Nonstop tics

[JMT]

I'm wondering if anyone else has a child that seems to tic more often than not tic. My 10 year old daughter very often will tic pretty much nonstop all day (tic started 6 months ago). She has a facial tic (includes eye blink and nose and mouth twitch). She sometimes complains her eye hurts from doing it. I'm just so frustrated that there is nothing to help her. The neurologists act like there is nothing they can or will do. They wax and wane by the way, but there are weeks when they are just nonstop. I know medication may not be the answer, but it seems like there would be some medication worth taking. I don't think her tic is environmental as her father had the same thing, and still does although very mild and hardly noticeable.

Thanks for listening.

JMT

[faith]

Hi JMT,

Just wondering if you have found a natural doctor yet? Also, have you tried any dietary strategies or supplements? It is possible that during the times you notice waxing, maybe she is constantly consuming something that is not agreeable to her system? Even tests are not 100%, but you could try a litttle elimination of obvious things like first dairy for a few weeks, then corn products, then wheat/gluten. You never know, you may see an improvement from this type of elimination. Trial and error is really the only way. Did you ever start her on the med? Or no?

 

As I said, it is really alot of experimentation, but go with your gut, and try some different approaches that you read about here, maybe something will resonate.

 

Faith

[Chemar]

Hi JMT and welcome to Latitudes/ACN

 

your child may well have hereditary TS or another tic disorder, but that doesnt exclude environmental factors from possibly playing a very big part in the intensity and frequency and duration of the waxing phases

 

my own child does have genetic TS, but I have most certainly seen how everything from every aspect of diet and nutrition to fluorescent lighting, dusty rooms, gasoline fumes, perfumes, chlorine, extremes of heat and cold, illness, stress, and a whole host of other environmental factors are the things that make all the difference imaginable as to whether his TS manifests severely or mildly

 

when we slip up on diet, or when he is exposed to his specific triggers, of which I have listed only some above, things get worse for him. When we are diligent in providing his body with the diet and nutritional supplements he requires, he has a MUCH better time, with only occasional and passing tics, instead of continuous and wide ranging phases that come with his triggers.

 

We had a disastrous year on prescription meds, and I would certainly list them as possibly his biggest trigger ever!! And we tried a number over that year.....I still cringe when I think back on it

 

That is one of the reasons that I volunteer my time and experience here at ACN, because the difference in my son now and then is so amazingly positive, and I feel it is my absolute duty to let others know there IS another way to help with TS and tics. This site is filled with testimonies of people who have seen remarkable improvements with alternative treatments, and also those who have finally started seeing results because possibly there has been misdiagnoses, and it is actually strep, or allergies, or photosensitivity or deficiency in essential nutrients, etc

 

Cheri

 

 

 

 

They wax and wane by the way, but there are weeks when they are just nonstop. I know medication may not be the answer, but it seems like there would be some medication worth taking. I don't think her tic is environmental as her father had the same thing, and still does although very mild and hardly noticeable.

Thanks for listening.

JMT

[Cum Passus]

Hi JMT,

 

You know when my son was at the peek of puberty he was ticcing non-stop too. It was so bad we couldn't even tell when a waning was happening. For him that was almost his whole 12th (age) year.

 

I was wondering... my oldest daughter was going through puberty at 10. Are you noticing your daughter haveing alot of female changes going on? I think the hope for you is... I don't believe girls take as long as boys do to go through their changes.

 

I tell you I'm on pins and needles this week I have seen my youngest daughter (turned 10 in Feb.) start blinking, and doing something with her tongue. I'm trying REALLY REALLY hard not to lose it.

 

My 15 year old told me this week that life here on earth is a really short time, and God is so good he is only giving our family this trial for a small amount of time. And I have eternity to thank Him that TS was only a blip of our time. (Out of the mouths of babes)

 

Keep us posted I woud love to hear how things are going.

C.P.

[patty]

CP,

 

Have faith, be hopeful and hope for the best. I believe your daughter is fine.

 

Patty

[Jeff]

Hi JMT, You should definitely try the natural alternatives before trying meds. It may be something as simple as dietary changes.

For us, eliminating artificial colors and flavors from our diet has made a huge difference in our tics. We went from ticcing almost all the time, to hardly ever ticcing, and luckily, we never had to go the "meds" route. Look at the ingredients on the labels of foods your daughter eats. If you see anything like "Red #40", or Yellow #5, etc... any of those colors, then get rid of that product and see if you can find an all natural substitute. Shop at natural food stores, or at a Whole Foods, if there is one nearby. Organic foods are usually safe, too.

 

Avoid candies like Twizzlers, M and M's, or Skittles, cereals like Trix or Lucky Charms.. any of those "colorful" foods. Once we eliminated those items, my daughters' tics stopped within a couple of weeks.

 

It can be difficult at first, but it gets easier. We joined the Feingold organization (feingold.org) and learned a whole lot about what those additives can do to us.

Good luck. Jeff

[powerofprayer]

I just wanted to re-iterate what Jeff said. When I first found this website, Jeff's post about artificial colors was the first one I read. I thought that sounded easy enough to try. I have seen at least a 50% decrease in my daughter's tics (which began just 4 weeks ago....she's 4yo) I have been trying to eliminate anything with the "red", "blue" and "yellow" since about May 8. I do have a question about "natural flavors". sometimes it just says that in the ingredient list.........is that OK to give?

I'm wondering what else I could try to see an even bigger decrease in her tics? I haven't done the Kid's Calm yet........should I? Or a good mulit-vitamin? Eliminating the arificial colors hasn't seemed to have an effect on my own tics though. I've started a B-100 complex, but I haven't seen any difference there either. What are some of you adults with TS taking as supplements. I was in the health food store today and it was so overwhelming just looking at all the magnesium options there are

Open to any suggestions,

 

Nadine

[Jeff]

Hi Nadine, "Natural flavors" should be okay. Other things to watch for are 3 specific preservatives... BHA, BHT, and TBHQ. The Feingold Program does eliminate those 3, and we have seen effects from them in ourselves. You should also try to eliminate any artificial flavors. A commonly used one is "vanillin"... - an artificial flavoring.... "vanilla" is natural, and is okay.

One of my daughters reacts to too many salicylates. Those are naturally occuring, and unfortunately are common in many fruits. My daughter reacted to tomatoes, apples, and strawberries. We limited her consumption of those fruits. It might take a while for you to see results in yourself. There is a "withdrawal" period, and for some, the symptoms can get worse before they get better !

Caffeine is another trigger... if I have too much coffee in the morning, I start to tic that same day... usually within a couple of hours.

Hope this helps. Keep reading those labels. You might still be using a product that has artificial colors / flavors.

Jeff

[faith]

Deleted

Double post

 

 

 

Faith

[faith]

Deleted

double post

 

Faith

[faith]

Jeff, (and others)

thanks for that reminder about the caffeine. I've been feeling like I am more twitchy than usual and am realizing I'm probably having too much tea.

 

Also, I just want to get a better idea of what "more tics" means in adults. (Because we don't really want to open this discussion with our young ones). When you say you start ticcing more, do you mean the "urge" to do your particular tic increases? And when ticcing "less", I assume you feel calmer and the "urge" is not as strong? All replies welcome. When we see more tics in our kids, we kind of assume it just happens, but what I'm trying to get at is "what" makes it happen--a strong "urge" to complete the movement in an attempt to relieve the tension that is felt? I mean, as an adult, could you control this a little if you had to, I mean ilike if you were talking directly to someone and didn't want to make it obvious (although it would probably be very uncomfortable and tension building)?

 

Don't mean to pry, but just trying to get a sense of what this is like for adults.

 

Thanks

Faith

[Jeff]

Hi Faith, More tics for me means, yes.. more urges to tic. There is a sensation in a specific location of your body, and the "tic" will satisfy / relieve that sensation.

I can NOT do the tic if I don't want to, but the urge will continue, and I will eventually need to do the tic. It's kind of like an itch... you can NOT scratch it, but the itch will continue until you scratch it.

 

When I'm "ticcing less"... it really means that I'm not getting those sensations or urges as often, and therefore don't have to do the tic as often.

 

Hope that helps....

Jeff

[powerofprayer]

Faith,

I agree with Jeff......for me I get that strong urge and it's like a tension release when I do the tic. However sometimes for me, a tic will "just happen" and I hadn't even felt it coming on. And yet other times, if I've had a "calm" period, suddenly it'll enter my mind that I haven't "ticced" in a while so I'd better do something ( a tic) even though I didn't get that "urge". It happens cuz I was thinking about it......that's what i think. I'm sure this sounds totally off the wall. Can anyone relate?

[kim]

It happens cuz I was thinking about it......that's what i think

 

This might be a little off topic for what you all are disscussig here, but Nadine's remark made me think of something. My oldest son and I were watching a news segment about a race horse. The horse shook his head, then my son did it, just like the horse. It made me think about "suggestive" tics.

 

I have recently read a bit about mirror neurons. This short video talks about autistic children, possibly have broken mirror neurons. It occurs to me, that people with TS might actually have overactive mirror neurons. A 23 year old young man, posted on another group recently, about literally being able to feel physical pain, when someone is describing something that had happened to them. He said he has always had the ability to "feel" what others are feeling or describing. He was making these remarks casually. It also made me think about my own boys and how my oldest son especially, has unusual perception in regards to people and emotions. Anyway, here is a link to the video, in case anyone can relate

 

http://www.pbs.org/wgbh/nova/sciencenow/3204/01.html

 

JMT, Since you mentioned the eye blinking, I thought I would include this. I had never seen this before and thought it was interesting. I think this is the link to the article (it was copied to a saved file and some of mine get pretty messy, since one thing always leads to another, and I end up with tons of links and excerpts on one notepad)!

 

http://www.springboard4health.com/notebook..._autism2.html#7

 

An interesting way to assess dopamine levels clinically is to count the number of blinks per minute. The average number of blinks is 15-30 per minute. The blink rate has been found to vary with the amount of dopamine present: the more dopamine, the more the blinking rate and vice versa.

[itsme]

There has been 7 - 10 days ver the past 20 yrs that i have been able to go thru the day nearly tic free - meaning i ticced 5 - 10 times instead of 4 or 5,000 times. The first time this happened is when i was 23. I remmember well. I woke up around 9:00 am, went out and sat on my chair to do some reading (college cramming!) and the thought came to me "i'm not going to tic". Now i thought this many, many times in my life before - in fact pretty much every day. So i don't know exactly what was different about thbis day. I do knopw that as i kept this thought with me and in particular as the minutes passsed by i felt more and more empowered. When 10 minutes past, i knew this was very abnormal for me to noe have ticced. 30 minuted past - AMAZING!! 1 hour and so on thru the day. The urge to tic was stongest the first few minutes and dissipated emensly after an hour or two.

 

As i said this happened maybe 7 - 10 times over the last 20 yrs. Another time was when i took bontech supd a couple yrs ago. First day tics were down 98%, second day down 90%, third day 80%, And it just kept dwindling to nothing. Maybe just the placebo effect?? Either way, uite disappointing and at the same time it gave me some hope.

 

I do not believe that these little breaks are "waning" days. I think there is something more to it. I'm just not sure what it is??