus, but knew one had a bacterial infection they were being treated for and did develop COVID symptoms. But what we have seen personally, my son had zero lost days of school due to illness, we had no cold viruses until our daughter returned to school, she’s older, he never caught them but the rest of us did. And a few days before school was out this past school year he had COVID symptoms, I tested positive about 5-6 days after he started having symptoms but I was also exposed at work 5 days in a row during that same time, my husband and daughter tested positive 2 days after I did but my son who had what looked to be the worst and longest lasting symptoms never tested positive. Only my daughter developed a fever, only I lost my sense of smell & taste. Anyway, I am rambling on now.

Yes, I can recommend Guanfacine to help with the ticks. I cannot say if it will help with impulse control since we began with the Inositol supplement first, then added the Guanfacine to help with the ticks, and he is still taking the Inositol. Hopefully this information will help you or point you in a good direction to research more about it. We wish your family the very best.

BVBV profile image
BVBV in reply to rnsrule

Thanks for your reply! I’m so glad to learn that it’s helped your son. I’m alsosorry to hear your son was bullied- kids can be so mean. My son is currently on 2mg and will probably move up to 3 or 4mg. Funny enough he does take another supplement that has inositol in it for focus!

rnsrule profile image
rnsrule in reply to BVBV

I am glad to hear that so far things seem to be working out, and you’re familiar with Inositol. My son has been at 3mg Guanfacine for about 2 years now. We keep being told that children who present with this type of Tourette’s Syndrome in such an early age have a tendency to grow out of it as they mature. I am so hopeful for his sake, but skeptical because things never seem to go his way.

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