Anyone have experience with Tourette syndrome?

[maize]

One of my children may be facing this diagnosis. Any BTDT experiences to share?

[Night Elf]

My ds's psychiatrist gave him a diagnosis of Motor Tic Disorder and suggested he see a neurologist for a formal Tourette's diagnosis. He didn't want to do that but wouldn't give me a good explanation. So the psych put him on Clonidine and it has greatly reduced his tics.

[Scarlett]

One of my children may be facing this diagnosis. Any BTDT experiences to share?

 

 

The adult son of dear friend's of ours has a severe case.  It was thought he would grow out of it once he got through puberty.  Then it turns out he has a rare condition where he didn't go into puberty.  So they forced it with medication...but his Tourettes only worsened. 

 

How old is your child?

[klmama]

No Tourette's, but I do know several people with motor tic disorders.  Increasing magnesium intake helps a couple of them, but the other needs meds. 

[TheReader]

 My 16 yr old was dx'ed around age 9 or 10 I think (I forget his exact age...maybe a bit younger). It was mild, then kind of bad, then mostly stress induced, and now almost non-existent.

 

He has never done meds, though the neurologist let us know they were available if he wanted. Our neurologist really emphasized to ds and to us that the meds can/should only be used if the child himself is bothered by the tics; we had a great neuro who really used child-positive language about all of it, so ds was always left feeling confident, rather than self conscious, about the whole thing and empowered with language to use to explain it to others that helped with that a lot. 

 

His tics were mostly vocal, with some motor but mostly face/subtle, not large gestures. I'm happy to go into more detail in PM if you need. 

[EKS]

A good friend of my son's has a tic disorder, but I don't think it's actually Tourette's.  I've known him since he was 5, and his tics seemed to peak at age 9-10-11.  They are usually a mix of vocal and motor.  He is now a teen, and they seem to be much less obvious.  

 

I also have a friend who I've known for maybe 10-12 years who has a Tourette's diagnosis.  When you first meet her, she tells you right upfront that she has Tourette's and what her tics are.  That seems to work really well to reduce or eliminate any awkwardness people might feel because they don't know how to react.  Her tics are usually motor tics that might be very distracting in conversation, but aren't because everyone knows what's going on.  

 

I also had a guy working for me many years ago who had a very obvious motor tic, but he never mentioned anything about it to anyone, so it was difficult to know how to respond (Should you maintain your gaze or look away?  That sort of thing).  Such a contrast between that and my friend who is so open about it.

 

So those are my experiences with tic disorders.  Well, actually, no--my son also has a diagnosis for a tic disorder (because he had some tics when taking ADHD meds), but it was very subtle, and it doesn't seem to be an issue anymore (he's almost 21).

 

Anyway, I hope that something in these ramblings is useful.

 

 

[maize]

The tics we are currently dealing with are not subtle--major facial grimaces + head movements mostly.

 

The child is 11.

[Scarlett]

The tics we are currently dealing with are not subtle--major facial grimaces + head movements mostly.

 

The child is 11.

 

 

So no puberty yet?  Were you told he/she might grow out of it? 

 

My friend's child is a candidate for the brain surgery.  He would be the 11th in the world (or nation--can't remember now) to have the surgery.  Right now he is almost 100% homebound. 

[wonderchica]

I'm sure you will do this and it goes without saying, but I'd be honest with the child about it. I had a friend in college whose parents gave him "allergy medicine" throughout childhood, only to reveal when he graduated he had Tourettes. Needless to say he was very upset. He tried to go without meds for awhile; somewhat unsuccesfylly.

[sassenach]

My cousin was diagnosed when he was in the 8-10 range. His tics were dramatic head and facial movements. I think there might have also been a throat clearing/grunting also.

 

They put him on medication. I don't remember what it was, but I know it came in a patch form. I think the tics slowly subsided after that and never came back. If I recall correctly, he wasn't on the med for that long. The whole cycle was less than 2 years from beginning to end. AFAIK he hasn't had any further issues.

 

I remember they were much worse when he was doing something intense like playing video games.

 

That side of my family seems to have all sorts of funky brain issues that subside in adulthood. 

[Sarah CB]

There was a kid who was diagnosed at age 8. He had motor and vocal tics. At the time of diagnosis, one tic involved clearing his throat while his fist was in front of his mouth. Another involved a big arm swing with kind of a head dip. The tics changed over the years - blinking, touching nose, chewing fingers (until infection), shoulder shrug, kind of a humming thing, etc. By the time he was 13, they had largely disappeared except in time of stress - even times where he didn't feel stressed but there was stress - like going on a tropical vacation with family, there were tics leading up to the trip and during the trip - to the point where his dad wondered how he was able to watch the in flight movie with such rapid blinking. 

 

Anyway, that kid is now an older teen and I think everything is gone. There is a touching nose thing that may still be handing on, but it's normal enough looking. 

[Selkie]

No Tourette's diagnosis, but my dh and sons tic, as well as many of the males on dh's side of the family. My boys ticced the most between the ages of 5 and 10, when they had both motor tics and vocal tics (mainly sniffing and throat clearing). Now that they are teens, they rarely tic anymore and it's usually when they are stressed. My husband is the same.

 

 

[6packofun]

My almost 11yo most likely has Tourettes or some other tic disorder.  His are both vocal and motor and occasionally change.  He sort of has mild phases with some more intense times in between.  His tics definitely can have an OCD element to them so that sometimes I wonder which is driving his behaviors more, if that makes sense.  We have yet to use medication but we are gearing up for a visit to the pediatrician to work our way towards a diagnosis and to see if medication is worth it.  When it's really bad, which has only been a few times since his tics began around age 6, he will have real difficulty sleeping because he's obsessively consumed by the tics and he gets VERY upset--"Why am I made this way??! Why can't I control it?!! I HATE MY LIFE."--and lots of tears.  :(  He's very open about having tics and positive most of the time.  We're very matter of fact about this just being part of who he is and it may not be forever.  He isn't afraid to make friends because of it, but he does have social anxiety that makes him want to stay home most of the time so we're trying to get him out into the world more.  lol

[whitestavern]

 My 16 yr old was dx'ed around age 9 or 10 I think (I forget his exact age...maybe a bit younger). It was mild, then kind of bad, then mostly stress induced, and now almost non-existent.

 

He has never done meds, though the neurologist let us know they were available if he wanted. Our neurologist really emphasized to ds and to us that the meds can/should only be used if the child himself is bothered by the tics; we had a great neuro who really used child-positive language about all of it, so ds was always left feeling confident, rather than self conscious, about the whole thing and empowered with language to use to explain it to others that helped with that a lot. 

 

His tics were mostly vocal, with some motor but mostly face/subtle, not large gestures. I'm happy to go into more detail in PM if you need. 

 

This has been kind of my situation, a 14 yo ds diagnosed around 8 maybe? Nothing formal, just his pedi who said if there's a verbal aspect (he had many different tics) for at least a year, I think, that would be considered Tourettes. We treated with magnesium. We also made sure he had lots of sleep. And the less time he was in front of a screen, the better. He also has now mostly outgrown the tics. Sometimes when he is very tired or on electronics too much they will come back. We were told that they can sometimes intensify in puberty but that has not been our experience.

 

ETA: ds had all sorts of different tics, some more noticeable than others but all were noticeable, mostly upper body and facial, some vocal.

Edited May 25, 2017 by whitestavern

[whitestavern]

I'm sure you will do this and it goes without saying, but I'd be honest with the child about it. I had a friend in college whose parents gave him "allergy medicine" throughout childhood, only to reveal when he graduated he had Tourettes. Needless to say he was very upset. He tried to go without meds for awhile; somewhat unsuccesfylly.

 

We did not tell our son that we were told it was Tourettes. First off, the only thing we knew about Tourette's was that people screamed out obscenities (what you learn from TV etc) We did tell him (and others, family etc) that he had tics and that they were very common (because they are, especially in young boys).

[dsmith]

My son has tics that are very well controlled with medication. They are mostly vocal, usually in the form of throat clearing which at it's worst was every two seconds and drove him nuts. He occasionally has a kind of skip to his walk with a head tilt and in moments of great excitement he can make a high squeaky noise. He's been medicated for years now, since his tics first started, but the meds aren't only for tics. We are pretty sure his tics would be very, very bad if he was to go off his medications. (Abilify is what is controlling his tics for the last few years, to the point where they are mostly gone unless very excited or anxious. He takes an extremely low dose - 2mg every other day, again - not just for tics. That is more of a side benefit.) He's never been dx'd with Tourette's, just tic disorder. If he didn't need to take Abilify for other reasons he would opt to keep taking it just for tics. He was miserable when they were at their worst. On a side note, some things we have noticed that make his tics worse are caffeine if he drinks over 2 cups of coffee (he's 18 now and loves coffee!) Coke (not the caffeine, it is something about Coke because it doesn't happen with Pepsi or other caffeinated sodas), red dye and anticipation for exciting (for him) events that are coming up, like video game releases. You may want to check out the Feingold diet if you haven't already. My brother also had a major problem with red dye.