Your experiences with Tourette's Syndrome

In My Humble Opinion
1

So…it appears my son may have Tourette’s Syndrome, at least according to his pediatrician. It’s pretty mild - just occasional ticcing that waxes and wanes, but is occasionally quite noticeable.

Anyway, the ticcing has been going on for about a year and a half now and just hasn’t entirely gone away. I should know by Monday, but even if it isn’t TS, he’s probably got something going on. The doc says that most boys with a tic disorder grow out of it by their early to mid-teens and that it’s really not a cause for concern, but I was wondering if anyone on the board has ever dealt with a tic and what helped in doing so and what was potentially damaging (such as assuming the kid can voluntarily control it)?

Also, did you need a special education plan? How did that work? Assuming that he does get diagnosed with an issue, I’m going to speak with his teacher next week just so she’s aware whether or not they feel an education plan is needed. I’m on the fence as to whether or not it would be at this point - he’s 9 and so far his tics haven’t caused him any social or educational difficulties, so what’s the point?

Sorry for the stream of consciousness post - I’m still trying to wrap my head around how to help him and the possibility that he might have a neurological problem. I have epilepsy and my husband had something like TS when he was a kid, so I would’ve been surprised had at least one of our kids NOT had a problem. Anyway, thoughts? Recommendations?

2

I think it may depend on what you ate decribing as a tic. I have seen quite a few kids get into annoying habits of making sounds with their mouth or fingers and then grow out of it.

Kids that suddenly unload with the off the wall comments that are completely out of context with what is going on around them tend to stay that way from the few that I have known.

I know of one case where a young man was diagnosed with TS but actually had form of schizophrenia.

3

Gotcha. When I say “tic,” I’m referring to his frequent head jerking - he’s never just unloaded with inappropriate language or out-of-context phrases, which is apparently an extremely rare form of the syndrome. It used to be a full-body tic, but kind of quieted down over the summer and returned - only differently - with the start of school. He tends to tic more when he’s not really engaged in anything and far less than when he’s really absorbed by something. It never entirely goes away, though, and genuinely does not appear to be within his control.

Here’s a fact sheet on Tourettes.

Here’s a good description from WebMD as well:

4

I don’t have very much direct experience, except for some…connections I have with a charity in New York working with Tourettes.

I’ll PM you with their information, in case they have anything useful on their web page.

5

I’ve never been diagnosed with Tourette’s, but I probably could get such a diagnosis if I wanted to. I started developing tics when I was probably about your son’s age, and now in my early 30s, I still have them.

From my point of view, the tics feel like a voluntary action in that “I” am doing them – it’s not like a muscle spasm where the body seems to move on its own – but I’m doing them in response to a sort of irresistible urge, a kind of “energy” that builds up and needs to be relieved by making these motions. Over the years I have learned to redirect the tic energy into less noticeable movements, like flexing my abdominal muscles or wiggling my fingers and toes, rather than twisting my neck or my arms. I also blink a lot.

You can live with minor tics and physical compulsions and still be a very successful person. Two of the best college professors I have had were a married couple; the husband cleared his throat after every sentence and the wife was perpetually playing with her hair. :slight_smile:

Does your son sing or play a musical instrument? I have found these practices very helpful in learning to control my brain and body!

6

That’s more or less exactly what he’s described, WF Tomba. He’s said that he feels when the compulsion starts - an itching, tingling sensation - and he can hold it back, but eventually he can’t hold it back and feels like he has to do it or the sensation won’t go away. When he completes the action, it goes away until it builds again.

He plays viola at school and we were thinking about getting him back into piano (he tends to like the idea of playing more than the actual playing part), but have primarily focused on sports - baseball to be exact. He loves baseball and the activity seems to reduce his ticcing, too. I’m looking for a winter sport (maybe indoor swimming or soccer) he can participate in to help him - so far I’ve been taking him running or walking with me in the evening, which he seems to enjoy, but not quite as much as something with peers. Plus, it’s getting cold and I don’t want to drag him outside if that sensation is going to be unpleasant.

7

My husband has TS and it didn’t really manifest itself, that he can recall, until he was in his early 20’s. His tics consist of blinking, opening and closing his mouth in ranges from very wide to barely noticeable, making sounds when he opens his mouth but not any body motions. He is very self conscious about it and I know that he tries very hard to hold it in, but like your son and others have mentioned, its just a feeling that you cannot avoid and at some point you need to let it all go.

It reaches its peak when he is very stressed or having an anxiety attack, which isn’t too often, however he once had a voluntary lie detector test administered and he had the worst attack ever. He couldn’t stop with his mouth/sound movements, and blinking his eyes. It was almost so bad that he couldn’t communicate and he was very upset and frustrated. When he goes through these periods of tics, he can end up having chapped lips and a dry mouth from the anxiety. But other than that, there are no other physical issues and he had a very long and successful run in semi pro football for 8 years when it first came on.

His younger son seems to have TS but he just does a little head/neck jerk every once in a while.

Regarding the IEP, in my experience with a child on the autism spectrum, and his siblings that outgrew their developmental delays (speech impediments, social delays), its a good idea to have something started in the event you choose to enhance his accommodations or learning goals later on down the road.

8

I developed tics in my early 20s. They didn’t start being problematic (embarrassing) until I was in my 30s–which was when I finally broke down and pursued a diagnosed. Because I didn’t have tics as a kid (at least as far as I know), I was not given the diagnosis of Tourette’s, but rather "tic disorder not otherwise specified. But my neuropsychiatrist believes I might have exhibited some subtle symptomology as a youngster that escaped notice. So when people ask me what’s up, I say “Tourette’s”.

They come and go. I can go days without a tic, and then they just come out, without warning. I’ve noticed patterns. Like, there are foods that I think bring them out more than others. Foods with tomatoes (ketchup, tomato sauce), for instance. And Doritos. I don’t know if the association is so strong that I can say these foods always trigger tics, and I’ve certainly had tics when I haven’t eaten these things. And yet, I do think there is a relationship.

They also come out when I get real tired. I avoid taking night classes or doing any socializing after a long day of work, because I’m usually so tired that I become disinhibited.

But the opposite also happens. When I become excited, whether from stress or happiness, I tic more.

I have phonic tics, but they aren’t profane or loud. They come out in mid-sentence as an easy-to-miss utterance. My motor tics are usually of the head-jerking, arm-jerking variety, but occasionally they are more complex. Like, sometimes when I’m walking I’ll slip into an odd, gimpy gait. I flap my hands sometimes, and other times I grimace.

Most people who know that I have Tourette’s have never actually seen me have complex tics, though. Almost none of have heard my phonic tics either. At most they’ve seen me jerk my head or arm, or maybe blink a lot. But I live alone, and at home is when they all come out. I’m usually on my best behavior when I’m around other people. I don’t consciously hold anything back, I don’t think. It’s just that when I’m around people, I’m performing. I’m very much aware of everything I’m doing and saying. Take away some of that awareness, and you will find me ticcing. The tics come out when I’m too busy having fun, usually.

I think the most embarrassing tic is my echopraxia. If you’re talking to me in a very animated fashion with lots of gesturing, then I will eventually start mirroring you. I know I’m doing it (usually…maybe?) but I’m helpless to stop it. But most people fortunately don’t gesture enough to trigger it in me. Only very dramatic conversationalists usually bring it out.

Overall, though, I think I have a mild case. It hasn’t held me back or made my life especially difficult. Just different.

9

I have Tourette’s. First noticed my nervous tics when I was about 6 years old and I still have them now at age 45. The exact tics have changed a bit over the years but the head jerking and eye blinking have been with me for decades.

Honestly, it hasn’t really interfered with my life or prevented me from doing anything, I didn’t have a miserable childhood or get singled out, etc. There are professional athletes, surgeons, etc. with TS.

Educate yourself and your son and respond honestly and factually when people have questions. If someone asks your son “Why do you keep doing that?” and he says “It’s Tourette’s Syndrome, I have muscle twitches that I can’t control” they tend to say something like “Oh. I was wondering.” and that’s about the end of it.

Once in a while you’ll probably encounter someone who is a jerk about it. Keep in mind that that’s on level with teasing someone who can’t walk. Their bad behavior says something about them, not your kid. Again, have him respond honestly and learn not to get mad or embarrassed if somebody is trying to tease him about TS. In my experience that shuts down such behavior pretty quickly. I had to deal a with little of that in junior high school but that was about it. I got a lot more grief for being a nerd than for having muscle tics :slight_smile:

10

Anecdotal musings of an optimistic nature . . .
I’ve had college students with TS – all males. All had noticeable tics and a few had tics and verbal outbursts (usually echolalia, grunts, and so on; none of the profanity variety).

Without exception, the other students treated them as just ordinary colleagues after they realized it was TS (which happened very quickly). My sense is that most students emerge from K-12 with a lot of tolerance for – or at least knowledge about – neuro-differences.

This doesn’t mean that high school won’t be Hell (isn’t it for everyone?), but the college experience will most likely be positive and supportive.

11

I used to work with a woman whose son has it; his consists of verbal tics, and he also has ADD (she does too, diagnosed after he was) although it has not prohibited him from living a normal life. She agreed with me that it’s probably a lot more common than most people think, and believed that one of our co-workers had it too. This woman would clear her throat every few minutes, always in the same way, and it sounded like someone was hacking up a body part. :eek: She was under the care of a pulmonologist for an unrelated issue, and had seen an allergist who couldn’t help her with the throat-clearing.

I also believe that the pastor I had at the same time I worked with these women had it too. He had a motion that he would make with his shoulders and upper body several times a minute, no matter what he was wearing.

The one person who told me he had Tourette’s did not have visible tics (I didn’t ask what it was, and he didn’t tell me) but he was on medication for severe bipolar disorder, for which he is also on lifelong disability, so it may treat that too.

12

Thanks everyone for your responses. Valgard and monstro, I appreciate your recommendations and experiences living with TS. We’ll see what happens.

13

I have Tourettes too. It was first noticed when I was being treated for ADHD as a kid. ADHD medication took my tourettes from about a 3 to a 10. My worst tick is a throat clearing tick and a very very small rapid head nod. When I was a teenager I had a couple that involved twisting my kneck and arching my back that caused me minor injuries a couple of times, those have gone away (thankfully). Everything gets worse if I am stressed or overly caffeinated or sleepy.

On the whole it isn’t so bad. I knew what was going on by the time I got into high school and figured out how to fold most of my noticeable tics into my regular body language. People just thought I was quirky. It’s gotten better as I have gotten older, but it didn’t go away. I am probably much much more aware of it than others are. The weird thing is it’s not involuntary. It’s uncontrollable, but it’s more like needing to cough than a reflexive twitch. Because of that I tend to know what’s going on and have been able to react accordingly, again unless I am intoxicated sleepy or stressed.

14

My daughter had tics for many years, which she eventually outgrew by the time she was in her mid-teens. Many meds for ADD/ADHD and depression (?) will make tics worse, so be sure to advise any prescriber of the tics, even if they are outgrown.

15

You’re welcome. Like I said, so long as your son understands what’s going on and gets used to answering questions I really don’t think he’s going to have anything to worry about, whether he’s got TS or not it’ll likely be background noise compared to normal teenage angst :smiley:

My friends have told me that they’re often unaware of my tics unless someone who doesn’t know me brings it up (“Why does that guy sound like he’s clicking his tongue and clearing his throat?” “Oh yeah, that’s Valgard, he has Tourette’s” “Oh, OK”).

16

I don’t have any personal experiences to share or advice to add, but if you would like to know a bit more about what life with Tourette’s and touretteurs is like from the outside, Oliver Sacks wrote some pieces on the topic. The ones I remember are in “The Man Who Mistook His Wife For A Hat” and “An Anthropologist On Mars”, but there may have been others. Sacks was a clinical neurologist, and technically they’re classified as case studies, but on a practical level, he was a bang-up anthropologist, and the end result is more personal essay + science lesson than anything else.

IIRC, one of the touretteurs he profiled was an accomplished surgeon. Tourettic outbursts tend to disappear into deep concentration or hyperfocus; while the surgeon was in the operating theater, there was nary a tic to be seen. Outside of the OR, everyone was used to him, and nobody batted an eye.

17

I don’t know that I can add anything that others haven’t said already but I have a close friend with Tourette’s. His symptoms probably started to become apparent in small ways in middle school and kept building through high school. He would have 3-4 little tics. It was a sniffing one, a hmmph sound and a gumph type sound, and a little twitching in his eyes and face. It wasn’t a huge deal. From what I read its supposed to get better as you get older. My friend took medication for a while but then stopped because he told me he didn’t like the way it made him feel. He also told me how there is a degree of voluntary control over it, but that if he keeps himself from engaging in tics at work, then later that same day he will have a huge marathon of tics later, its like he pays for it later.

I know some people have really severe tics and psychomotor tics that are even harmful, or verbal tics that can make one embarrassed, but it seems like those cases are the exceptions. I think my friend is either really good at controlling his tics now, is back on medication, or I push it into my subconscious cause I really don’t notice it much anymore.