Newspaper article

[Guest Jeff]

A local newspaper is going to publish an article about the Feingold organization, featuring my family. I just reviewed (over the phone) some portions of the article with the reporter, and corrected her on one thing. She was going to describe the tics as "uncontrollable body movements". I asked her not to say that, as, for me, they ARE controllable. That is, I can NOT do the tic if I make an effort not to. It's similar to having an itch. Just as you can choose NOT to scratch the itch, you can choose NOT to do the tic. However, the sensation remains, and you cannot resist the tic (or the scratching) forever!

In most cases, I wait till noone is watching to do the tic.

Anyway, I'd be curious to know if you other "tic'ers" would describe it the same way, or another way. I just did not want the article to make it sound like our bodies are just twitching uncontrollably. The sensation is not controllable, but the tic is...

Jeff

[Claire]

Hi Jeff,

 

I hope there is a link to the article, it is good to hear that you are spreading the word.

 

I agree sensations are uncontrollable, but the tics can be controlled for some--at least temporarily.

 

For some, I don't think they actually can contol their urge to tic--it is too strong. Especially when their mind is on something else, or the trigger is unusually strong, they are not likely even consciously aware that they are doing it.

 

When my son had tics, he could only control it for a very very short time. It may be the difference for an adult, or for severity of the urge.

 

Claire

[Heather]

Jeff,

 

I would be very interested in reading the article as well. As Claire said, it is great you are spreading the word.

 

I do understand what you are saying, however, when my son's tics were at their worst, there was noway he could hold it for any length of time...even a few seconds. Now, I do believe he has some control, however, when he is stressed and in certain situations, he has absolutely no control over his tics, no matter how hard he tries.

 

Heather

[Heather]

In my mind, my son's body IS twitching uncontrollably. He is only 7 so maybe the age makes a difference in how you view it.

 

Heather

[Guest Jeff]

Interesting responses. I agree that age and severity must have a strong bearing on the degree of control that one has. Speaking only from my own experience, I know that I DO the tic. My body is not uncontrollably twitching - like sometimes I do get a twitch in the muscle above my eye. For whatever reason it twitches uncontrollably. But I know that that is some kind of muscle spasm that I cannot control; it is not one of my tics. And it eventually goes away (after driving me crazy for a while!!).

 

With tics, though, I DO the tic to make the sensation go away. I can NOT do the tic, but the sensation continues to annoy and I eventually do the tic. If I'm really reacting (although it's been a while since I've had such a bad reaction), my control is less strong, and the frequency is greater.

It's really an interesting discussion. And what makes it more interesting to me is that, in our case, something like food additives increases the severity and frequency of those sensations, or the need to tic.

 

That reminds me that the other night I saw a commercial for Stonyfield Yogurt, where someone had a flask of "red 40" that they were trying to burn or bury or something. The flask began to burn and create a big red smoke cloud. The spokesperson then talked about how they don't use any artificial colors or flavors, yada yada yada. I was so happy to see that dig at Red dye #40!

 

I'll see if I can get an electronic copy of the article.

Best regards. Jeff

[Claire]

After more thought (even before reading Heather's post), I think

"Uncontrollable" is the right word for many if not most ....as opposed to "Involuntary".

 

Claire

[Guest Guest_Julie]

The way my 7 year old son describes his tics is that he kind of knows when it is coming but when he tries to stop the vocal tic, he feels like he is going to die. And so I believe that he can't really surpress it and therefore it is uncontrollable.

 

I think that many people do not understand what it's like to have a tic as I can only describe it by what my son shares with me.

I find that teachers and other adults sometimes think it is something they can control and asks them to stop it. Therefore, I think it would be good to say that some of the tics are uncontrollable.

[Heather]

Julie makes a good point in saying that sometimes teachers or other adults may feel that the child can control their tics and that is entirely wrong.

 

I definitely do not want the idea out there that my son can control his tics in the classroom if he surpresses the sensation he is feeling.

 

His tics are definitely uncontrollable and it would be devastating to him if someone told him that he had to stop by surpressing the sensation. We allow him to tic freely and rarely talk about his tics and he is far less stressed when he knows it is not a big deal to us.

 

Heather

[Chemar]

Just a quick thought to add to this very interesting discussion....

 

the need to tic sensation for someone who has TS is possibly very different than the need to tic sensation for someone with a tic disorder that is not TS.

 

My son has explained that it becomes HORRIBLE to surpress a TS tic for any length of time....not just a need to sensation but a HAVE TO urgency.

And sometimes, nomatter how hard he may want to surpress a sound or movement say in a social environment...he simply CANNOT.

[Guest Jeff]

My apologies if I've offended anyone. I didn't mean to make it sound like I can stop tic'ing whenever I want (or especially that your children can stop whenever they want). No, that is not true. I can suppress it for a few seconds if I concentrate; however, I cannot suppress it indefinitely. Eventually, I HAVE TO DO the tic. My point was that my body is not moving and squeaking all on its own. Each tic is something that I DO -that I MUST do in order to relieve a specific sensation.

Trying to suppress it for a long period of time would be tortuous.

 

I just do not like the word "uncontrollable movements" to describe the tics. My body is not doing those things all on its own without my knowledge. I am DOING each tic in a specific way to relieve a specific sensation. That was my only point.

 

Now that we have discovered our triggers (artificial colors, flavors, corn syrup), we are very mild tic'ers, so we can often "hide" our tics by doing them when we think noone is looking. However, when we are reacting, and the sensations are coming faster and harder, there is no hiding them.

 

Believe me, I'm the last person who would say that a child could "Stop doing that". I have heard those very words directed at me, and I know that it is impossible. I have heard my daughters' grandmother say the same thing to them, and naturally I come to their defense, knowing that they cannot "quit that".

 

Respectfully,

Jeff

[Claire]

Jeff,

 

No one took offense! The terminology is tricky--thus my term uncontrollable vs involuntary. It can sound like seizures otherwise. You are doing well to try to clarify.

 

Maybe urges to tic that are uncontrollable in intensity???

 

Claire

[Guest Jeff]

Claire, That's a good distinction - the URGES (or needs) are uncontrollable.

However, if you are lucky enough to identify some triggers and eliminate them, you can reduce the frequency and intensity of the urges.

That's what burns me up about the artificial colors, etc. What is it about them that increases my urge or need to tic???? And why can other people consume them with no apparent effect!?

Well, I don't suppose I'll never know the answer to that question, but I feel extremely fortunate to have discovered what "makes me tic" so to speak.

 

I would sure like to see TSA supporting / funding scientists that will study why tics are sometimes triggered by TV screens, food additives, etc., instead of which new medicine they can come up with.

 

Jeff

[Heather]

Jeff,

 

I am unsure of your history since I didn't see your posts when you first started writing on here, so I don't know if you have the true Tourette Syndrome that is genetically passed down or if you have developed tics because of other factors.

 

However, if you read some of the posts on here, you will see that THERE ARE answers as to why people tic and that is because there is a chemical imbalance in the body caused by yeast, heavy metals, pesticides, etc.

 

The theory of the naturopaths is that this chemical imbalance can be corrected so that you are once again able to tolerate those offending foods and that is the goal that many of us are working towards. Once the body has detoxed, it should be able to handle the triggers without causing a tic reaction.

 

I know your treatment is to remove the offending triggers (Feingold) so that you won't tic but I have never read in your posts where you have tried any supplements to help your situation. Have you attempted to detox your body? If so, what did you use?

 

Heather

[Guest Guest_efgh]

Jeff

 

As per Feingold diet tomatoes belong to the group of offending salicylates. Do you or your kids tolerate tomatoes well? My son was doing fine for the past 3 months but since two days his tics are a bit MORE noticeable .. I dont know if its due to the extra tomatoes intake the past two days. any views?

Jeff, do you have vocal tics too?

 

Others

 

How about your kids with regard to tomatoes intake vs tics? your thoughts please..

 

Heather

 

for how long has your son been on threelac and NDF. do you give them on a daily basis or is it just a course? do you keep him away from dairy?

 

thanks.

[Guest Jeff]

efgh, We noticed that my oldest was reacting to salicylates. She loved tomatoes, but we were seeing reactions when she was eating them frequently. Now (she's 12) she can tolerate them once or twice a week with no apparent effect. However, if she eats tomatoes, we try to keep her off other high-sal foods, 'cause if she overdoes it, we see ticing and some behavioral stuff. My wife doesn't agree with me, but I think that when she has too many sals she gets whiny, over-emotional, and un-motivated.

I have a "squeak" tic, though I don't know if would be considered a vocal tic. It's a sensation in my airway, and the tic causes a slight squeak or gasping sound.

 

Heather, I have never been diagnosed; however, my blood-nephew has been diagnosed with TS. When I heard that (in my 40's), I realized that must be what I had had all my life. We don't know of anyone in past generations that "tic'd", so that is puzzling. But both of my daughters started to tic at around age 6 or 7, so we know there is something genetic going on. My father has Parkinson's, so there might be a link there.

No, I have never tried supplements or to detox. In fact, I never knew about that until I started reading this forum about a year ago. I might consider that some day, at least for my girls. However, since we do so well with the elimination diet, I'm not real motivated to go down that path right now. As long as we avoid the triggers, the tics are not an issue.

 

Jeff