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Everything posted by Jason_DFW

  1. My son was also prescribed Guanfacine (Tenex). The recommended dose for his size is 4mg per day, however, we never progressed beyond 1mg in the AM and 1mg in the PM for the non-extended release form. That dosage along with magnesium citrate and B6 vitamins have done the trick. Tenex can have some side effects which we hoped to avoid, and so far so good on the lower dosage. The ADHD symptoms which arrived around the same time as the tics have greatly diminished and the tics are very manageable, at times gone altogether when not super amped up during sports or extremely stressed. Based on our results, and of course everyone is different, I would have no problem recommending the non-extended release of Tenex / Guanfacine.
  2. Sorry for the delay. The B6 is the Nature Made brand and the Mag Citrate is some brand I found at Whole Foods. I'm sure any mag citrate will be fine.
  3. Here is what is working pretty well in managing my 14 year old son's (5'9 and 180lbs so adult size) tics. 1mg guanfacine tablet in AM and 1mg in PM before bed. With his size he is authorized to take up to 4mg per day, however the tics are controlled enough with 2mg that we want to avoid potential drowsiness and weight gain that can be a side effect. 100mg B6 tablet in AM 200mg magnesium citrate tablet in AM and 200mg in PM before bed. We used Natural Calm for a while with good success, however my son hates the taste of the powder and the Natural Calm gummies became non-existent due to some kind of manufacturing issue by Natural Calm. The tablets seem to be doing the trick, so will not return to Natural Calm. We tried other magnesium types, however citrate appears to be the correct type of mag, as the other types had limited to no impact. We try to avoid artificial colors and flavors when possible, but otherwise he pretty much eats what he wishes. He is very active in sports and tics big time when playing sports, but that's when the dopamine is really flowing, so it's expected. Otherwise, the tics are very slight with this routine.
  4. After being a year into the tics, neurologists, evaluations, etc I can tell you this. I too was WAY more worked up about the tics than my son. It took him telling me to chill out and that he's fine. Don't go off the deep end changing everything in his life (food, gluten, etc...) unless there is credible evidence it will absolutely help him AND he agrees with it. My son HATED all of the gluten free crap and told me he'd rather tic than live like that. On guanfacine now, very active in high level sports, very social, and his buddies are great with any tics that are noticeable.
  5. I would say with the combination of the vitamins and half dose of guanfacine we see a 70 - 80 percent reduction on most days. There are some bad days, where the tics are front and center, but not too often. He's almost 14 and I want for him to take responsibility for his meds, so we do go through periods where he might miss a day. If he skips meds for a day and plays hockey he's like a bobblehead on the bench and after the game, as dopamine fires. It's really noticeable! I'll record him and show the video to him as a reminder.
  6. Hi - My son began developing obvious tics just prior to his 13th birthday, and over the course of several months they intensified, morphing from one tic to another, never knowing what will be next. They started with the shoulders, then the blinking, some sniffling, grimacing, crossing of fingers, head rolls, etc... Then came the reports from school of lack of focus and grades dropping. We went immediately to watching the food intake, artificial colors, etc... I went nuts, throwing out food, buying gluten free and all sorts of crap from Whole Foods. We started Natural Calm, B6, and eventually was prescribed Guanfacine by the neurologist. After months we finally reached a point when my son made it clear I was way more worked up about this than he was and that he's fine. Frankly, I was stressing him out. He hated all of the special food. To make a long story short, we now do Natural Calm gummies morning and night. He takes a B6 and 1MG of short life Guanfacine morning and night. We watch for artificial colors and flavors and try to avoid, but don't do the gluten and dairy free approach. He plays sports at a high level, so we withhold the Guanfacine on game days, as it can make him a bit tired, and it seems to work for him. As an athlete he tries to eat fairly well. The Guanfacine, even at the low dose, has helped with school. He is comfortable telling people about the diagnosis of Tourettes and even pokes fun at himself. His buddies are for the most part great about it, only 1 kid at school picked on his condition, and toward the end of the school year my son reached his breaking point about the teasing and dropped the other kid. Kids rallied behind him afterward. He's in a really good place and the tics are under control, for the most part, but are still there. I know there are kids with far worse tics, but I'm convinced that doing just enough without heavy meds to control the tics and getting to a place where my son is comfortable in his skin has made all the difference. This is harder as parents than it is on him. Anyway, that's our experience.
  7. We've backed off B6. Have attempted to introduce B6 twice now, in addition to the magnesium citrate, and within 2 days in each case the tics noticeably increase.
  8. On Sunday, we reintroduced a multivitamin and on Monday a B6. By Tuesday evening I noticed an increase in tics, which I understand may come and go, but it was enough to warrant backing off the multi and B6 to see the impact. Going to give him Mag only for a couple of weeks. If the tics stay down may reintroduce only calcium and wait another couple of weeks.
  9. We also started our son on magnesium, Natural Calm, beginning this past Friday night. We also asked for him to reduce video games to no more than 4 hours per day. While we may be reading too much into it, it did appear this morning when he left for the school the eye blinking and grimaces have been reduced. Again, very early in the process so we'll see... Also planning to introduce B6 into the mix.
  10. I am struggling to come to grips with the fact that I am suddenly having to wrap my hands around this issue, when it all seems so sudden. We can use some guidance and next steps and how to help our son move forward. Our son has just turned 13 this month. He's an active young man, who plays sports at a very high level. About a year ago we started noticing a sort of shoulder shrug. Not too frequent normally, but at times 1 or 2 over a 5 minute span. About 4 months ago excessive blinking started, and it has since become progressively worse at a rapid pace. I noticed last night that when his mouth is open he grimaces only slightly when blinking. Just this evening, when in a non-public setting and playing video games the grimace is very pronounced at the blink. My first call today was to our primary, asking for a reference for a neurologist and was quite surprised by his response, that we should instead take our son to the local children's urgent care immediately, as it could be an electrolyte imbalance or diabetes. We opted to pass on that, right or wrong, and start calling Monday morning in search of a pediatric neurologist. My wife's cousin has a son with TS, and after speaking with her all signs point to TS. What to do from here? I know that TS is usually not life threatening and can be somewhat controlled, but if diagnosed I understand we have a long road of education and therapy. How do we best help our son? How do we help him to understand he might face petty ridicule and teasing, and how to cope with that and remain strong? Any treatments that have worked well for your families and those to avoid? Maybe this is all premature, but my heart is breaking for him. Again, not for having to face a very manageable issue, but for my baby boy being thrown into an unfair situation that he must now learn to face in the midst of all of the normal hurdles of being a teen.
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