? about Tourette's

[hornblower]

(I'm splitting off from Lovedtodeath's thread about kids starting off strongly & tapering....)

 

 

 

is it still Tourette's if it's under the person's control? This bhvr is not involuntary, in the sense that the person chooses when & where to do it.

There may be some compulsion to do it though but I'm uncertain about this.

 

Yanno, every once in a while it just hits me that I may have really strange children...... :001_huh:

[Angel]

I didn't make through all of lovedtodeath's post. However, my dd developed "tics" around the latter end of 5 and the early months of 6. She was later diagnosed with Asperger's. The tics were her form of dealing with anxiety or sensory overload. Her's were more facial movements and throat noises. Sometimes the line was blurred with whether she was doing them voluntarily or involuntarily. As she grew and we helped her cope with things better, most have disappeared. The few she has now would not be noticeable unless you are around her very often.

 

Don't know if that helps or not.

[EKS]

I believe that people with tics can repress them to some extent.

[....]

(I'm splitting off from Lovedtodeath's thread about kids starting off strongly & tapering....)

 

 

 

is it still Tourette's if it's under the person's control? This bhvr is not involuntary, in the sense that the person chooses when & where to do it.

There may be some compulsion to do it though but I'm uncertain about this.

 

Yanno, every once in a while it just hits me that I may have really strange children...... :001_huh:

 

 

Continuing the discussion from the other thread...

 

Yeah, I believe my daughter can control this (she makes a barking noise when she is irritated). She also snaps sometimes (instead of barking).

 

It seems to have more of an OCD flavor to me... :glare: This is never random. It's always a response to something external.

 

Don't worry, my kids are really strange too.

[Perry]

(I'm splitting off from Lovedtodeath's thread about kids starting off strongly & tapering....)

 

 

 

is it still Tourette's if it's under the person's control? This bhvr is not involuntary, in the sense that the person chooses when & where to do it.

There may be some compulsion to do it though but I'm uncertain about this.

 

Yanno, every once in a while it just hits me that I may have really strange children...... :001_huh:

From NIH

Can people with TS control their tics?

 

 

Although the symptoms of TS are involuntary, some people can sometimes suppress, camouflage, or otherwise manage their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed. Tics in response to an environmental trigger can appear to be voluntary or purposeful but are not.

 

 

 

 

If they are just doing it when they want to, and don't really feel a "need" to do it, it's not really a tic.

[....]

I didn't make through all of lovedtodeath's post. However, my dd developed "tics" around the latter end of 5 and the early months of 6. She was later diagnosed with Asperger's. The tics were her form of dealing with anxiety or sensory overload. Her's were more facial movements and throat noises. Sometimes the line was blurred with whether she was doing them voluntarily or involuntarily. As she grew and we helped her cope with things better, most have disappeared. The few she has now would not be noticeable unless you are around her very often.

 

Don't know if that helps or not.

 

 

Thanks for posting that. I had a meltdown about a week ago. I was convinced that two of my kids had symptoms of Asperger's. I think my daughter's barking is a reaction to irritation and sensory overload.

 

Could you give us some specific strategies you used for your daughter??

[Granny_Weatherwax]

I know about TS. Dragonrider was diagnosed with it in 4th grade. ETA: We have been to numerous physicians, psychiatrists, neurologists, general practioners, etc in our efforts to figure this thing out.

 

The tics associated with TS will vary from person to person. They will also morph into new and different behaviors within the same person (vocal tic, sniffing, eye blinking). They will wax and wane - sometimes within days sometimes within months. Anxiety, excitement and other strong emotions can affect the severity of tics. According to every specialist we have taken Dragonrider to TS tics are involuntary. Whereas a person with TS can repress the tics for a short time they cannot be controlled. Tic repression usually leads to an increase in anxiety and physical pain for the individual. When DS tried to repress his vocal tic he would be in agony (throat would hurt, neck muscles would spasm). The most recent tic was a severe head jerk (think whiplash). He could not control that under any circumstances. He was swimming in a lake and began to tic and the force of the head jerk dragged him under water. He was riding his bike to school (on the sidewalk), ticced, lost control and ended up in the street. These are just a couple of Dragonrider's tics - every person with TS will have a unique pattern of behaviors.

 

One thing to keep in mind - TS rarely occurs by itself, there are many comorbids that accompany it. The most common are ADHD and OCD. Dragonrider does not have ADHD but he does have OCD.

 

There are also other tic disorders that can be diagnosed that are not associated with TS.

 

This is an excellent book, Against Medical Advice.

This is also a good read, Front of the Class. This was made into a Hallmark movie starring Patricia Keaton (Everybody Loves Raymond) as the mom.

---

Ooooooh, I could kick myself. I leant two of my best TS books to a student last semester and didn't get them back. Ugh!

 

 

I am not sure what to write about TS. If you have specific questions I can look through my literature and see what I can find.

Edited May 12, 2010 by The Dragon Academy

[*********]

I believe that people with tics can repress them to some extent.

 

Zee has 'transient tic disorder'. Which basically means that every so often, he'll develop a new tic. It lasts usually for a few weeks, then goes away.

 

And, yes, he can supress it if he wants to. But no, that does not mean, to me at least, that when he IS doing the tic, it is because he WANTS to.

 

For example; during our fellowship on Sunday, ds did not cough once. Not once. He knows the expectations are that he will sit quietly and listen to the teaching; he knows that I would have to have taken him out of the room if he were to cough repeatedly, so as not to distract from the worship and teaching. So, he didn't cough at all.

 

Thing is, Zee developed a cough tic a few weeks ago. He had his yearly check-up last week; nothing's wrong with him. He doesn't NEED to cough, in that he doesn't have an medical reason to; except his tic disorder.

 

What I do to help him is to gently point it out to him when he has developed a tic. For example, once I was certain that the cough was a tic, I just had a conversation with him about it. He his aware enough now of what 'tics' are that he gets it. For example, when I said 'why are you coughing so much', he just says 'because I HAVE to, mommy'. Not like a 'I have to because there's something in my thoat', he 'has to' because he has the impulse to.

So, right now, whenever his tic flares, I just calmly say 'Zee, you're coughing.' I just bring it to his attention. Not naggingly, not excessively. But sometimes, if he is just made aware that his is doing his tic, that makes it possible for him to quit. I know the tic will be gone in a few weeks, so I try not to stress.

 

He's had a few different tics since I realized what they were. But he doesn't always have a tic he's struggling with. And I don't think that anyone besides those who live here would even recognize his tics as 'tics'.

 

According to my ped., he will likely outgrow it. She and I keep an eye on it, but it doesn't appear to be an indicator of anything more severe.

 

Wow, that got long. :D HTH!

[angela in ohio]

My dd has tics. We decided not to get further testing, though, based on the fact that they are moderate and not consistent. My sil went ahead and had my dn diagnosed with Tourette's, though, and he seems milder than dd. He is in school, so she needed that documentation, I think.

 

She can supress them and eventually conquer them with my consistent reminders. They are usually throat clearing, snapping, tapping things, or stamping her foot. She has them much less now as she gets older.

 

I had similar issues (had to do things the same amount of times on both sides, counting things) when I was an adolescent, and hd had sensory isues as a child, so we are pretty relaxed about it. I think that helps. :001_smile:

[Granny_Weatherwax]

I had similar issues (had to do things the same amount of times on both sides, counting things) when I was an adolescent, :001_smile:

 

Those behaviors are more indicative of OCD than Tourette Syndrome.

 

---

Being understanding of the behavior certainly helps. Your DD is lucky to have you as her mom.:grouphug:

[CAMom]

The tics associated with TS will vary from person to person. They will also morph into new and different behaviors within the same person (vocal tic, sniffing, eye blinking). They will wax and wane - sometimes within days sometimes within months. Anxiety, excitement and other strong emotions can affect the severity of tics. According to every specialist we have taken Dragonrider to TS tics are involuntary. Whereas a person with TS can repress the tics for a short time they cannot be controlled. Tic repression usually leads to an increase in anxiety and physical pain for the individual. When DS tried to repress his vocal tic he would be in agony (throat would hurt, neck muscles would spasm). The most recent tic was a severe head jerk (think whiplash). He could not control that under any circumstances. He was swimming in a lake and began to tic and the force of the head jerk dragged him under water. He was riding his bike to school (on the sidewalk), ticced, lost control and ended up in the street. These are just a couple of Dragonrider's tics - every person with TS will have a unique pattern of behaviors.

 

One thing to keep in mind - TS rarely occurs by itself, there are many comorbids that accompany it. The most common are ADHD and OCD. Dragonrider does not have ADHD but he does have OCD.

 

There are also other tic disorders that can be diagnosed that are not associated with TS.

 

 

 

:iagree: 100%!

 

My 17yo was diagnosed with TS just before his 7th birthday. His accompanying issue is mild OCD.

 

TS kids can suppress but that causes a lot of stress in their bodies and those tics will come out later. My son used to practice suppressing his during swimming lessons. The two or three hours after his lesson would then be a tic fest!

 

Tics are also greatly affected by outside forces. They may tic when they are angry not because they feel like it but because the stress of their anger causes it. My son would tic a lot when he was under stress. He will also tic when he's getting sick because of the stress on his body.

 

So, even though they may seem intentional under certain conditions, they are not. It's a response to some form of stress. My son describes it as a rubberband being stretched super tight. It eventually has to let go.

 

Don't assume it's "controlled" just because it may appear that way.

 

BTW, my son's tics have greatly decreased in this latter part of his adolescence. You can hardly even tell any more.:)

[helena]

The tics associated with TS will vary from person to person. They will also morph into new and different behaviors within the same person (vocal tic, sniffing, eye blinking). They will wax and wane - sometimes within days sometimes within months. Anxiety, excitement and other strong emotions can affect the severity of tics. According to every specialist we have taken Dragonrider to TS tics are involuntary. Whereas a person with TS can repress the tics for a short time they cannot be controlled. Tic repression usually leads to an increase in anxiety and physical pain for the individual. When DS tried to repress his vocal tic he would be in agony (throat would hurt, neck muscles would spasm). The most recent tic was a severe head jerk (think whiplash). He could not control that under any circumstances. He was swimming in a lake and began to tic and the force of the head jerk dragged him under water. He was riding his bike to school (on the sidewalk), ticced, lost control and ended up in the street. These are just a couple of Dragonrider's tics - every person with TS will have a unique pattern of behaviors.

 

One thing to keep in mind - TS rarely occurs by itself, there are many comorbids that accompany it. The most common are ADHD and OCD. Dragonrider does not have ADHD but he does have OCD.

 

There are also other tic disorders that can be diagnosed that are not associated with TS.

 

 

:iagree:

 

My husband and both daughters 8 and 11 have TS. While you may be able to control it a little bit, it is involuntary. I had to really help some people in our lives understand that it's cruel to ask or expect someone with TS to try to hold back tics.

It looks like you've gotten some good info and advice here.

:grouphug:

 

Here's an extra one for the mama lying in bed at night, mind spinning, tummy ache, worry time :grouphug:

[ChristusG]

I have tics. I have not been officially diagnosed with anything, as I do not feel it is necessary. So I'm not sure whether I have Tourette's, transient tic disorder, or what. Thankfully, my tics are rather mild....nothing extremely noticeable that will bring attention to myself.

 

My tics come and go. I'll have one tic for a few weeks, it will taper off, I may have a period of a few weeks with no tics, and then other one will begin. And so forth. Most of mine are things like rolling my eyes, blinking, wrinkling my nose, etc. They can be painful.....rolling your eyes over and over causes headaches, eye strain, blurriness, etc. They are NOT voluntary. And yes, I CAN supress them when needed. For example, if I'm talking to someone I do not know, I can refrain from rolling my eyes while I'm speaking to them. I don't want to appear strange or weird, so I refrain from doing it. The best way I can describe it is like an itch.....you can refrain from scratching an itch but the urgency builds and builds. It gets to where its all you can think about. You need to scratch that itch to get rid of that feeling and get some relief. That's how it is with a tic.

 

As far as bringing attention to the person doing the tic....I try not to. I know that when it is brought to my attention, I'm embarassed. I used to work with children in an after school program. Children notice EVERYTHING. They'd ask me why I was rolling my eyes or scrunching up my nose. It's embarassing to have it brought up. My daughter occasionally has a tic and I try not to mention anything about it.

 

But as far as your original question.....yes, they can be supressed but tics are not voluntary.

 

I know there are people out there with way worse tics than mine....there are people who jerk their arms around or make vocal noises....things that draw attention to themselves. Mine are much milder but they are still not fun to deal with.

[Granny_Weatherwax]

The best way I can describe it is like an itch.....you can refrain from scratching an itch but the urgency builds and builds. It gets to where its all you can think about. You need to scratch that itch to get rid of that feeling and get some relief. That's how it is with a tic.

 

That is a great way to describe it. Well said.

[hornblower]

So much good information here! Thanks everyone.

 

I'm still trying to wrap my brain around the 'tic' aspect because I'd always thought of tics as a small body movement or noise. Is it still a tic when it's a large body movement?

 

What I'm observing are large, whole body movements. I have one who skips in a repetitive back and forth sideways movement (kind of three skips to each side)

 

The other does what I call (in my head only, I've never said this out loud) "chicken flying": a skip/run down a hall or any open space with arms flapping from the elbows. This kid definitely prefers to go a farther distance before changing direction.

 

My dh is definitely a "walker" when thinking. He paces and needs to move to think so he's always just said that they need to move b/e they're thinking.....

[lisamarie]

So excess sniffing and eye blinking can be tics? My DS blinks his eyes a TON when he is nervous--when he had to sing in front of our church for a Christmas program, his eyes were just one big blink fest. He also develops this sniffing thing that drives me up the wall every now and then. I assumed these were just related to allergies, but maybe they're not. I am well aware that something is not quite right with DS, but haven't been able to put my finger on it yet. I was also asked by DS's old pediatrician if DS had been diagnosed with anything yet. (Old dr. goes to our church and is involved in the youth program and had DS in his class--asked me afterwards--I was a bit put off by that, but it did get me wondering if I should have him looked at eventually).

[angela in ohio]

Those behaviors are more indicative of OCD than Tourette Syndrome.

 

---

Being understanding of the behavior certainly helps. Your DD is lucky to have you as her mom.:grouphug:

 

Thanks!

 

From our research, OCD and Tourette's are related, so I do consider them related to dd's issues (as well as my ADD now.)

[angela in ohio]

The other does what I call (in my head only, I've never said this out loud) "chicken flying": a skip/run down a hall or any open space with arms flapping from the elbows. This kid definitely prefers to go a farther distance before changing direction.

 

"Flapping" (hands flapping from the elbows) is a sympton of ASD as well.

 

I'm :lol: at the "chicken flying" name. :D

[Angel]

Thanks for posting that. I had a meltdown about a week ago. I was convinced that two of my kids had symptoms of Asperger's. I think my daughter's barking is a reaction to irritation and sensory overload.

 

Could you give us some specific strategies you used for your daughter??

 

The first strategy was acknowledging that there was something going on, she wasn't just quirky. The second was trying to keep a mental list of the kind of things that set her off or made it worse. (If I was a list keeper, I would have actually wrote these down:D) Once I saw which situations or places set her off, I would start trying to pin down the cause. This was hard at first because she couldn't verbalize what she was feeling all the time. What we found out was dd needs to know as much information as possible every day. What is going to happen, when, how, where, how long, etc. Especially if it was a new activity. Information is her friend. The more she knows what's going to happen, the less anxious she will feel about it and the less reaction she will have. This is probably the one thing she hasn't grown out of. Her best friends have a mom who loves surprises. I usually have to find out what's going on before hand (dd will keep the secret) just so she knows what to expect. Basically, the same goes for the sensory overload as well, I just keep an eye out for what seems to set her off. Loud noises, bright lights, too many people, uncomfortable clothing, smells, food. So we buy clothes that she is comfortable in, she gets special consideration at the dentist, we try not to spend too much time in places that overstimulate and if we do we give her plenty of decompression time. It has really been about getting to know what gets her riled up and what will calm her down.

 

Early on she would open her eyes wide and wrinkle her nose. All. the. time. She would run her fingers over things and push her fingers up to her nose. She made some throat noises, some cat meow noises. She smelled everything! I was careful about what I tried to change...they can stop one action only to start another more irritating one...and pointed it out to her quietly if she was doing it in public as she grew older. Her last noticeable tic is not really even a tic, but I know she does it when she's anxious or overloaded. She picks/twists her one earring. Only the one side. And sometimes she talks super fast non-stop when nervous, excited, or agitated. Again, something only a few would realize as a problem.

 

I don't know if that helps or not. We make a lot of concessions for her that some people just don't get. And that's ok. Now that's she is older it's important that she know how to recognize it for herself and that she know when her body is telling her when it needs a break. We certainly live a more stable life with less meltdowns now that we know what to expect and why it is happening ;)

Edited May 11, 2010 by Angel

[StephanieZ]

(I'm splitting off from Lovedtodeath's thread about kids starting off strongly & tapering....)

 

 

 

is it still Tourette's if it's under the person's control? This bhvr is not involuntary, in the sense that the person chooses when & where to do it.

There may be some compulsion to do it though but I'm uncertain about this.

 

Yanno, every once in a while it just hits me that I may have really strange children...... :001_huh:

 

A person with Tourette's has the urge to tic similarly to when one has the urge to sneeze. One *can* restrain a sneeze, but it is very hard! Also, if someone with Tourette's restrains the tics, then they will typically come out much stronger later in the day. Typically, school children restrain tics at school, and then tic like mad when they get home.

 

Restraining tics is very stressful and requires a lot of focus. Restraining tics is hard and exhausting. Thus, the best "treatment" is to help the child not feel the need to restrain the tics. . .

 

FWIW, the combination of vocal and gross motor tics is the hallmark of Tourette's. If the tics last longer than 12 months, then, by definition, the child has Tourette's.

 

Tourette's is NOT always a horribly big deal. Don't panic!

 

So long as the tics are manageable and don't seriously impair the child's life. . . then there's not much to be done about it. The only medication options are hard-core dangerous drugs w/ serious side effects. So, not a reasonable option unless the tics are causing serious physical or mental pain.

 

Tics wax and wane over time, and might disappear altogether at some point.

 

PM me if you want more personal feedback. . .

 

HTH

[katemary63]

I have not read all the responses. I have Tourette's. I will try to tell you what a tourette's tic is like. Think about what it feels like when your eyelid twitches up and down rapidly all by itself. This is NOT what a Tourette's tic feels like. People with Tourette's can definately tic or not tic at any given moment. The tic is performed with volition. However, the compulsion or urge to perform the tic is so strong, and builds over time, that by the time a tic is performed, the individual will feel like they "couldn't help it" or "had no choice" but to tic. So it is different then a twitching muscle that just happens and one can't stop it or start it. Completely different.

 

If I were to sit and concentrate on the muscles that are involved in my tics, I could hold them still for a very long time. However, I would feel VERY uncomfortable and would not be able to concentrate on anything else. Once I go about my business, my tic will just happen. It takes much mental effort to NOT tic but it can be done. That is why it is NOT good for PS kids to try not to tic at school. Let me tell you, if you are focusing on not ticing, you are not learning. It is never recomended for a person to try to supress tics. Sometimes, if I am in a public situation where I don't want my tics to be seen, I will supress them. But once I get home, boy do I pay the price. I will tic so bad I'll be in terrible pain. It is much better NOT to supress tics. Just let them happen.

 

If you have any other questions, I'll be happy to answer them. I'm 46 and have had Tourette's since I was 7 years old.

[Lolly]

So excess sniffing and eye blinking can be tics? My DS blinks his eyes a TON when he is nervous--when he had to sing in front of our church for a Christmas program, his eyes were just one big blink fest. He also develops this sniffing thing that drives me up the wall every now and then. I assumed these were just related to allergies, but maybe they're not. I am well aware that something is not quite right with DS, but haven't been able to put my finger on it yet. I was also asked by DS's old pediatrician if DS had been diagnosed with anything yet. (Old dr. goes to our church and is involved in the youth program and had DS in his class--asked me afterwards--I was a bit put off by that, but it did get me wondering if I should have him looked at eventually).

 

Oh yes, we treated ds for allergies for over 2 years to no avail before we realized they were actually tics.

[Granny_Weatherwax]

I have not read all the responses. I have Tourette's. I will try to tell you what a tourette's tic is like. Think about what it feels like when your eyelid twitches up and down rapidly all by itself. This is NOT what a Tourette's tic feels like. People with Tourette's can definately tic or not tic at any given moment. The tic is performed with volition. However, the compulsion or urge to perform the tic is so strong, and builds over time, that by the time a tic is performed, the individual will feel like they "couldn't help it" or "had no choice" but to tic. So it is different then a twitching muscle that just happens and one can't stop it or start it. Completely different.

 

 

I am going to try to word this the way I am thinking it, which is with a desire to know and understand TS. Please don't misread it because I am truly curious about your experience with TS.

 

None of the doctors we have seen have said that the tics are performed with volition. We have always been told they are involuntary. Yes, they can be controlled up to a point but they are not done at will. I agree that it is different than a twitching muscle (no one can stop a charlie horse) but I don't think a person with TS can force a tic to happen. I believe anyone can repeat an action but that's not the same thing as choosing to tic.

 

Am I misreading what you wrote?:bigear:

[Granny_Weatherwax]

Here's a link to a site for children with TS. It has a great list (under the FAQs) of many of the tics seen in children.

 

This info. was given to us by a TS specialist and it is what we used to explain TS to the elementary staff and student body when DS was still in public school.

 

Like a previous poster said TS isn't always a big deal. Since we removed Dragonrider from public school his tics have decreased about 90%. He is much calmer at home and is happy. To be honest he hasn't ticced once since we visited his dream college in March; I think being there and seeing the possibility of an interesting future was the best thing for him. I hope and pray he can remain tic free.

[Orthodox6]

The obligatory soapbox:

 

Medications are not evil or wrong. I will not back down on this fact, after what we have witnessed over many years, for many people.

 

The properly-chosen medication at the properly-chosen dosage for the correctly diagnosed condition can transform a life from disaster to joyful success.

 

Medication has its correct role as part of an overall treatment plan consisting of multiple elements (behavioural, nutritional, and other therapeutic avenues). Sometimes no med is needed for a mild condition. In no way am I claiming that meds automatically are needed in all cases.

Edited May 12, 2010 by Orthodox6

[Orthodox6]

 

 

The other does what I call (in my head only, I've never said this out loud) "chicken flying": a skip/run down a hall or any open space with arms flapping from the elbows. This kid definitely prefers to go a farther distance before changing direction.

 

...

 

I believe that the arm flapping is very common in autism spectrum. The hyperlexic boy whom we knew often did this.

 

So many health conditions overlap, often rendering diagnosis difficult. OCD overlaps Tourette's. OCD overlaps Asperger's. Asperger's overlaps NVLD. . . . What I always thought was the OCD part of my "personal package" actually aligns better with Asperger's. Had I not had an Aspie son, I never would have known this. At least I know by now that the palilalia which has annoyed me all of my life is an Asperger's symptom, not just something weird.

[Granny_Weatherwax]

So many health conditions overlap, often rendering diagnosis difficult. OCD overlaps Tourette's. OCD overlaps Asperger's. Asperger's overlaps NVLD. . . .

:iagree:

It amazes me how things overlap. It certainly makes life interesting.

[ChristusG]

Yes, the flapping doesn't sound like ticcing....it sounds like stimming, which comes with autism.

[katemary63]

I am going to try to word this the way I am thinking it, which is with a desire to know and understand TS. Please don't misread it because I am truly curious about your experience with TS.

 

None of the doctors we have seen have said that the tics are performed with volition. We have always been told they are involuntary. Yes, they can be controlled up to a point but they are not done at will. I agree that it is different than a twitching muscle (no one can stop a charlie horse) but I don't think a person with TS can force a tic to happen. I believe anyone can repeat an action but that's not the same thing as choosing to tic.

 

Am I misreading what you wrote?:bigear:

 

I understand the confusion. I am just trying to help you see that fine line that Tourette's people experience. The word INVOLUNTARY can really mean two different things. The eye twitch is truly, totally and without question, involuntary. A tourette's tic is not like that at all. But, a tic MUST BE PERFORMED at some point, so that is also under the realm of involuntary, yes? But still, not the same and a twitch. You can't choose never to do your tic. But what I'm saying is that I actually DO the tic. The muscle just doesn't just convulse all on it's own. I do the tic because I must. But I do do it. Now, when I am going about my everyday life, the tics just happen. I'm not thinking about them. It is really very automatic, like turning on the blinker in your car when you approach a turn. You don't think about it. You might not even remember doing it. But YOU did do it. Your arm didn't do it for you. Like this, it's not at all like a twitch in your eyelid or like your thigh muscle twitches after a long run. It's just so different than that, that I wanted to make it clear if someone was thinking that that's what it was like.

 

 

It may be true that other's with Tourette's experience something different? I don't know. I do know that while my tics are mostly simple tics rather then complex, and they are not terribly noticeable to the average person who encounters me, I do do them thousands of times per hour and suffer terrible pain from muscle soreness and irritation. The only way I can get relief sometimes is just to go take a nap. Thank GOD we don't tic in our sleep! I'll wake up a bit refreshed and less sore.

 

 

BTW: I tend to think one's eyelid just might twitch in one's sleep and one wouldn't even know it. But a person has to be conscious to do a tic. Maybe that helps to explain it.

 

Edited to add: I had one more thought: When I was little and undiagnosed, I remember thinking, "Why am I doing that with my arm?" I never thought, "What is happening to my arm?" or "What did my arm just do?" Do you see my point? I agree that a tic is involuntary in that a person MUST perform the tic. But a tic is NOT involuntary like your heart beat or breathing.

 

Another thought....The two MOST important things to do to lessen the severity and frequency of tics are 1. Good, hard, sweaty exercise every single day! 2. Get lots and lots of sleep. Do NOT let yourself get exhausted. These are the ONLY lifestyle choices that have ever made a difference for me. I could say to avoid stress, but life comes with stress and no one can completely avoid it, so, at the very least, exercise and sleep!

Edited May 12, 2010 by katemary63

[Granny_Weatherwax]

Katemary63-

Thank you so much for the clarification.

 

Sleep is a welcome respite here in our house. We have also reduced the amount of sugar and caffeine in DS's diet. DS has learned relaxation techniques (diaphragmatic breathing and walking away, if possible) in an attempt to reduce stress levels.

[TengoFive]

My ds10 was diagnosed with Tourette's about 4 years ago. Last year the pediatrician recommended taking out his tonsils and adenoids as some kids/adults have a tendency to develop neurological problems in response to strep, specifically OCD and Tourette's (that I remember.) She also recommended having the other kids taken out as well, to make the house as strep-free as possible. We did that about 18 months ago, and ds has not had a tic at all since then. Not one. I am so glad our pediatrician was well-enough researched to recommend this. It won't work for all kids, but it did work for mine.

[ChristusG]

I agree with KateMary. My tics are involuntary, but not the muscle twitch type of way, as she mentioned. I have to make myself do it....but I must do it. It's not like I can say "Well, I just wont do any tics today." It just would not work that way.