lynsey

No, I didn't. That's weird. I have space in my inbox, too. I'll PM you my gmail account and you can just cut and paste it to there. Thanks, B Hi Bonnie I noticed this thread, and wanted to tell you..... I had sent you a response to a PM you had sent me, not that long ago, did you get it? Because after I sent it, it "disappeared" and I couldn't even find it in my outmail Lynsey

Thanks Cheri, I appreciate your feedback. I've done years of CBT for my anxiety, and helped my sons by teaching them some CBT techniques for their anxiety, but I didn't realize that the "tic substitution" was a CBT technique. That's great to know, as I am a die-hard fan of CBT...it saved my life, and I was determined to have my sons learn it much earlier than me. It's great that you exposed your son to CBT when he was young, I think it is the most useful non-medicinal tool out there. However, I found my sons did not like formal CBT training much at all (no real reason, the psychologists were beyond excellent, my sons just weren't receptive), but they were much more receptive to me teaching it to them, as situations arose. Lynsey

OK, this is probably gonna sound way out there for some of you, but have you ever tried what I call "tic substitution" or "tic modification"? These are terms that I came up with for how I helped my sons deal with some of their more noticeable tics. For example, if they would exclaim: Jesus! I would suggest that they say something very close but not exactly, like: "Jeez!!!" which sounds a lot better if they are exclaiming these words in public. Or a physical tic such as hair twisting, you can possibly modify by having them twist a string in their hands instead. Now, I can't say this would work for everyone, but it did help my sons through some of their more noticeable tics. Even if they got stuck on the "tic substitution" it was usually less-noticeable and more "mainstream", and so they were less stressed about it, and consequently the tic would eventually wane completely (as opposed to them being stressed about a noticeable tic, which only exacerbated it). Again, might not work for everyone, but it did for us and so may be worth a try for some of you. Lynsey

Husband - tics started around 7-8 years old Age now: 49 Increase or decrease: changed throughout the years. Severe motor and vocal tics when young, peaking in late elementary school, subsiding slightly in high school. Went away in early adulthood when adhered to a rigid diet of no processed foods, no artificial colors or flavors. Tics returned when he went off the diet. Now they are still there, not really decreasing, fairly significant head bob, eye blinking and sniffing tics, but can control them in public and at work (usually). Note: I believe the severity of his childhood tics was affected negatively by an accident he had, and subsequent severe infection where he almost died. Otherwise I don't believe his tics would have been as severe. Father-in-law: age tics began: unknown. He denies that he has them. Age now: 82 Increase or decrease: I noticed his tics (subtle as they were), when I first met him when he was in his 60's. They are pretty much gone now. Younger son: tics around 4-5 years old Age now: almost 16 Increase or decrease: tics have decreased since gr. 6-7-8 and pretty much ceased since high school started. Older son: tics started around 4-5 years old Age now: 18 Increase or decrease: tics have decreased. Goes long stretches without any tics, but still crop up now and again (mostly subtle neck twists, sometimes eye blinks)

You all seem like you are doing the right things, and so you may be on the right track, and as you say, it just takes time. What is a solution for one child, is not necessarily the solution for another. It sounds to me like you are giving him many social experiences which he needs to mature and grow, and definitely time and maturity will help a lot of the anxiety issues. If I've learned anything about raising an anxious child, it is that improvement is sometimes agonizingly slow... but steady. It happens over months and years, but it happens. You have to weigh the pros and cons and find the solution that you feel is best for you and your son. For us, I'm glad I had my son in school - he gained an inner strength that I don't know he would have had otherwise.

Bonnie Do you mind me asking why he is home-schooled? (Do you feel it is better to home-school him) Please know, I'm not casting any judgements here. My youngest son sounded very much like yours in the anxiety department, and I seriously (and I mean seriously) considered home-schooling him. In fact, his anxiety was so severe, (we're talking about a child who would cry at other kids BIRTHDAY PARTIES - I mean, anxiety-PLUS. He would never go anywhere without me, and my husband and I couldn't go anywhere without him). You can imagine how anxiety-ridden he was at school. He cried every day walking in. He cried if he didn't understand something at school. He cried when they changed his routine. The principal of the school sort of got "fed-up" with all his anxious peculiarities, and my calls to the school, and suggested he be home-schooled. My doctor told me it was very important for him that he learn in a school environment, that this would enable him to teach himself strategies for dealing with his anxiety in social settings and all other types of settings. I'll admit, it was traumatic for 6 years, he had daily anxiety issues and we dealt with them, literally, one day at a time - got a special psychologist in to talk to the principal/teachers and give them insight into his anxiety, so they knew how to deal with him. He emerged from this period a strong young adult who copes quite well with his anxiety now, and I don't think he would have if I had home-schooled him. Plus, I NEEDED the break when he went to school! It was essential to my mental health. I was destroying my health, mentally and physically, trying to cope with his extreme anxiety. It's just a thought..... I know every parent does what they believe is best for their child, and home-schooling may be best for your child....just telling you my experience Lynsey

Actually, when you think of what a fetus/baby is bombarded with these days, from inception and then time of birth, it's amazing they don't have more health problems.... I too wrestled with the "why?" issue - can't tell you how many times I cried about this to my mother. She kept saying to me, you are doing a fantastic job, they are two fantastic boys..... I always felt better when she said that.....now they are young adults and I wish I hadn't stressed like I did, but you can't help it

Why don't you try the probiotic yogurts for the kids. There's so many - Activia, Yoptimal, Pro-Avantage (by President's Choice).... I figure it's a double benefit, the yogurt's good for them, and so is the probiotic that's in it My kids eat them like crazy I make sure they have no artificial flavors or colors.

Myrose I'm just wondering, can you tell me why your insurance cancelled your daughter? I'm from Canada so I don't know how the health insurance in the US works. Why would they cancel your daughter? Because she has a disorder? I am really appalled.... Lynsey

Cheri Sounds very reminiscent of my sons encounters - they in particular can't stand to see someone else treated cruelly or unjustly, not just themselves, including when they felt teachers were too harsh on particular students. I would hear about it every day. Even as young adults, they won't argue with friends and are very fair-minded individuals. In my husband, I noticed a gentleness, an inability to get "worked up" by anything. I once said to him in exasperation, "don't you worry???!!!!" His response: "I'll worry when there's something to worry about". That's the way he was the whole time we were raising our boys and I would stress over every little (and not so little) tic. "I'll worry when there's something to worry about." It would bring me down from a "10" in anxiety, back down to a "3". He also wouldn't hurt a thing - (found it almost impossible to be a disciplinarian to our boys, so I took on that role) so I guess we complement each others' shortcomings. Lynsey

You mentioned about their abilities: academic, creative, etc. You must also notice something very special about their character, and personality? A uniqueness, a sensitivity that you do not see in other children. I swear, living with Tourette's makes you a better person. Some might disagree with me, I'm not saying you have to have Tourette's to be a better person, but I see it in my husband, and I see it in my children. When my son was in Grade 4, he was filled with anxiety and would walk around the playground at recess with the "not-cool" group, but he didn't care, he was just happy to be with a group of kids. I'll never forget what he told me one day when he came home. He saw three other kids, who had just discovered a mouse, which had ran out from under a dumpster in the schoolyard. These boys immediately laughed and cornered this little mouse, and one by one, they each took turns stomping on the mouse until it was completely flat. Then they kicked the flattened mouse-corpse away and laughed. My son was utterly mortified. He came home and told me all about it. He said to me the other kids didn't seem bothered by it and in fact found it quite funny. He said to me, so sweetly, "I said to them, what did that little mouse ever do to you??" What courage he showed, to say this and risk being ridiculed himself. What strength of character he showed, at such a young age. These are the kinds of character traits I think are stronger in children with TS.... Lynsey

Along the same lines, here was another interesting thing I read: http://tourettesyndromenowwhat.yuku.com/fo...ewtopic/id/1632

I'm sure all of you know special skills or abilities or character traits that your children have, that you are proud of. I've always believed that if God gives us or our children challenges, or crosses to bear, he also gives us very great blessings in other ways if we only look for them. This is a very interesting and uplifting article that talks about the special abilities that are unique to children with Tourette Syndrome....I found it very uplifting http://www.sciencentral.com/articles/view....le_id=218392999 Lynsey

Lyn I checked the internet a little more, here is something else interesting to read about the link (or lack of) between TS and seizures....it's just food for thought..... http://www.medhelp.org/forums/neuro/archive/4918.html lynsey

Myrose Sorry, I was trying to include your question in my last reply and I screwed it up a bit - hope you can read my answer in there OK...... lynsey

Also I read the primary characteristic of TS is that it is a neurobiological disorder stemming from the abnormal metabolism of a common chemical neurotransmitters - dopamine, and also seratonin and norepinephrin. ADD similarly stems from this abnormal metabolism, which is why you often see people with TS who also have ADD and other co-morbid conditions such as OCD.

Myrose: The internet has oodles of websites that explain the latest findings about the causes of Tourette's syndrome. Wikipedia netted it out quite well: http://en.wikipedia.org/wiki/Causes_and_or...urette_syndrome But most importantly, it points out that Tourette's Syndrome is a condition of "incomplete penetrance", meaning that not everyone who inherits the genetic vulnerability will show symptoms. In addition, Tourette's also shows "variable expression", which means that even family members with the same genetic makeup may show different levels of symptom severity. You were talking about your family, how it doesn't really fall into a pattern as regards to TS, I think this is true of many families, for the reasons above. My husband's father had mild tics (the family refuses to acknowledge this but I have observed it myself). My husband has significant tics, our 2 sons have tics, my husband's two sisters show no evidence of tics, and his sister's daughter shows no evidence of tics. This doesn't necessarily mean they don't carry the TS gene, but that they are not showing symptoms, or are not showing symptoms that are noticeable. Lynsey

Well, I have to weigh in here. My hubby always had back neck pain due to his significant rapid-head bobs, combined with really significant eye tics. Many times he would be tremendously physically exhausted from this. When he was an older teen, he told me he more than dabbled in weed, (said he always got high-quality), and he said it hugely helped his tics. Although he hasn't done it in about 25 years... but he said he wouldn't be adverse to, should the opportunity present itself! For adults that really suffer with tics, I definitely think it should be legalized for medicinal purposes.

Hi girls I just wanted to add my two cents here, for whatever it's worth.... I too wondered about these little fruit cups...for the same reasons as you both, the syrup, and the coloring in the red cherries. You can get the ones without cherries too. Even the ones with cherries have hardly any cherry pieces. But heck, I thought I would try it, and see how, if at all, it affected them. Because it is not the worst thing I thought, it is not like some of those fruit roll-ups that are loaded in color or a chocolate bar or even flavored chips. I don't know guys, after years of checking things I thought, why not see how they did on it. And they were fine and it didn't affect them negatively at all, and they enjoy having these in their lunch, along with a healthy sandwich. I don't give them all the time but it's nice for a treat. I understand what you are both saying, I was the same way, but in something like this I think I just thought, well, give it a try and if it affects them, stop giving it and then you can say to them, well we tried it but it's not good for your tics? Anyway, it's just something to think about, after having gone through 10 years of this (reading labels, avoiding tons of foods)....sometimes it's hard and they can handle more foods than I thought lynsey

.........and by "no one seems to listen around here", I don't mean the wonderful people at this forum! The people on this forum are the most informed group of people I think I have ever met. I mean, the people who live in my area/city/province.....I don't see a groundswell of opposition to vaccines here. If I had known then what I know now, I wouldn't even have allowed some of the baby vaccines my kids had..... lynsey lynsey

Here in Ontario they have started giving the HEP B vaccine to all the Gr. 7 students as a matter of public health, and now in Gr. 8, the meningitis vaccine...they keep adding more. I think I may have been the only parent who bothered to even research the horrendous potential side effects (some permanent), of these vaccines. I amassed a folder an inch thick on it. I showed every one I knew (including, most especially, my friends whose kids had TS) and every one thought I was nuts....even the other TS moms. Ended up, I was the only one who refused the vaccines for my kids, even my TS doctor said he thought they should get it, but I still refused...and it wasn't an "uninformed" refusal, I really did my research. I venture to say even the doctor didn't know one percent of what I learned about the risks of these vaccines. (My friend's son with TS had a huge spike in tics following the Hep B vaccine....it is given in 2 separate injections). I'm appalled at the lack of interest here by parents about vaccines...they just follow blindly like a bunch of sheep....I could go on and on about it, but what's the use, no one seems to listen around here

Hi Faith I didn't really feel a massive depression coming back or anything like that, when I stopped the Luvox. But then my luvox was to treat more anxiety than depression, although I had both. Also, Faith, I was taking it during the same time and probably for the same reasons as you, to deal with my anxiety about my sons TS. I would get massively anxious, mixed with some depression. What I really felt when I got off was totally spaced-out. My head felt like it was in another world. It is very hard to describe. My head felt muddled, not clear, like I was under water. I felt like I was high on acid or something - well, I've never taken acid, but my head just felt so weird, and yet I was not on the Luvox! I didn't quite put 2 and 2 together that this was withdrawal, because I didn't expect it. I forget what dose exactly I had been on but it was really low, like 1/2 tablet. My problem was, I just stopped taking it. I didn't feel I needed to titrate off, because I was on a half dose. My mother said to me later, you should have taken a pill cutter and cut that 1/2 tablet into quarters, or even smaller, and titrated slowly off that way, and she was right. I had no idea how stopping it would make my head feel so zombie-ish. I think I did feel a slight increase in anxiety, felt like crying a lot, maybe a slight increase in depression. Faith, the worst part lasted a couple weeks. Then I slowly -- very slowly, started coming back to normal. But it felt like it took a couple months or more to be completely clear, and I hadn't taken Luvox for that long, less than a year, maybe only 6 months. Could you try cutting your tablets in half, and then into quarters, and try going 3/4 tablet for a few weeks, and if you feel ok, go 1/2 tablet for a few weeks, then 1/4 tablet for a couple weeks, and see how it goes? Ask your doctor if this might be a reasonable thing to try. Then it will be very very gradual and maybe the depression won't hit you so much. Or you may find you can just stay at a lower dose (like 1/2 tablet) without going off completely just yet. But talk to your doctor first and see what he thinks. Good luck to you honey, I know how you feel when the waxing starts, it's tough for a mom to see, no doubt about it, it kicks you in the gut. But remember, the waning will come also.... lynsey

I took Luvox, another SSRI, for a short time to try and help with anxiety/depression. It helped only a minimal amount, and I started reading frightening things about what it could do in some people. So I thought I would get off it to be safe, and - oh - my - goodness. The withdrawal getting off it was horrendous, and I was on the lowest dose. It felt like my head was under water....the dizziness, the withdrawal symptoms were so scary, and it took weeks to feel back to normal. My sister is also on it, I told her to get off it, and she said she tried but the withdrawal was awful, so she is still on..... My first and last experience with SSRI's