Guanfancine

[vvny]

Hi All

 

So since the lockdown started and homeschooling since March , my son's (11yrs) vocal tics have flared up like crazy where he is shouting all day. He was on guanfacine 1mg for tics for 6 months before March and it sort of helped him and we did not see much side effects at 1mg but since his vocal tics are so flared and we didnt want him to loose his voice , the doc asked us to increase it to 2mg at night. Now since we have upped it this past 3 days , his vocal tics still remain the same and he is so lethargic and sleepy barely able to stay up during the day. Has anyone had success using guanfacine for vocal tics without much drowsiness? Will the drowsiness pass with continued using ?

One other thing that might cause his vocal tics to flare could be the pollen , dust as he has a blocked nose almsot every night and its not a cold. So I think he could have some allergies and we are treating it with claritin and will add in few more supplements. 

I am really not sure which route to go anymore as his vocal tics are so flared up and we are already doing supplementss to help him and at this point nothing seems to help him and I am so frustrated seeing him suffer all day.

 

[Sheila]

Hi Vvny, I'm so sorry to read that he is having such major vocal tics.  We can see if anyone answers about guanfacine.

I'm wondering how is your son is when he wakes up in the morning compared to when he goes to bed at night?

And when do they get the worst during the day?  

How were things before the lockdown?

Hoping to hear back, Sheila 

 

 

 

[Chemar]

Hi Vvny

We never tried Guanfacine as my son had such bad reactions to all the meds we tried..... but I recall seeing a number of posts over the years about it...Try a search here of it's other names Intuniv, Tenex

The only thing that helped my son's vocal tics was l-Carnitine, short term use. It was recommended by his physician and it really helped.

Hope things stabilize for your son soon.

[vvny]

Hi Sheila/Chemar

Thanks for your messages. I am at a point where I really dont know what to try on him as there is nothing left to try. None of the meds work on him or have a bad side effect and he refuses to have it so I cut down the guanfacine to 1mg which is not helping. He hates feeling lethargic and drowsy. He tries his best when he can with cbt but he says its too hard. I just got his bloodwork done today for common markers just to see if he has anything going on which we don't suspect as he does not seem sick.

Before the lockdown and when he was at regular school his tics were at minimal. It all started after couple of weeks of school beign closed. He shots constantly all day and almost lost his voice. Its never been so bad for us. 

Chemar, I did try one day of 150mg of levocarnitine(he used to be on this back when his levels were low) but somehow I felt it made him tic and shout more so I did not try more than a day. I am giving him quercetin with b vitamins and C and zinc , magnesium and taurine as per bonnies regimen. The only supplements he is not having as per bonnie's regimen are the niacin and lecithin. Do you think adding these 2 with carnitine one at a time will help him ?

I am really broken down and already looking into deep brain stimulation surgery for him as I cant bear to see him suffer this way. We also tried the mouth piece(stent) but since his vocal tics were better past 6 months he did not wear it and now he has outgrown it and our dentist is not open to make him a new one.

Any other pointers are greatly appreciated.

[Chemar]

We used 500mg l-Carnitine daily for 3 weeks. My son had a very intense shout/shriek tic and it worked very quickly to stabilize it, and it actually never returned. I am not saying this will work for your son but just sharing what helped mine when we were totally desperate over the shouting   vocal tic.

I would say if you try it again, do it first before adding any niacin or lecithin as otherwise you wont know which he is reacting too...good or bad.

Do consider what Sheila asked re times of day and when the tic is at it's worst to see if you can correlate with any potential trigger at home setting him off, as opposed to when he is at school.

[vvny]

Hi Chemar

Thanks for the advice and I am going to try the levocarnitine again from today and will update you in a week. His tics are there constantly all day every few seconds. Nothing makes it worse or less. Also wanted to ask does Lecithin and Niacin make a difference since he is not on them ...?

[Chemar]

My son didn't react well to being given separate Niacin, but tolerates it in a multivitamin (He also reacts badly to B-complex but does still take some other B's separately eg Methy; B12 & P-5-P form of B6)

Lecithin is beneficial, but be sure the source is ok (ie soy lecithin is what we used but some people are not soy tolerant)

I hope your son is responding well to the l-Carnitine and gets relief from this vocal tic.

[vvny]

Hi  Chemar

I am going a bit slow on the guanfacine and he is taking about 200mg/day (weighs around 70lbs). The reason is I remember he had loose stools earlier when he had tried it couple of years ago. Its been 3 days now, I cant tell if his vocal tics sound better as he is still screaming all day. We had gone out yesterday for a drive and it was considerably less while we were out all day but again since morning today its back to being bad. 

Did you notice your son's tics get better before the 2 week while on carnitine ? 

[Chemar]

My son responded very quickly to the l-Carnitine for the vocal tic.

He was already on other supplements to help with his tics and having regular Epsom baths etc so overall his tics were down, then the vocal began, and we added the l-Carnitine

He was not taking guanfacine so I have no idea if that impacts the efficiency of the Carnitine.

Have you tried to sleuth potential triggers for this tic?

[vvny]

Hi  Chemar

He wakes up in the morning and starts ticcing right away all the way to the night ! Sometimes I hear him in the middle of the night as well. So there is no actual trigger I can think of! Its basically all day with some breaks in between when he is really concentrating on some activity. 

I have tried every possible thing on him from supplements, accupuncture, diet changes, mouth piece and nothing has drastically helped him so far. Till now his tics were not too bad and we were able to manage until March when the vocal tics kicked in so bad. The only thing I have not tried on him is neurofeedback which I am unable to schedule now due to covid.

He is currently on these supplements...Let me know if I am missing anything important. He was generally ok with the below with minimal-moderate tics for last few years until March when it all blew up!

Magnesium Taurate 500mg/day, Taurine 500mg/day, Vitamin C1000mg, l-glutamine 500mg, VitaminB6/B12/combination of all B(folate)P5P, DHA, COQ10, Ashwagandha, Quercetin to help with allergies, Multivitamin, Probiotics, NAC, Guanfacine 1.5mg,  now on Lcarnitine. I have also tried 5HTP , GABA on and off but always felt it made him worse so did not continue them. Also tried Valerian on and off, Skullcap ...

So I have tried lot of supplements, he was on antibiotics for 1+ year as doctors thought it was pandas but he only got strep once when he was 6yrs and never got strep after that. And his tics have been constant since then ...but manageable with few flareups. We manage his diet well, organic, gluten and dairy free.

Not sure what else would help him and I am definetly loosing all hope.

[geobrian]

Hi vvny. Have you had any success in the last few months? We are currently in a very similar situation with our 12 year old son. Vocal tics every few seconds all day long. We also tried Guanfacine with no improvement. We are now starting a trial of Clonidine. 

[vvny]

Hi All

So we have had on and off success on guanfacine wiht our 12 yr old son who suffers mainly from vocal tics this past year. He seems to be very sensitive to it even at 1mg and anything higher makes him super drowsy. He also has the dryness in the mouth a lot as a side effect. We recently switched to guanfacine ER or Intuniv from guanfacine IR or Tenex. Its been a week on it and I am yet to see if it helps him. If I ask him, he says the guanfacine helps him upto 20% with his tics at 1mg.