lynsey

I had heard about Tenex through my friend, who had read about it online, and I certainly asked the doctor about it but at that time I don't think it was available in Canada yet, or it hadn't been approved by the Canadian Food and Drug Administration. Had it been available here in Canada, I would have tried it. The doctor always checked my sons' blood pressure at regular intervals while on Clonodine. Their pressure was never a problem while on Clonodine (i.e. it never went too low). Nor did they complain of anything like tiredness or dizzyness. Again, I've talked about my friend whose son was on a much higher dose, and his pressure wasn't a problem either, but he did have fatigue, which you might expect at higher doses. However, as you can see from the posts, Clonodine results seem to run the gamut. Everyone seems to take different doses, and the results can be anywhere from good to bad, and a whole range in between. If you read the literature on Clonodine as regards to treating tics, it is talked about as being generally a first-line treatment because of the low incidence of side effects, but it also can be the least effective out of the other meds available. My personal opinion (and it is only my opinion) is that since it seemed to be the medication to try with the least potential side effects, it was worth a try, because I knew I could always take them off without too much trouble. Other medications require you to titrate off very slowly. Certainly there are much stronger medications with more potent side effects, and people are willing to try them too, if they feel they must have relief. It is up to each individual family. I certainly felt Clonodine was worth a try, and it has been beneficial to us. Again, our sons doses were one .025 mg tablet, three times daily. Lynsey

Clonodine results vary greatly from person to person, just like TS varies greatly. Some people see rather immediate positive results, within a few days to a week. Some people see increased tics. Some people have more pronounced sedation or other side-effects. It is all dependant on the dose, and how your body may react to this medication, as in any medication. Some people see slow improvement in tics and other behaviours, over the course of a month or two. My TS doctor had told us you should give it a few months to really know. This is hard to do when you are looking for immediate benefits. My sons were on a very low dose for years and I noticed the benefits. Because it was low dose, there wasn't complete elimination of tics, but I believe it helped lessen their frequency and severity. If your children are like zombies on Clonodine, it could be that the starting dose was too high. We started on a micro-dose, and titrated up to our regular "low" dose over a two week period. Did you titrate up? Ask your doctor about trying a lower dose, and titrate up to it, and see how this works. Lynsey

Actually, that is a very good question myrose, I was wondering the exact same thing!!! Thanks for answering, Cheri, I couldn't figure out where my sent mail was either Lynsey

Try not to panic, although I know it's a monumental thing to ask when your child's tics seem to explode all of a sudden. You are doing all the right things to get her help. Until you decide what things you want to do to help reduce her tics (this is your foremost concern, I know), I think your next biggest concern is, how will she cope at school with these tics... What you have to do is speak to her teacher(s) right away, and the principal, and let them know what is going on. You can ask them to make special allowances for her so that she will feel more comfortable. Some of the "special allowances" that I requested at my sons' school were, allow them to leave the classroom to "go to the washroom" if they felt the tics were particularly intense, allow them to relax in the library for short periods of time, do not require them to sit for extended periods of time where they are expected to be quiet - for example, school assemblies (i.e. allow them to sit near the back or side where they can exit if they wish). If her tics are bad, you can keep her home for a couple days a week - work it out with the teacher where her work can be kept up at home during these absences. With the help and guidance of your doctors, and the ideas and suggestions of the people here on this forum, you will decide on what things you can try to help your daughter - don't lose faith, we've all been there at one time or another, and we've gotten through it, there is light at the end of this tunnel.... lynsey

I definitely feel that it is a good idea to let the teaching staff/principal know about your child's condition -(and I did) -, especially if you feel the teacher may misunderstand his or her behaviours or tics and think it is just a "problem" child or a child trying to be funny or get attention. But I always asked the teaching staff to respect my child's right to confidentiality, and not disclose to other students. The approach my friend had was to hold a general assembly in the school and talk to the students about her sons' disorder. She felt it was necessary to help her son and I would never judge her, or say my way was better than hers. We all as parents do what we feel is best for our child. My feeling was that her approach highlighted him as "different", when all they desperately want to do is blend in and be like the other kids. I'm not saying this would happen to any other child, but a very strange turn of events in her situation was that after the school staff and students bent over backwards to understand and make allowances for his many behaviours, he started to take advantage of this and really became a problem for the school. Even the son admitted he liked to take advantage of this special treatment. Again, this was one case, every case is different, every parent has to follow a road that he or she feels will best help their child, so I am not saying one way is better or worse.....just telling you my experiences.

Another thing I forgot to mention If my sons were doing a tic that I found a bit, shall we say, objectionable, or that I knew it would be noticed by other people, I used humor a lot to deal with it. I would point out to him what he looked like when he did it, usually in an exaggerated comical way that would get him laughing like crazy. Then we would both laugh about it, but thereafter he would make some attempt to modify his tic somewhat so it wouldn't look so "odd". You use your judgment if you feel the tic is really going overboard, or if it is something that is not noticeable to most people. So in regards to your sons smelling tic, you could use this approach and say, sweetie, it looks like your putting the food in your nose! You're getting stuff all over your nose!!! Can you smell things a little less obvious?" I am a Jim Carrey type of person so I probably would have acted out something funny for him to see, we would have both laughed like crazy about it, and he would have got the message but not feel bad about it. This way he can still relieve his "tic" but be a little more discreet about it. I've used this approach with my sons and it worked very well and, like most of them do, the tic eventually went away..........

Faith, you mentioned in your email that you were not ready to disclose to family members or others about your son's TS. I was the same way. Again, one of my friends (the one I was very close to, whose son had severe tics) - she had the opposite approach. Tell anyone and everyone, in the hopes he would be treated with compassion. In some cases it worked, but in many cases it backfired, and he was teased endlessly by many students simply because they knew - not that they noticed his tics necessarily, but anytime other kids got mad at him for any reason, it was always thrown in his face as an insult. He was very mad at his mom for this. She told me she regretted having been so willing to disclose it to everyone, but the barn door was open, so to speak. If they had not noticed any tics in him, or maybe only a little bit, boy - this admission sure opened the door for other kids to scrutinize him and make fun of him. Now this may not be the case for every child who similarly discloses his condition, but it sure was for my friend's son. They eventually moved and changed schools and she kept his condition more private, only those that needed to know, and even though some tics were noticeable, no one commented or made an issue of it. I also felt it was our private family issue, and particularly it was my son's private issue, and if and when he was old enough and felt comfortable enough to tell people, it would be his choice to tell - NOT MINE. For example, my brother and parents know about my sons condition because I trust them implicitly, and they are very compassionate. Did not tell my sister though, for many reasons, and told my parents not to tell her either Lynsey

Hi Patti I'm happy to answer any questions, don't apologize. I love to share what I've learned, and I love to learn what other people share! In short, my son basically grew out of his asthma. He got older, his airway got larger, his asthma diminished. It started diminishing around the age of 14. He's 17 and a half now. His asthma was a problem since he was very young, but not any more. Now, having said that, he has a problem with allergies and they are terrible. Over the years we've basically went through every allergy medication available, now this year he was on allergy injections - once a week for 16 weeks (but it really, really helped). His allergy symptoms are also a tic trigger. But I digress.... The medications he used for asthma were Bricanyl and Pulmicort. for Bricanyl info, see: http://www.astrazeneca.com/productbrowse/6_90.aspx and for Pulmicort info, see: http://www.drugs.com/pulmicort.html Dose was 200 ug for both. Because his asthma was so severe (he wound up taken by ambulance to emergency more than once - couldn't breathe), we saw the top guy for pediatric disorders. He prescribed, at the first sign of cough, to have him aggressively take his puffers - 2 puffs, 4 times a day. Then after a few days, diminish to 3 times a day, then 2 times a day, then his cough should be subsiding. And this regimen worked for him. Thereafter, his asthma episodes were less and were more easily controlled, and he didn't have to take the puffers on a daily basis, other then when he started coughing. The specialist told us that often the problem is that many GP's give patients puffers, but then under-dose them. They don't work effectively, or at all, if they are under-dosed, but many GP's are afraid to raise the dose. I didn't notice any increase in tics whatsoever with these medications. They worked well for my son. If I can help you with anything else, please feel free to ask! or PM me Good luck Patti, you sound like a wonderful caring mom, I hope my other email didn't sound like I was criticizing you being worried, because, I was exactly the same as you and probably much worse... I was the poster-mom for catastrophizing every little tic and oddity my sons had...finally stopped watching them other than to realize how beautiful they were Lynsey

My son (oldest) also had asthma which both caused a coughing tic, and compounded/prolonged his coughing. We had him on puffers for the worst episodes of coughing, and also when he had a cold which made his asthma (and therefore also his coughing, and coughing tic, worse). The puffers did help his cough, and therefore helped his coughing tic. But also, I found that giving him simple, basic honey lozenges to suck on, helped the coughing subside and therefore the coughing tic also subsided. He liked to keep pocketfuls of these lozenges with him at school when his coughing tic was noticeable to the point of embarassing him, and the teachers kept telling him to go get a drink. Obviously the honey lozenge coated his throat and helped diminish his urge to cough, but I also think the sucking of the lozenges sort of distracted and interrupted his cough tic as well, if that makes any sense. I don't know, I am just surmising, but at any rate it worked, and it still works for him to this day

Hi Faith After my sons started displaying symptoms of TS, (in kindergarten), I started noticing other children who had tics. You can't help it, once you are on the lookout for your own child's tics, you notice every other child that tics too. My husband called me "old eagle-eye". One of these children was a good friend of my sons'. His mother was frantic to find out what was wrong with him when he started ticcing. I gently suggested that he might have TS, she was afraid about this possibility but when she did some further investigating and found out he did in fact haveTS, she was relieved she could then start the road to helping him, knowing what it was. We forged a very, very close friendship and helped each other with information, doctors names, how to handle the school issues, and psychological "boosts" (we gabbed with each other every day to relieve our tension. It SO helped). I then discovered my neighbor's son has TS but his mother was unwilling to seek any help, she just wanted not to think about it and hoped it would "go away". Both of these children had much worse tics than my sons did. I learned a lot from each parent's approach. Each kind of approach has it's benefits. At first I thought my neighbor was a "head in the sand" type of person and she was not doing the most to help her child, then I realized, it was her way of coping. As much as I like to think I was this "uber-mom", who did the most investigating and helping with doctors, with the school.... ultimately I did see that all this focus on them, both with doctors and the school, was making them feel weird and abnormal. My youngest son actually said to me, "I don't want all these special allowances at school! I don't want to see any more doctors!! I want to be just like the other kids! They don't give a care if I tic or not!" Out of the mouths of babes....... Lynsey

Pat, I know how you feel, but you have to look the other way sometimes. My friend's son with TS had a smelling tic where he would want to smell her feet. I know it sounds odd and gross, and he was very funny when he did it - they would be sitting there watching TV and he would want to sniff her feet. She would give his nose a gentle kick with her foot and he would laugh, she got mad at him too, but eventually this tic "waned" like the others. Another friend I have whose son also has TS was sniffing his undergarmets (she told me in horror). So your son sniffing his food is really harmless, do you know how many people without TS sniff their food before they eat it? I myself did that for years because once I ate something that had gone bad (I can't remember, I think it was cottage cheese) and so thereafter for years I smelled my food before I ate it, and I don't have TS. If you take him to the doc. every time he has something you consider odd, you are really gonna make him feel like an "oddball". I learned this through experience. You have to overlook some things. If he smells something and gets salt or whatever on his nose, just gently point out to him he has something on his nose and to wipe it. You have to pick and choose very carefully which behaviors you want treated, and which you can live with, because otherwise your son will feel trapped, like he can't do anything, and yet he has to because of his disorder. This will make all his symptoms worse and he will be very unhappy. I'm telling you as someone who has gone through this, I learned from my mistakes! Lynsey

My kids get dark circles under their eyes when they are sick, usually with an upper respiratory infection. They've only had strep once in their life and I'm sure they had dark circles then too, but they always get them when they have a bad cold, or an ordinary sore throat, or the flu. I looked up dark circles on some medical site on Google, you may be interested to read: http://www.parents.com/big-kids/health/col...er-eye-circles/ and this one from the Mayo Clinic: http://www.mayoclinic.com/health/dark-circ...er-eyes/AN00423 lynsey

I watched an excellent National Geographic Special on Stress: Portrait of a Killer. Maybe I'm not exactly accurate, but I classify anxiety as a constant state of stress. It is very very dangerous to our health, and we need to learn more about it. See: http://www.nypemergency.org/moxiepix/b2_3.gif also http://killerstress.stanford.edu/ When it is aired again, it is definitely worth watching. One important thing I learned is that when we are under stress, it affects everything in our bodies. We don't produce hormones, we don't ovulate, it shuts down many of our normal body functions because we are in a state of fight-or-flight. It's probably one of the most damaging things we can do to ourselves. Wish I had seen this program years ago.

For my 2 sons, sicknesses would usually either start a tic (i.e. throat clearing) or make a tic slightly worse. I know your cycle of feeling "not again". But kids are going to get sick, so I got to learn to expect a new tic or two, or a slight waxing of one. My husband kept bringing me back to reality when I would wail, oh no, here it comes again! And he would say, "ya, so what, they're not that bad and they will go away, like they always do", which is what I needed to hear. And halloween candy may also intensify his tics, maybe not, but my feeling is, they have to be kids and enjoy life too! I didn't want my children to feel even more different by stopping them from enjoying Halloween. I just tried to go through his halloween stuff and remove the ones loaded with artificial color. It's been my experience, and I have 3 people in my family with TS, my boys are older now in their mid-to-late teens - my experience has been that a number of things might trigger or intensify their tics, but if you remove those things, their tics either subside or go away. That means, when his sickness is better, his tics related to that should subside. Any tics related to eating his candy should also subside later too. I think most moms panic when they see a new tic, I know I did it too! But it really does no good, I've learned, except ruin my own health, and things never got as bad as I anticipated.

This book sounds wonderful! I have put my name on the list to read it, at our local library. For those of you who want to read a review, see here: http://www.usatoday.com/news/health/2008-1...on_N.htm?csp=34 Also, when I went to put my name on the local library list for the book, there were over 130 requests already!! The library had ordered over 25 copies!! I rarely see this high level of interest in a new book. This should tell you how many people are affected by this disorder. It is many, many more people than you think. You children are not alone in this, if that is any comfort.

Lurker I couldn't agree with you more! When I was going through the early years of TS with my sons, I was scared out of my mind. Literally. Couldn't eat, couldn't sleep, could barely function. I was SO scared to start the road of "medications", had to be talked into it by my doctor, but even so, I was so THANKFUL for living in an age where there are so many options for my sons, both natural and medical. This was not the case when my husband was young! And we are learning about new treatments every day. Yes, it helped me sleep at night, absolutely. I think almost every parent who visits this site would, without a doubt, prefer the natural route to reducing tics/tic symptoms, but if all else fails, it sure helps to know there are other options to try. Even though my boys are older now and their TS right now is not a problem, I still love reading what other parents have to say about what helped their child - I want to learn all I can, both natural and with medicines. Living with people who have TS - of course I love them dearly and I want to help them all I can Lynsey

I should also mention that we titrated up to the full dose of .075 mg daily, per our doctor's instructions. For four days we started .025 mg once per day, then next four days .025 mg twice per day, thereafter we used .025 mg three times daily. Perhaps they avoided some of the initial side effects you mentioned by doing it this way, I don't know, I am just speculating. I also do find it interesting how Clonodine is administered differently to people, by different doctors, but that is true of any medication I suspect. I also notice that, 11 years ago Clonodine was not really known as a "TS" medication per se, but now it is actually listed as being that, in most write-ups.

Yes I'm still using it. I don't know if it's had any effect on my attention or focus... I never really had attention issues anyway. Well, I joke that I have "adult onset ADD," but in reality I just didn't like my job very much Ok here's my experience with 0.050mg of Clonidine daily. For the first week or two I had some annoying side effects, such as headaches (prior to this I never get headaches, ever, unless I was sick, so I am confident the Clonidine was causing them). I also had eye aches (like a headache, but in my eyes. Feels like someone was squeezing them. Both of these were treated with ibuprofin. I had some sexual side effects that persisted for a few weeks (super annoying), but they seem to be going away. The only side effect was lethargy, which is why I take my dose at night before I go to bed. I didn't really notice too much lethargy during the days, but maybe a little bit more than usual (I'm pretty lazy to begin with). Alright, let's talk about my tic now. On a scale of 1-10, with 1 being "tic free" and 10 being "constant", before I started Clonidine, every day was somewhere between a 7 and a 10. After being on Clonidine for about 2 months, every day is now somewhere between a 4 and an 8. I still have days that are pretty bad (the 8s), but I also have days that are wonderful (the 4s)... like literally, I enjoy going outside on these days because I know I can talk to people and hold eye contact and not be concerned about how I look or what they are thinking. It's like this ball of happiness wells up inside of me and I even smile sometimes (lol I'm pretty cynical most of the time so for me to smile randomly is huge, LOL). Actually, the last few days had been really bad and I was starting to get annoyed thinking that maybe it was losing its effectiveness or something, but out of the blue today is a 4!!!! I'm going to start keeping a record of how I feel each day (rather, how intense the tic is) and see if I can figure out a pattern as to why some days are still bad but some days are good. As for the "improving focus" aspect or whatever for some people, it may just be because Clonidine can make you a little tired which may give the illusion of them having more focus because they are being less ADD because they are a little tired. I dunno. Or it could be that Clonidine's action on the brain promotes focus. I have no idea. I didn't notice any change one way or the other. I have been taking naps recently now that I think about it. Finally, the only other thing I've noticed is that my tic seems to be less now when I am walking around or moving. I thought that was strange. I was working on my computer the other day blinking up a storm, and then I walked into the kitchen to get something to eat, and when I got back I was blinking immediately, but I noticed that during my trip to and from the kitchen, it had stopped. Beats me. If you want to medicate, Clonidine is probably your best bet for a first medication because the side effects are mild compared to other tic drugs. Clonidine can make you sleepy and give you headaches and make your erections less hard than they used to be. Other tic medicines can kill you or give you permanent movement disorders as a result. Clonidine is a smart first choice As far as prescribing dosages, our TS doctor said the smallest therapeutic dose was .075 mg per day, based on his reference literature, because I remember asking him if there was a smaller dose than that, and he looked it up while I was in his office. I'm not saying what you or your doctor decided is wrong, this is just what our doctor told us based on his reference literature. He said any dose smaller than this would be of no therapeutic benefit. Additionally, in order to maintain an "even" amount of this medication in your system for optimal benefits, he said it must be divided and given3 times daily, based on, I believe, how fast it's metabolized. Again, not disputing what you or your doctor have decided for you, but it is food for though. I know of a couple children who are on much higher doses than mine were, (2-3 mg. daily or more) tolerated it rather well, and it helped their tics greatly, sometimes eliminating them. Again, having said that, my children could not tolerate that high a dose so it was out of the question for us. Again, not everyone can tolerate Clonodine, nor does it help everyone. You mentioned about the "improving focus" aspect of Clonodine. I am quoting from a manual on TS, and it states that: "Clonodine is an imodazoline compound with alpha-adrenergic agonist activity. In low doses, it "down-regulates" alpha-adrenergic neurons in the locus ceruleus, decreasing the release of central norepinephrine. (Therefore) the patient may experience a reduction in tension, a feeling of being calm, or a sense of having a "long fuse" before tics are reduced. When there is a positive response, improvement may progressively appear over many months and up to a year or more later. Patients gain confidence in themselves, adjust better to school, feel less irritable, and have fewer tic symptoms. Those therapeutic benefits reinforce each other." We found that to be true in our sons cases, particularly the last two statements. Lynsey

Faith I did not want to use drugs of any kind on my sons, however I found I was in your position about 10 years ago - frustrated with their tics, having tried eliminating many things from their diet and getting some success, but also dealing with a restlessness issue that was driving my son crazy. I tried Clonodine after many many months of thought, I knew I could take them off it if it wasn't working. They started on what the doctor said was very low dose, .050 three times daily, however even that was too sedating and made them irritable, so switched to even lower dose, .025 mg three times daily (this small dose is available in Canada) which they tolerated well, and I think it helped their tics although not eliminated them (remember it's such a tiny dose), but it helped the other aspects enormously - removed the agitation. Having said that, Clonodine results are very individual and different with each person. For some it helps greatly, some it helps minimally, and some people it can make things worse. The only way to know for sure how it will work for your child is to try it under the direction of your doctor Lynsey

Well, I wouldn't say at that small dose (0.025 mg 3 X daily), that it eliminates tics completely. It didn't for my kids. I have heard that in some kids, it is successful at eliminating tics, but I doubt at the small dose my kids were on. We tried a higher dose but in addition to the sedation, it made them very irritable, so we reduced the dose. What I think it did was perhaps it reduced their severity and length of time of waxing period. There is really no way to say that for sure however, just my intuition, and no one was watching their tics than me, so I feel that qualifies me! What it definitely did, was eliminate the severe restlessness/agitation that my older son felt. This was big. He was very unhappy when he was restless because he didn't know how to get rid of it. Made him very unhappy. When he came off Clonodine recently (beginning of summer), after a few months the restlessness/ agitation came back, so he went back on the small dose of clonodine of his own volition, and the restlessness dissipated. Clonodine success is very individual - you never know how much or how little it will help each person (if at all) until you try it. My husband tried it (at double my kids dose) when his tics were fairly severe and he didn't feel it helped, so he went off. Of course, he didn't give it a long enough try. You need to be on it several months to really tell. He didn't have the patience to wait out the sedation period. He was expecting a quick fix, which doesn't always happen with Clonodine. Lynsey

I should add to my other post, regarding the dose of Clonodine, they (my sons) have been on this dose since they were 7 years old, when they were less than half their current weight, and still they did not have any sedative side-effects then after initial adjustment (getting used to it for about a week-and-a-half) They are now 15 and 17 Lynsey

Hi Guy123 My sons were on a dose of Clonodine - .025 mg. Did you know there is a pill available that size? I live in Ontario Canada, don't know if it's available in the US or not. The brand name is Dixarit, but apparently there is also a generic available. My sons took .025 mg. three times daily (morning, mid-aft., before bed). No sedation issues with this dose at all after a couple weeks, and only mild sedation while they were adjusting to it. My ts doc says it's the smallest therapeutic dose they can be on. They are both in the 170 pound range Lynsey Good point. For the record I am a 160-170lbs male and I take 0.05mg, which is 1/2 of the smallest pill available. For a little kid I suspect half of that, or less (if you want to break the pill into 1/8s... ) may work. I did have drowsiness as a side effect but it has subsided for the most part. I still get dizzy when I stand up too fast. edit - not trying to tell you what to do, just saying. Also sorry you had a bad experience with your neuro. Mine is about the coolest doctor I've ever been to. If you're in the Chicago burbs I can give you a recommendation.

Brink I was just wondering what dose of Clonodine your child was on? You said it made him like a zombie, was the dose too high, could you have lowered the dose? That's what we did with our sons and it worked quite well afterwards.

Hi Bonnie I'm glad I can help or ease your mind at least. We started our kids on Clonodine when they were about 8 years old. My youngest, who is 15, stopped taking it about a year ago and so far, so good. My oldest, who's 17, stopped taking clonodine this past summer. Still has small tics now and then (not a problem) but his restlessness came back, after a couple months. He calls it restlessness, but it's like a feeling of inner-agitation that he can't shake. I suggested he go back on the clonodine and he happily agreed. He's back on the low-dose clonodine and he's much happier. The clonazepam we started giving about 6 years ago, but only as-needed and very sporadically. For example, if my oldest son has a big presentation at school (his absolute, all-time worst fear), he might ask me for clonazepam beforehand. Other times he says, I'll give it a try without. Your son sounds EXACTLY like my youngest. Has to know everything...when it will happen...health anxiety, etc. This is classic anxiety. An anxious person cannot accept uncertainty, in any part of their life. But they (we) have to learn, this is life. There is no certainty in life. There are strategies for doing this. I wish I could tell you some simple strategies but not enough space here - Bonnie, I saw a psychologist who specialized in anxiety for 12 years to learn cognitive behaviour therapy for my anxiety. What I learned, I have taught, in my own way, to my children. If you ever need more info. on this please don't hesitate to send me a private email, I can give you as much information as I have, and the name of the best book (I believe) for learning these strategies, that you can then teach your son.