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No Faith it's not her only tic, but it IS the most recent one and the one I worry about most cuz of school starting next month. She also has a blinking tic....that one was the first to emerge two years ago, but it isn't troublesome anymore.....I think i've just gotten used to the idea that HEY, if she blinks tightly now and then, so be it!! Yes i feel the throat clearing one picks up during eating and then continues to wax for a couple hours at least. She's pretty quiet first thing in the morning until she has her cereal. She did tell me it feels like she has "stuff" in her throat that she's trying to get rid of. Do you think this particular tic is caused by sensory issues? I'm still waiting on the NAC and L-Carnitine to arrive. Does ANYONE know, can those be given together? Thanks!

I thought I'd come here to "pick your brains" since everyone here is always so helpful and knowledgable. My dd, 6yo, started with a throat clearing tic back in May. At first it was not everyday or just occassionally throughout the day. What I've noticed lately though is that it gets much worse in frequency and intensity during or soon after eating. I just can't pinpoint a food or food group though. It seems it does NOT matter what she eats, it happens! This afternoon i thought I'd try some Benadryl...........just to see. The tics calmed down to minimal and quiet but she was also VERY sleepy. So i dont' know if the decrease was due to the antihistamine effect or due to almost knocking her out. About three hours later, at supper, they started getting more frequent and more loud. And that continued for two more hours right up til bedtime. I just feel at a loss of where to turn. I've ordered some L-Carnitine to give that a try. Also some NAC.......anyone know if those are alright to take together? Any thoughts on what could be causing the increase with meals?? thanks!!

I've never hear of that either, Melanie. So which meds is he on now that seem to be working for him??

Is it just the L-Carnitine or the Acetyl L-Carnitine that can be beneficial for vocals?? Is this the same amino that is suggested for eye tics as well??

UGHHHH.....THAT long?? I was hoping someone would say three or four days I have little patience as you can tell. What is that book by Doris Rapp (I think!) that explains the elimination diet? Sorry to be CLUELESS, but are there non dairy cheeses, yogurts, butter, etc out there??

Faith, I meant to mention that this is my daughter who does not have tics. Thanks CSP and Chemar for your suggestions. Is L-Lysine an amino acid??

Sorry about the VERY off topic post here. My 3yo dd currently has herpetic whitlow. Anyone familiar with this condition?? Basically it is the cold sore virus on her thumb. there's not much the drs have to help speed along the process. also what bothers me is this is the FOURTH time she's had it. ALWAYS on her left thumb too. she NEVER has had a cold sore that we've seen. I think, though, that that virus can be transmitted even when there are no apparent lesions. SHOULD i be concerned that there is some underlying condition that would cause this to happen four times now. the first incident was in nov of 07, the 2nd was in july of 08, the 3d in feb of this year and now AGAIN today. anyway, so many of you are so knowledgable in the field of natural cures......I'm wondering if there might be something i could try to shorten the duration of this?? Or prevent it from coming back in the future?? thanks!

I'm hoping some of you could offer some suggestions to help us start a trial of eliminating dairy. My thoughts are that I want to try a dairy elimination for a short time, and then a gluten free period. I'll post separately about the gluten free tips when the time comes. anyway, some things I'm wondering are how long should I eliminate dairy for to check for any changes? I am going to be trying this on myself as well as my 6 yo dd. She recently started a vocal tic about a month ago. for the previous two years it was mainly eye blinking we were seeing......hand sniffing too, though i'm not sure if that is a tic or a compulsion. is there even a difference? Also, besides the obvious, milk, ice cream, yogurt, butter, cheese.....are there any other foods I might overlook that DO contain dairy? my kiddos are cereal eaters in the morning too. what do you all think is the best substitute?? Soy? Rice Milk? Almond??? Thanks for ANY suggestions you may have to make this easier.

Myrose, would you mind sharing what the OT is for? Do you or DID you find it helpful the first time around? I really believe that some of my daughters tics/compulsions are sensory and i'm wondering if OT would take care of that?

CCC, DEFINITELY keep us posted. Are you in or near Maryland or will this be a long journey for you? I read some of your initial posts and see that you were working with a dr before on the aminos/vit deficiencies. I'm just wondering what his opinion is on this orthodontic device. Is he skeptical as i would expect most drs to be? or have you consulted with him on it? I am very interested as well in finding out more about this. some of what read in his study made sense.........especially the sensory stuff. I feel my mouth/teeth/tongue tics are a direct result of a sensory issue. Best wishes on this journey. You have NO idea how much i want this to work out for your child.

Kallik, i was giving my 6 yo dd the kids calm in her lunch at school. I'd mix it up in the am with juicy juice and send it to school in her lunch box. It didnt' seem to make her sleepy or anything. I found she drank more of it at lunchtime than she would at bedtime. Since your son is 12, you may want to consider the Natural Calm.....just has more mag per dose. I think the kids calm is ok to use for now, but if you do go to reorder it you may want to keep that in mind. Best wishes!!

Hi Mary, I did watch it and was a little disappointed. I just don't like when they ONLY focus on the most severe cases. I do like though, how they show the resilience of those girls despite their severe tics. I do wish they would've given more info on treatments they've tried, known triggers (they did talk a bit about this but i would've liked more), family history, etc..... I guess it would've been more like a three hour program though it they had gotten into all that!

Evol, I think this forum is great "practice" for talking about your TS. It has been for me anyway. You said your TS was a "secret" while growing up. I'm just wondering.....did you KNOW that you had TS or did you and possibly those close to you, wonder why you did what you did. were you able to keep your tics completely hidden in front of others? Did you have both motor and vocal tics? thanks for sharing your story, Evol.

Welcome Evol.....i know you will find the support you need here on this forum. I wanted to let you know how similar our stories are. I too have TS.....never formerly diagnosed b/c, like you, it was never talked about growing up. I suspect that's b/c it wasn't as widely known about as it is now. Or the ppl who did know about TS were only aware of the very worst symptoms. I remember being told to "stop that".....when i couldn't, i wondered why and with that came alot of shame. That shame/embarassment i carried with me until very recently. I am still trying to get past it at times. When it comes to my dh, he said he always knew i had TS, but the one time he tried to ask me about it when we were dating, i started crying. so he NEVER brought it up again. I guess the little goofy noises i made/make, were endearing in a way b/c he married me anyway. So 9 years of marriage go by and one day our dd (4 at the time) presents with an eye blinking tic. That is when I "came out of the TS closet". i'll always remember that first night we really TALKED about it. We cried like babies, read bible passages, held each other, and yes, of course worried about dd. That worry continues today, almost 18 months later; though she is doing pretty well. I have to tell you what an enormous weight was raised from my shoulders after we started talking about it. I spoke with my parents about it, my sister, my good friends, even people i didn't know all that well. I think you will find that it does get easier and easier to talk about. I was told by a cousin that these tics are such a miniscule part of my life that ppl that know me well probably hardly notice them. That made me feel so good b/c in my mind the tics were ALL ppl could see/hear. I thought when someone thinks about ME, they think about my tics. How refreshing to find out that wasn't true. Anyway, i do hope you are able to talk about it. If you are sooo worried about telling your husband, maybe you could talk to someone else about it first. I've been wanting to see a therapist for myself just to get over those lingering feelings of shame. I feel that if my dd is going to have TS, i want her to feel completely normal and most importantly able to talk about it openly, with anyone. I know how cruel kids can be (hey i taught 5th grade) and i think if a child with TS can be open about it and educate their peers, the teasing/bullying will be much less. Praying for strength for you to get through this first hurdle......so glad you found this forum.

Hey all, I just received some exciting news from my local TSA chapter leader. The Hallmark Hall of Fame Holiday movie will be "Front of the Class", a story of young man (Brad Cohen) with TS who became a teacher in Atlanta. It is scheduled to air Dec 7 on CBS, so set your TiVo. Tell everyone you know. The movie is being filmed in Sept in Shreveport, LA. Thought you would all be interested and hopefully as delighted as I am to hear about this positive public awareness opportunity for TS.

I've been wondering the same thing bmom. i know there are some states that accept the philosophical exemption, but unfortunately where we are now (SC) is NOT one of them. Only medical and religious. So for those of you in states like this, what DO you do? Also bmom, i don't THINK that varicella vac is mandatory. At least it's not here in SC and they seem to be very strict on keeping shots up to date. They say it's highly recommended to have the booster at 4-6 years of age but NOT mandatory for school. My daughter SHOULD be getting the second MMR, DTaP, and who knows what else. there are a couple more that are apparently mandatory. however no one has said anything to me yet.......maybe we'll slip through the cracks while i can get the titer thing figured out. does anyone know.....will doctors fill out a medical exemption for you? would i have better luck seeing an environmental dr to do that?

It's been forever since I've posted on here but i am still a frequent reader and find so much comfort in it. Thank you everyone for that! My daughter started kindergarten today! Her eye blinking tics have increased in intensity and frequency these last couple weeks. After her intial onset, the worst of it lasting three months, she had a fairly mild year. We would see the occasional blink at home, but her teachers in PreK never mentioned it. She wasn't taking any supps at the time but we were watching the artificial ingredients. I can't say we TOTALLY eliminated them, but we were trying to limit them as much as possible. We did get pretty lax with that this summer so i wonder if the last two weeks has anything to do with that. We also moved from OK to SC this summer so maybe new environment? Though I didn't expect environmental allergies to be any worse than OK. SO that's the a background.......the question i have is about MMR titers. I talked to her new ped the other day about testing her antibody levels for MMR, so we don't give her unnecessary vacs. She seemed to know what i was talking about but then said the problem with that is there is no "set number". Meaning to say, that one child could have immunity say with a level of x, but that same level for another child wouldn't indicate immunity. IF this is true, how can the states like NJ do this test instead of the second shot? I know there are some well versed vaccine members here, so any info you might have would be helpful. Also she said that pertussis is the only vaccine she knows of that people with neuro conditions should maybe avoid. I hadn't ever heard that........anyone know the reason? and now maybe an easier question, i found some taurine for myself. its from a company called "beyond a century". it is a powder...actually almost like crystal form. It says that 1/4 tsp is 750 mg. I see that most here who give it to their children give 500 mg. i am asking for myself, a 37 year old average sized female. 750 wouldn't be too much would it? so far, i haven't seen a reduction in tics, but it's only been four days or so. I think i read that taurine is effective for vocal tics?? or is the L-Carnitine better for vocal?

i had my initial appt with a neuro last summer after "coming out of the TS closet". It was pretty much a complete waste of time as he was very mainstream and didn't buy into all the "anecdotal" evidence i presented him from this website. I hope you will find someone who is more open. Neuros DO give prescriptions......the one I saw mostly talked about Clonidine and Neurontin I think, which I hadn't heard of for TS before. I declined the Rx at that time. I still haven't found much relief, but I'm not giving up. I would ask him about a PET scan if that's what you really want. What does that look for? Is it similar to an EEG or MRI? It can't hurt to ask about the Marinol. Maybe you'll find he/she is very open minded and if so, I want the name!!

The basic premise is that the gluten wears down the lining of the small intestine and causes small holes to develop. I hope I am posting this correctly.....i'm trying to quote just one sentence of a previous post by Caryn. Does anyone know if there is a test that would prove one had these small holes in their intestines? I don't know medical stuff much, but would an MRI or CT or something be able to confirm that? Also, to test for a gluten intolerance......am I correct in understanding it is done through an IgG blood test?

HI CP, Well I'm thankful I don't have to deal with my own girls dating......YET! Thought I'd tell you my own experiences though from my adolescent years. Like your husband, I wasn't labeled as having TS. However I knew I had strange "habits" and was sometimes teased at school......mostly people talking behind my back which I would later hear about from others. I don't ever remember anyone directly coming up to me and saying anything derogatory. anyway, I did date a boy seriously.....well as serious as you can be in highschool......for about three years. I just don't remember him ever asking me or referring to my tics at all. I had pretty good control over suppressing them but we were together alot so i couldn't do that all the time. For me, the tics didn't have any effect on dating. It just wasn't talked about. Hope that helps a bit anyway. Does your son have control over suppressing tics, especially vocal?

Thank you Faith and Trubiano for your replies. To answer your question Tribiano, this current antibiotic for the UTI she has just been on for a week. We only have about 4 days to go with it. Plus her excessive eye rubbing has been going on much longer.....I'd say about a month at least. It seems like when the tight tight blinking tic subsided, the rubbing started. I do not believe the rubbing is a tic or a compulsion in her case. Faith...my dd blinking tic also seems to slowly get better during the summer. If i do happen to see one, it's just that......maybe one or two at a time. Not one every 10 seconds like in the beginning. It just has me wondering if the blinking tic somehow caused some irritation that makes her want to rub or what? Or was she blinking b/c they were already irritated or her vision was poor? I am real curious as to what the opthamologist has to say.

My dd (4yo) has a UTI and the prescribed anitbiotic has phenylalanine in it. Even though her tic has been very minor to non existent over the last month and a half, I am worried this will cause something to flare up. Those of you that are pretty knowledgable in the bio chemistry field, what do you think? Am I worried over nothing? I should tell you, she's been on the antibiotic twice a day since last Friday and I have not noticed any increase. The other point i wanted feedback on is her eyesight. I was going to ask for an opthamology referral since i noticed that she rubs her eyes alot now. Sometimes I'll notice a blinking tic right after rubbing, but mostly this last month, I've only noticed excessive rubbing. Usually her right eye it seems. But before i coud request a referral her pediatrician said she WANTED her to see a specialist b/c her little eye test with the chart showed 20/30 and 20/40 vision. She said they like to refer at 20/40. So could this rubbing and the decreased vision be a result or cause of the blinking tic that started in the spring? I thought maybe the rubbing was possibly allergies (no testing done yet) but now that i hear her vision isn't perfect maybe she's just been straining her eyes. What do you think? Unfortunately i'll have to wait until oct 19 to get her in to see the opthamologist. In the meantime i worry that if there is an issue, it'll just get worse. Anyone else out there with a child who did the tight blinking and who also has poor vision? Thanks for all the input! Nadine

Here's an article that was sent to me by the TSA Chapter leader in OK. http://www.msnbc.msn.com/id/20429230/site/newsweek/ I was curious as to some of your opinions on HRT.

Thank you Chemar, for your opinion on the quackwatch website. Makes me feel better! After reading the Cell Food pamphlets, I thought MAYBE it would help with tics seeing it contains enzymes, amino acids, and minerals. The one I question though is tyrosine. Isn't that the one that will produce dopamine which TS patients DON'T need? Do you think there's enough of it in the Cell Food to give a detrimental effedt? I guess not though since you say your family uses it......I assume your son is too? What about the Tryptophan that's included in it? Would it still be safe to take 5-HTP since they are both precursors to serotonin? I haven't started taking either yet, just weighing my options. Speaking of options, what is the name of the metal detox you've used? Again Chemar, thank you, thank you for your endless wisdom and selflessness with your time! Nadine