juls Posted October 27, 2007 Report Share Posted October 27, 2007 Just curious, my ds began verbal tics at age 5 and then a few others were added. He is now almost 9 and I was just dwelling on the fact that his set of tics has never changed or morphed in the way that I've read about for people with TS. Is this an odd presentation of TS, or do others just stick with the same tics too? He has a verbal "hmmm" tic, a little hum, an arm above the head tic, a scratching tic and a compulsion (I think this is a compulsion) to scratch something after someone points at it. These are all very mild and with supplements they even went 98% away about for 6 months. They came back mildly this summer, perhaps due to chlorine from swimming, and have stayed around. But it's alway the same set of tics and it's been this way for years. Anyone else with this experience? Just wondering... Juls Link to comment Share on other sites More sharing options...
faith Posted October 27, 2007 Report Share Posted October 27, 2007 Juls, Well, my son has sort of had the same type of ticcing, although I have seen small bouts of other things when younger, his main one for about three years is a vocal (started hmmm, then could be a grunt or ahem, and when milder, like a ckkk throat clear. But that always seem to be the one I can't totally shake. Also his eye twitching could be a blinking or winking type thing, and that comes and goes in bouts, but for the most part is his tic that I have to watch for. As I said, I have seen small bouts of neck stretch and head shake (this was before I persued alternative treatment via this forum and naturopathic/DAN doc recs. But the vocal and eye are his main ones, but the eye comes and goes, so I am still investigating. Does your ds always have those tics you mention, or does it come and go? Have you tried various health strategies and dietary restrictions, etc. to see if it has any effect? Faith Link to comment Share on other sites More sharing options...
juls Posted October 27, 2007 Author Report Share Posted October 27, 2007 Juls,Well, my son has sort of had the same type of ticcing, although I have seen small bouts of other things when younger, his main one for about three years is a vocal (started hmmm, then could be a grunt or ahem, and when milder, like a ckkk throat clear. But that always seem to be the one I can't totally shake. Also his eye twitching could be a blinking or winking type thing, and that comes and goes in bouts, but for the most part is his tic that I have to watch for. As I said, I have seen small bouts of neck stretch and head shake (this was before I persued alternative treatment via this forum and naturopathic/DAN doc recs. But the vocal and eye are his main ones, but the eye comes and goes, so I am still investigating. Does your ds always have those tics you mention, or does it come and go? Have you tried various health strategies and dietary restrictions, etc. to see if it has any effect? Faith Link to comment Share on other sites More sharing options...
juls Posted October 27, 2007 Author Report Share Posted October 27, 2007 Faith, I've had my son on a host of supplements after learning so much from these boards. From Jan to July his tics were completely gone with the exception of a two week stretch in March that directly followed three days when my son hide his supplements instead of taking them! That hasn't happened again. When the tics returned this past July, they were the same tics he's always had. They are still much milder then before we started supplements though. I'm not sure why the supplements aren't doing the trick anymore, although I'm sure the tics would be much worse without them. My sons tics always seem much worse in the summer and fall though. I was just thinking it odd that his tics really don't morph into others. They wax and wane but the same group of tic are always the ones he has. Julianne Link to comment Share on other sites More sharing options...
Chemar Posted October 28, 2007 Report Share Posted October 28, 2007 Hi Juls if he has a TS diagnosis then this doesnt surprise me. Apart from in the very beginning when my son's tics first manifest, and also during the year he was on those meds, for the rest his tics, tho waxing and waning characteristically, have always been pretty much head neck arm tics and a group of vocals. even when he is in seasonal or lunar waxing, or is triggered by something, it always seems to be the recognisable tics that appear. However, during that year on the meds I saw tics manifest in him that were very very different Link to comment Share on other sites More sharing options...
juls Posted October 28, 2007 Author Report Share Posted October 28, 2007 Thanks, that was exactly what I was wondering. I had just read a book about TS that talked about how the tics change and I was curious why our were so static. Perhaps this is not uncommon when meds are not used. Juls Link to comment Share on other sites More sharing options...
faith Posted October 29, 2007 Report Share Posted October 29, 2007 Juls, I am wondering the same thing about why our regimen isn't working as well as in the past. We'll have some good success, and then things start falling apart again. I could be wrong, but I always have the feeling that certain things, wether it be allergies, intolerances, deficiencies, etc. are somehow directly related to certain types of tics, and I think I have put this to others here before. Like the vocal is somehow related to dairy or whatever, and the blinking is some other irritant to him. I don't know, but I think a few others here have replied that they felt certain things triggered certain tics for them. What do you think? But, right now, I just don't know anymore, my son is little out of wack right now, and we've already started with the Halloween goodies -- heaven help us, this is not gonna be a good month! Faith Link to comment Share on other sites More sharing options...
michele Posted October 29, 2007 Report Share Posted October 29, 2007 Our tics started with the eye blinking and chorea finger movements then went to finger cracking against the face and back, one time he was bending down and cracking them on the ground, then toe cracking up his tip toes. They are always even and rhythmic. One side then the other. The same number on each side. I notice alot of parents say the tics started as eye blinks. Ours have come and gone and come and sometimes last longer then other times. Anxiety, food sensitivities, screens and illness exposure seem to exagerate them. What is the longest your tics have been present? Michele Juls,I am wondering the same thing about why our regimen isn't working as well as in the past. We'll have some good success, and then things start falling apart again. I could be wrong, but I always have the feeling that certain things, wether it be allergies, intolerances, deficiencies, etc. are somehow directly related to certain types of tics, and I think I have put this to others here before. Like the vocal is somehow related to dairy or whatever, and the blinking is some other irritant to him. I don't know, but I think a few others here have replied that they felt certain things triggered certain tics for them. What do you think? But, right now, I just don't know anymore, my son is little out of wack right now, and we've already started with the Halloween goodies -- heaven help us, this is not gonna be a good month! Faith Link to comment Share on other sites More sharing options...
patty Posted October 29, 2007 Report Share Posted October 29, 2007 Faith & Juls, Tics & TS tend to wax & wane. Do you notice that your son's waxing cycle is longer apart, last shorter period of time and less intense as you are treating your son using alternative treatments? It does seem to me when my son start a new treatment, he tends to get more symptoms for the 1st couple of mos then taper off to almost no symptoms. However, sometimes i wonder if this is the wax & wane cycle?! The only thing that helps almost immediately is epsom salt bath, magnesium and magnesium creme. Thank God for this forum & everyone who is so willing to share with their knowledge & experiences. Pat Link to comment Share on other sites More sharing options...
Calicat Posted October 29, 2007 Report Share Posted October 29, 2007 Hi Faith, I do feel that my daughter's tics relate to certain triggers (sometimes... not always). When the eye winking one started, she complained of her eye feeling "sticky" so maybe there was something there bugging her. Her throat clearing could be allergy related because she complains of it feeling extremely tickly, and I know that feeling well myself. Now she has started "stretching" her throat by making an "o" with her mouth... I don't think this is really a tic (yet)... she is doing it to try to lessen the tickly feeling. But I see how it could become a tic, or at least look like one. Her throat clearing has started up again in the past week, though not as intense as it was the last time around. We'll have a period in the day that is maybe 4 times a minute for a while, but then is milder for much of the day (as compared with around 20 times a minute last time around). I do believe our program of supps and restrictions on artificials keeps her milder. But the throat thing had me worried, so I went through the piles of notes I've made while searching for answers, and the next supplement that jumped out at me as making a lot of sense for my daughter in particular (based on symptoms, diet--she will barely touch meat, etc) was Taurine. So I got some, gave it a try, and noticed IMMEDIATE (overnight) improvement with one dose. She went from multiple throat clearing to NONE throughout most of the next day, until evening hit. I am wondering about dose, though. Is 500mg too much for an almost-six-year-old? Sorry if I'm hijacking... I meant to respond to Faith, and then the rest of it just poured out! Thanks, Calicat Link to comment Share on other sites More sharing options...
juls Posted October 29, 2007 Author Report Share Posted October 29, 2007 My sons tics were at there worst a year ago. He was clearing his throat all the time and loosing his voice from it. His arm tic was also bad at this time. The severity of the tics was becoming very worrisome to me. We played around with supplements adding them bit by bit. In January I added L-Carnitine along with vitamin C to what we already had in place and the tics all disappeared quickly. It was amazing! This was tested in March when he stopped all supplements for three days and all the tics came back strong until he was back on the supplements for two weeks. Then the tics disappeared again until summer time when they came back mildly. I think chlorine is the trigger but he loves to swim so I'm not willing to stop the swimming. Here it is Oct and the tics have still not disappeared, but they are so very, very mild compared to when he is off the supplements. They are not a big concern at this point. I do still tweak his supplements in hopes of lessening some of his OCD tendencies and mood issues. Link to comment Share on other sites More sharing options...
airbucket Posted November 5, 2007 Report Share Posted November 5, 2007 Interesting question posed here. When my sons tics started a few yars ago it was a vocal grunt, non stop at that. I had no clue what it was. It was then accompanied by what i really did NOT think was a tic - compulsive touching of everything so that it was even. In other words, if my son were walking through a hallway he had to touch both egdes of the wall and if he did not do it "right" he had to go back and touch again. He also had ot do this with his elbows in particular. I thought it was an OCD as he has always been OCD-like. That tic lasted a long time. Then i think the tic went to what we see mostly recently, a shoulder shrug, or rather bringing his chin to his shoulder, one side then the other. Throughout all this he has had the wierdest "tic", which is the non stop need to have things touch his ears and eyes. He needs us to put our mouth on his ear, sometimes blow on it sometimes not, or put our mouth on his eyes, one at a time. Sometimes that is not satisfying enough it seems and he needs to rub his ears on our face or rub his nose on our face. I have no idea if this is a tic, he asks for it all the time. The other tic we see here and there is the head-bob. Now its mild, like he is saying yes, but a month ago it was so violent he was causing injury to his neck. Occassionally we see a jumping tic, where he has ot kind of skip a step when he walks, look like he is doing a jig. My son was removed from abilify 2+ weeks ago and now is only on Inversine, a multivit with minerals, mag with calcium and fish oil. The tics have all but dissapeared, occassionally when he is relaxed at the TV he will do his nod tic or shouldler to ear tic, but its so mild. What has gotten exponentially worse is his behavior and mood, he acts like someone with a major mental disorder like bipolar or something. I have no diagnosis for him other than TS though, but he is out of control and getting kicked out of one class after another. I cant wait to try more diet restrictions and other supplements. Ironic though that the tics are the least of our worries now! I would not say my son has had any totally new tics over the years. They seems to be the same or variations of the same, so i dont think that is wierd. Best of luck as always to everyone! Link to comment Share on other sites More sharing options...
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