lynsey

You're right, both sets of genes play a role. My mother-in-law got quite upset with me once, that I was insinuating the TS came from their side of the family. Well, it did! But having said that, both my boys inherited the anxiety gene from MY side, and that has been far more problematic for them than the tics! So I can't say I have the superior gene pool!! My husband's tics subsided in his 20's somewhat, but have exploded since, yes, I guess about his 30's. Now he's 47 and they're pretty significant (head nods, head jerks, eye blinks, constant sniffing). The TS doc said he is unusual, most ticcing abates as you age. But as I said in another post, he does everything possible to aggravate it - doesn't watch what he eats, plays blinking video games.... so I told him, he's a big boy, he has to look after himself.....

Well, neither of them had horrendous tics, so in that way, I guess I would say their severity was evenly matched, but the tics were different and they emerged at different times and for different lengths of time. I remember asking my TS doctor, "I know this question sounds silly, but is it possible that my genes would "dilute" my husband's genes, in terms of how my children's TS would manifest itself?" He said certainly this could be true. My friend though this was ridiculous - she said you either inherit something or you don't. But, I know you can inherit the TS gene and not show any tics at all. Your children then may inherit the gene from you, and display tics. This is why people often say their parents never had TS, but this is because the tics never manifested. I also thought, if a woman of color, and white male (or vice versa) have children, the skin color is often neither black nor white, but a combination of the two. Same thing often happens (but not always) with hair color, eye color, freckles, height, etc. Don't you think? This gave me some hope that my kids would not have TS with the same severity as my husband. I'm off topic here, but I thought that was something to hold on to

Hi bmom Prior to tics, my oldest son had recurring, chronic ear infections and high fevers. He did have strep, once. Then he had surgery for hernia repair, then following that he had surgery for tonsils and adenoid removal. Then he developed asthma which flared up only when he had bronchial infections - but these were frequent. Thereafter he had surgery for ear tubes, which solved many of his problems. His tics were always much worse when he was sick. Many times, sicknesses would CAUSE a tic, particularly if it was a bronchial infection where he was coughing a lot, without fail he would get a throat-clearing tic that would last for a long time. He did have pneumonia once or twice, and a partially collapsed lung one time. He was a little boy that was sick an awful lot. (he's much better now. We sought the top doctors for him and their conclusion was that he had perhaps a slightly narrower airway than other children, hence the problems....and he would grow out of it. He has, for the most part). My youngest son was not sick very often and when he was, he could shake it off quickly. However, he did have a terrible strep infection when he was 4 - his tonsils were so enlarged and infected, the doctor coined them "kissing tonsils", because they were touching each other. Thereafter we had his tonsils and adenoids removed. When he was a baby, he had the worst - the WORST - case of colic. It lasted until he was almost a year old. Cried constantly. We observe his tics to be more related to stressful situations. Starting school, a very stressful occasion for him, was the start of his tics - and it continued, because he was always under stress at school. By the way, after I did research about vaccines, I did not allow my sons to have Hep B or meningitis vaccines that the school was giving all students (I live in Ontario, Canada). It raised some eyebrows because I was the only one not allowing it, and the nurses tried to tell me I had to, but I didn't allow it, and I'm glad I didn't

Mary Cognitive behaviour therapy is sometimes difficult for a child to grasp. My pre-teen was not interested in it at all when I took him. He thought it was ridiculous. (It's not, but he was too young still to understand how it could really help him). The doctor had warned me they don't understand it as well as adults or older teens. I learned quite a bit of cognitive behaviour therapy for my own anxiety issues and I sort of tailored my approach to teach him a few things, but even at 15, he is not of the mindset yet to really grasp it's value. Here is a book I found that may be more geared to your child's age - you can get a book right away and read it, and try their suggestions, and not be limited to waiting to find a doctor. That's what I did, before I found the right doctor. There are also other books out there but this is one I've used before: http://www.amazon.ca/gp/reader/1572241918/...357#reader-link hope this helps!

Yes, my husband's father did have TS, but I think his tics were fairly mild. By the time I met my husband, my father-in-law was 60 and he had an almost imperceptible (but umistakeable to me), head nod, plus he would raise and lower his hand at the same time. However his entire family would never acknowledge these as tics. My mother-in-law - they are both european - denied her husband had any tics whatsoever. That's ok, I understood, they are from a different culture and a different era. Isn't it funny - she told me that her son (my husband) just had a "bad habit", just like your husband's family told him!!! Unfortunately my husband's tics (he's 47) are fairly significant - severe head nods, blinking, sniffing and head jerking. However he has the ability to "shut them off" when we are with other people or he is at work, and then "lets go" at home. Also, he does all the worst things to aggravate it - eats too much sweets, plays rapid-blinking video games (yes, he's like a kid!), drinks too much coffee.....so he just lives with the consequences. If he wants to lower his tics he knows what to do....

Dear Mary and CP Mary, you mentioned that except for the teasing he gets at school, he otherwise enjoys school. I would not put up with the teasing! I would go to the school principal and say, this should not be happening, you should make this stop immediately. I would get your son to tell you names of who is teasing him, and I would put the kaibosh on the teasing, pronto. This is an era of "zero tolerance". I have intervened on my son's behalf MANY times. Some of the more aggressive episodes of teasing were handled by giving the offender a suspension of anywhere of 1-3 days. The teasing issues were addressed right away, and believe me, they stopped. I didn't care if the principal told the teasing student that the parents had called him, I WANTED them to know that there was a mother lioness behind my son, and damned if I was going to let them get away with teasing or bullying. Thereafter, they treated my sons with the respect they deserved, and if they saw me in the school, it was "Hello Mrs.", they treated me respectfully too. Those that demand respect, get it. Don't be afraid to intervene if you think the teasing is excessive. He doesn't have to put up with it. Also, the "routine" you used with the "kissing hand" - absolutely PERFECT. What you did was you offered him a strategy to deal with an anxious situation. This is "cognitive behaviour therapy". You instinctively did the absolute right thing, and soon enough, he didn't even need this strategy, he slowly learned to handle it as he matured. BRAVO TO YOU! You are a very instinctual and smart mom and your son is blessed to have you. CP, yes it is wonderful when you see other friends appreciate your child for all the qualities and talents they possess. Most children really do ignore the tics, they get used to seeing them, and then they don't pay attention to them any more and they just look at the "great friend" they have. Did you notice the TS in your husband when you met him? My husband wasn't ticcing when I met him, but later on he did, and when I asked him what it was, he told me he was afraid to tell me about it before because maybe I wouldn't love him. Oh my goodness, he had so many wonderful qualities, I didn't care at all about the TS, but only that it hurt his neck sometimes. I never met anyone like him. He's never gotten angry at me (in 20 years marriage!), he's gentle, he's hardworking, he's devoted.....all the things I wanted in a man.

Bonnie I think these "off-topic" things are a super-important part of living with someone who has TS. It is so important for us to share these things. These are the "human" issues. How we react, how our husband's react, what we do to maintain our sanity, and maintain a "regular life". We need to know what others go through, to see that what we are going through is just the same as others. Both my sons have severe anxiety, but they have gotten much better over the years. My youngest had such separation anxiety, he cried every day at school for YEARS. He got better around grade 5, and now he has a inner strength that amazes me. Bonnie, I remember when I took my 6 yr old son to a birthday party of a friend - she had the party at a recreation centre, complete with a clown and all kinds of fun. My son cried non-stop. The other 20 kids sat around the clown, completely happy, while my son sat by the wall (next to me) and cried and cried. He was so anxious. I thought, he cries at a birthday party??? It was so hard. Luckily, several understanding moms came over to me and told me, don't sweat it, he's a cutie, he'll get over it. God puts understanding people in your life at the moment you need it most...

Hi Mary Oh my goodness, your husband sounds EXACTLY like my husband! (and you sound just like me, god bless you!!) Your husband had the same attitude, same responses. What a godsend they are, these husbands of ours. I NEEDED to hear the things that my husband said. I needed to hear him "minimize" the things I thought were catastrophic. I needed him to remind me that no matter what, we had to live a normal life, it was essential for not just me, but our children! I thanked God many times for my husband, during these times. Where would I have been if my husband was an emotional wreck like me? I needed him to say, "it's nothing Lyn! There's fine!" (but look at that tic! I would say) so what?!! he would respond. It's nothing. It'll go away just like the rest of them. Would you quit worrying?" When you marry a man, you never know - you can't possibly know - how he will be during thesestressful times of life when you are faced with life's tremendous difficulties, especially as regards to your children. How thankful I was that he was a perfect opposite to me....calm, rational, not obsessive, maintaining his sense of humor and maintaining our "normal" life. I don't think this was an accident by the way - God gives us these challenges, and he gives us the people to help us with these challenges (my husband, my parents, this forum!!) don't you think? You are a special person Mary, I'm glad to have met you here

Hi CP thanks for your kind words about my posts, I'm happy it helps others to know they are going through the same feelings, emotions.... I can't say that I found their tics increased during times of rapid growth, but having said that, my kids were on low-dose of Clonodine, so that could have been muting their tendency to tic. It could very well be that tics increase during times of rapid growth, as the brain is developing at an astronomical rate during these times, and it would make sense that this might increase tics temporarily. But, again, TS doesn't follow any "rules" regarding how it presents and how it progresses, it is completely unique to each child. My husband's tics were much much worse during his childhood and diminished during his adolescence, which our TS doctor told is is "generally, but not always" the way it goes. I found my sons tics increased when the seasons changed, when school started, and mid-way through the school year.....don't know if you find this too. You said your son has been dealing with this in a way that you can't even explain. You said that beautifully!! I found that to be true for both my sons. I said they had an "inner strength", at their young ages, that I lacked. They are truly bright shining stars, these children, (yours, mine, and all kids with TS) - we at first think this TS is a huge flaw, a disability, but God gives these children something special. They will grow up to be unique unlike any other child you have seen in terms of inner strength, understanding character, kindness, empathy for others, all the important things you want your child to have. Your son sounds wonderful, amazing, yes - they surprise you, don't they? He sounds just like my youngest, and I get strength from them, as you do too!

Hi Mary What you did sounds very familiar to me. At first, I would obsessively watch both my sons and their ticcing. It was absurd, but in some dark recesses of my mind, I thought by watching them.....I don't know.....maybe I would "will" their tics away by mental telepathy or something. I would watch their tics until they stopped!! Absurd, I know, but you go through some crazy emotions. Then I realized I was literally devastating myself physically and emotionally by doing this - certainly nothing good was coming of it. Their tics would run their course, regardless if I watched them or not. When I realized this, I went to the other extreme. I forced myself NOT to look. I was glad when they went to school, because I got a mental break from it all. I felt so guilty for feeling this way! What kind of mother was I? But I knew I loved them deeply, and that I was human. They needed to learn how to interact with people at school. It was as simple as that. And I needed to stop hovering over them. (Then it was like I was waiting for a "shoe" to drop. I don't know what I was waiting for, but I expected something catastrophic to happen, because I wasn't "watching". Of course, nothing catastrophic happened). They got through each day just fine, they played with their friends, they had good days and some not-so-good days at school, like every other kid. In short, they were normal. But every time I saw a new tic, it was the same old kicked-in-the-gut feeling. I had to stop myself from my intense reactions to each new tic. Each tic would make me frightened again. Are kids gonna see this and make fun of them? Are they going to get worse? But I had to stop it, because it was doing me no good. I needed to be a mother to these boys, I needed for them to see I was strong, they were depending on me. But you know what I discovered? These wonderful boys had a strength that I did not posess. Maybe they were too young and too innocent to know about all the worst possibilities I was imagining in my mind. But good for them. Once I said to the pre-kindergarten teacher, with tears in my eyes, "he has a lot of tics, but just ignore them". She said to me, "tons of kids have tics. Why don't you just ignore them and stop stressing? You know what they say, ignorance is bliss". I thought it was the stupidist thing anyone could have ever said to me, but now I realize the wisdom in what she was saying. But sadly it took me a long time - years - before my worry lessened and I realized they would be OK, no matter what. Probably my worst years were pre-kindergarten to grade 6, in terms of worrying. It took me a long time to settle down. I don't recommend any one else taking this long (but I felt it was out of my control). I started looking at other mothers whose children ticced, and to far greater degrees than my own. How did they react? How did they interact with their child? and you know what I found? Most of them had no idea about TS, and they DIDN'T WANT TO KNOW. They certainly didn't want their child diagnosed with it. So they ignored the tics, and were just going on about their life, and if their child had some tics, so be it. Well, I decided I would adopt that attitude, but also be knowledgeable on how I could help my child to reduce his tics. So I started them on Clonodine fairly young. I think it was in the first grade. They took the clonodine at low dose, all throughout their elementary school years. It didn't eliminate their ticcing completely, but I felt it helped reduce the severity and length of waxing period. One last thing I want to tell you. As I mentioned before, my husband had severe tics, and was teased terribly in school (this was my fear for my boys). I asked my mother-in-law, how did you cope? Because I feel like I'm falling apart! She said, "what choice did I have? I had to keep going to work, I had to keep going on with my life as a mother. My heart ached for him, but there was nothing I could do." Well, Mary, things are very different now. We have many things we can do - (I even thought, if their tics were bad enough, I could home-school for a while. Their TS doctor talked me out of this. He said, it was vitally important for them to go to school, to learn how to socialize. He said it was much better for them to be on medications and go to school, then to stay at home. He told me school is vital for a child's development). So this is why I started them on the Clonodine. And I've never regretted it. Also, I was afraid to try all these supplements, because many of them I read would aggravate tics in some children. I found better results by eliminating artificial colors and flavors from their diet, as little "junk" food as possible, and healthy eating in general. Don't be hard on yourself. You are first and foremost a mother, who cares deeply about her child and are doing the best you can for him. By the way, mine are 18 and 15 now, and I still have a "small" physical reaction when I see tics....can't help it

Hi Patty I think many mothers with children who have TS have similar reactions as you and I. My friend (whose son had very severe TS - was on many medications, and now is a senior in highschool and is much much better now, and is being taken off meds, by the way) - she and I used to say that every time we saw a new tic, we got that kicked-in-the-stomach feeling. Like, oh no, here we go again. I was always worried the most that they would be ostracized for their tics. My mother used to say to me, god gave you these children because he knew you were the best mother for them and would help them in whatever way they needed. But I told her, this is killing me, I don't think I'm up for the job! And she said, yes you are - those children are beautiful and you are doing a wonderful job. I needed her wonderful support to get me through. My kids tics were all different. Some would appear for a week, and then wane. Some for two weeks, and then wane. Some were 3 weeks or more. Not many lasted more than a month. The severest part of the waxing period was usually less than a week, and then it was slowly diminishing. But often, just as I was going, "ahh, it's gone", another new tic would appear, and the cycle would begin again. I finally got to trust that the tic, whatever it was, would be gone in a matter of time. But this is not always the case with every child with TS. Some tics linger for a longer period. After observing your child through many tics, and many waxes and wanes, you will soon get to know what is typical for him or her. When you say you didn't want to be around him because it spikes your anxiety, I know how you feel. At first I used to obsessively watch them to see how bad the tic was. Then I thought - this is really killing me - so I would force myself not to look. They were no where near as bothered by their tic as I was. I reminded myself of that constantly. Sometimes (I'm even ashamed to say), when I saw what looked to be a new, particularly strange tic, I would blurt out "what are you doing? Stop that!" You're emotionally and physically completely sapped and depleted, and sometimes it pushes you to say and do things you never imagine you would....thankfully they never held it against me behaviour they were exhibiting

Hi Bonnie I am happy to help with whatever information I have gleaned over the last 12 years. My boys had so many tics, at different times. They had a "hmm'ing" tic (making a hmm noise), eye blinking tics of all manner, head jerking, grinding of teeth (I also declined orthodontia because of that, and their teeth ended up just fine) shoulder shrugging, neck twisting....gee, I've forgotten a lot of them. It's hard to quantify how the Clonodine helped the tics, but I believe it helped lessen their frequency and severity. When I understood how clonodine works (see below), I could understand how it might ameliorate the tics. But the best part of the clonodine was it eliminated my son's restlessness - completely. He was a much happier boy when the restlessness was gone. By the way, it helps different children to different extents, and depends on the dose. You can never know how it will help, or even if it will help, until you try it. My friend's son had severe, severe tics, an his tics, but was hugely sedating at that high dose, and also made him very crabby so she had to reduce the dose. My sons are on the lowest dose available - .025 mg 3X daily. I have never tried Bonnie's vitamins. I heard that Omega 3-6-9 was very beneficial to reducing tics so I gave them that. I can best explain it by quoting from the "Guide to the Diagnosis and Treatment of Tourette Syndrome" (Tourette Syndrome Association): "Clonodine is an imidiazoline 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. Since 1979 it has been considered to be of benefit for the treatment of TS, although the response rate is lower than that of either haloperidol or pimozide. In general it is of advantage because of the low incidence of side effects associated with it's use. Perhaps of the greatest importance is that it does not have the potential of causing tardive dyskinesia..... In addition to reducing the simple motor and phonic symptoms of TS, clonodine seems especially useful in improving attentional problems, and ameliorating complex motor and phonic symptoms..... 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. A gradual decrease in complex motor tics and compulsions also may precede clear improvement in simple tics....." Hope this helps

Hi bmom You can ask me as much as you want, I know how you're feeling! I wish I could just hug you and tell you not to worry about things, but you are a mom, and a very caring mom, and so I know it is hard not to worry. But I did great damage to my health from this worry. My stomach is terrible and I must be on stomach medications now, probably forever. This is what my worry did to me. I used to come home after dropping my boys off at school, and lay down on the couch and cry. I prayed a lot. I talked to my mom a lot. My husband, who has much worse TS than my boys, kept saying to me, "they're not bad at all! You should have seen me!" but I could not be consoled. I prepared myself for the worst. I expected the worst. But the "worst" did not happen. They went through years of little tics, changing tics, anxiety, a little OCD. I slowly realized that, if the "worst" happened, meaning they deteriorated into full-on, constant ticcing (my worst fear) -- I could do something about this!! I was not without options! I was not helpless! I could help them! This realization unfortunately hit me far too late for my poor tummy. In my husbands' day, they didn't know what to do about TS except hit him with heavy doses of Haldol, which made him violently ill. Today, we know SO MUCH MORE! We have so many options! You are raising children in an era where new treatments and knowledge about TS are occurring every day! And this forum keeps you on the forefront of these treatments and options. I prefer the natural approach, if I can do it this way, and so I always start with this. As regard to your question about your daughter, I can only tell you that boys are 4-5 times more likely to inherit the gene that predisposes them to tics, than girls do. Some publications even state the likelihood even higher, if you are a boy, to inherit the TS gene. However everything I've read states the likelihood for girls is very small. This doesn't mean that girls can't get TS, but it seems they are much less likely to get TS. I have no daughters, just my two beautiful boys, but in my husband's family - his two sisters did not get TS, but my husband did. There were other factors at play that made my husband's TS explode when he was young. He almost died from a serious infection, and this seemed to trigger his years of significant tics. So you may have the gene, but not express it with any significant tics. I hope I helped. Feel free to ask me anything else. (You can also email me if you like)

My two sons have gone a year or more with no tics, numerous times, and I think I am 'done" with it, and then the tics "pop" up here and there. You never know what environmental, seasonal, emotional, or other trigger will cause it to flare up again. Although the reoccurrences didn't seem to be long-lasting, they still popped up. However every case is different, and my ts doctor had told me, as with the unpredictibility of the disorder, tics can disappear, for years at a time, and even for good. You just never know. My husband, who had very severe head/neck tics, had gone on a rigid diet for several years and the tics went away completely. However he found it difficult after years of adhering to a strict (and I mean strict) diet, and he slowly lapsed into old eating habits and many of the tics returned, and now he just lives with them.....

ilovedogs: This is the best book I've ever read, for people with anxiety: The Worry Cure, by Robert Leahy It teaches you how to deal with anxiety. These are the same techniques I taught my sons. See this excerpt: http://www.cbsnews.com/stories/2005/12/06/...in1099210.shtml Lynsey

Oh my goodness, you hit the nail on the head. Anxiety was the NUMERO UNO symptom we had to deal with, with both boys. They also had some OCD too. But anxiety? BIG TIME. They still have it. Yes, anxiety was BY FAR more problematic than the tics. They inherited that from me. Over the last 10 years I have learned cognitive therapy in dealing with my anxiety, and have passed the techniques along to them, and it has helped them immensely.

Hi bmom I'm happy to answer you. The primary years seemed to be the "worst". That would be grades kindergarten to about gr. 4. But the good thing about these years was that most kids this age are oblivious to tics. Have you ever watched a bunch of children in the schoolyard? I would venture to say that more than HALF of children have tics of some form. The more I saw this, the more I relaxed. Eye blinking, shoulder shrugging, tapping, even twirling while walking - I saw it all - most parents were totally oblivious that their child had a tic. I decided I would be oblivious too. Grade 5-8, as they got more confident in school, the tics lessened. They were good at "hiding" their tics as well. Camouflaging it, if you will. I find in highschool, it has really lessened even more, to the point it almost seemed it had stopped. But occasionally they have a brief episode of a certain tic. For example, a mild head jerk, or my youngest makes this gagging tic (but can disguise it while he's at school - turn his head to the side when he does it or whatever). Then, you must know, like the tides! tics WAX and WANE. So that's my mantra. They are waxing. and they should wane. And they always do. I learned not to get too shocked by certain tics I saw. Just kept telling myself, "this too shall pass". Yes, I did resort to meds. In addition to tics, my oldest son had a restlessness that he (yes, he) found very annoying. He said, "I FEEL SO RESTLESS!!". I hated seeing him suffer with this. I didn't want to put him on Ritalin though. So after much research, and conferring with his doctor, we started a very, very small dose of Clonodine. 0.25 mg three times a day. It worked just nicely to diffuse his restlessness, and had the added benefit of diffusing his propensity to tic. Yet it was so minor a dose that he was not sleepy, and had no side effects whatsoever. I decided to put my other son on this as well for tics. They both took it throughout grade school and now in high school, my youngest has stopped, my oldest stopped for a while but the restlessness came back, so he is back on it. Are you familiar with Clonodine? It is technically a blood pressure medication. It made sense to me, if their blood pressure was lowered ever so slightly, their restlessness and urge to tic would hopefully also be lowered, and we found that to be true. Truthfully though, I found eliminating as much as possible artificial colors and artificial flavors from their diet was a big, big help in lowering and even eliminating their tics. If you have a hard time having them on a strict diet (as I did), I could at least do this. Sweets were big triggers (Halloween and easter were nightmares) but they had to enjoy being kids so we lived with the consequences...once the sugar was out of their system the tics generally waned. Also, playing game-boys was a trigger, watching non-LCD screens, or playing video games with fast flickering lights. What HELPED diminish their tics was: a good night's sleep, healthy eating, and a relaxed non-stressful home environment. Hope this was helpful. Anything else I can tell you, please let me know.

Thank you too Chemar, you were a frequent poster at that time when I needed help and I learned a lot from you......(and from Claire, she was a wealth of knowledge) If there is any questions I can answer for anyone else, having gone through this with my 2 sons, I would be happy to

Hi everyone, Several years ago I was a frequent visitor to this site. My husband has TS, fairly significantly, and I had 2 sons who started displaying tics and other symptoms in kindergarten. Thereafter followed what seemed like a nightmare of days and months (years?) of anguished worry on my part, about how bad they would get, what would I do to help them, how would their life be? I tore myself up inside. I have terrible stomach problems from these years of unnecessary worry. I wanted to tell you all, those of you who have young ones just starting to exhibit symptoms, try not to panic like I did! My two sons are teenagers now, one graduating from high school and the other one halfway through high school. They are exceptional students and exceptional human beings. Nothing was ever as bad as I imagined it would be. There were waxes and wanes, but I learned to wait out the waxing, and wait for the waning! I read and used many of the member's advice here in this forum, from adjusting their diet, to getting LCD computer screens, to knowing what situations exacerbated their symptoms, to fighting for them with the school administration. All helped immensely. Most of their symptoms subsided as the years went by, but there are still things that come and go. We've learned to deal with it. We got through it. But we didn't just get through it. Slowly, slowly I could see their specialness emerging. I saw things in them that you rarely see in todays youth. They are wonderful mature young men now, with a sensitivity, empathy, kindness, and understanding of others that is truly unique, and is often born of dealing with adversities such as TS. Yours will be too. Don't despair! You will look back, years from now, and wonder why you stressed so much.