Curious

[Lynn777]

I have read so many posts here and on other forums where parents say they realized their own "TS" or "habits" after their child was diagnosed. I guess I'm wondering, were the "tics" or "habits" just mild, were they not bothersome enough to get addressed or diagnosed. I just think it's interesting that many of us think of this disorder as devastating, yet it seems many people live their whole life without ever being diagnosed or knowing they have a tic disorder or "TS". I'm also starting to wonder if there is a fine line between tics and habits. lastly, does everyone with true tics find them irritating & annoying?

 

I'm just very curious about this.

 

Thoughts?

 

-Lynn

[mommyfor4]

Hi Lynn, thanks for your earlier welcome! I can't speak for myself but I will on behalf of my husband who had tics and mild ocd as a child. No one thought to even consider in his family that he couldn't control his noises etc. I find this unbelievable as my sons tics apparently are very similar to what my husband went through. To this day his mother will not admit that he had tics, or could have had food sensitivities or other causes for "his habits".Yet she has come around slowly as far as our son. So my husband is turning 40 next week and still has some tics, very hard to notice unless you know him but still there under stress or if he drinks beer(probably the gluten). He himself did not have a name for what he did until our son began REALLY ticcing, in fact he never even told me of his experiences until then. We had been married for 7 or so years then. He says he knew something was not right but no one listened, especially with the school system He was put in a special ed class although he is extremely intelligent and always thought he was just dumb. Once he realized that his son had developed tics he was devastated at first blaming himself, but soon jumped in full force supporting whatever I came across to try. He explains even now that his tics are extremely frustrating and tiring. His heart breaks when our son has a particularly bad phase, I guess you could say he is hyper aware of them. Now as I said in my post our daughter has begun recently, scary for both of us, but I have to say it is nice to be able to ask him of his experience so I can really understand how they feel in those moments. My son is also really self aware and will talk about his tics, happy to have a name for them. I am also quite sure that my father to a lesser extend has tics himself, mostly stress induced but obvious none the less. My nephew also went through phases of extreme ticcing, but his parents will not even consider "that word", and have no interest in discussing it. So as far as I can see there a definite genetic links, but my husband is shocked by how similar our son's are to what his used to be. His started to become more controlled in his teens and my adulthood as I said you'd really have to be paying attention and know what you were looking for to even guess. This gives us some hope that our kids maybe will also have a waning after their early teens. Fingers crossed! Take care Megan

Edited August 12, 2010 by mommyfor4

[Chemar]

my husband was punished & ridiculed for his tics, called "habits" and had no name for what he knew was wrong with him but everyone else seemed to feel was just lack of self control

 

yes, tics are sometimes hard to handle, but imagine how much harder it is for the person doing them when they become aware that we are being irritated or frustrated.

Plus, reacting to someone's tics can actually make them tic more

 

so I learned early on that I had to keep my reactions to the tics under control! for my son's sake.

[mommyfor4]

Just a quick note. I agree wholeheartedly with Chemar.Because of knowing through my husband how excruciating it could be to try to hold tics in at school and in public we are very proactive on our sons behalf at school and with extended family. His home is his safe spot and this is where he should be able to let down his guard. I am always impressed with how understanding his siblings and friends are and we have made sure that they can talk freely about and are allowed to ask questions (respectfully)about his tics. It gives him a sense of control too, you know?..to explain what's going on. At school we have been lucky he has had the same amazing teacher for two years now and she is so supportive. They have developed their own signal for when he needs to escape to the bathroom for particularly rough patches and explains to the other kids that foods and chemicals cause his "noises" almost like them with hiccups. Very impowering for him. could we be so lucky to get her again? Sigh, wouldn't that be nice. He is so intelligent but struggles usually from November to February, when viruses are full force here.

 

My husband was also punished, yelled at and more for his tics, so thank God he is the man he is and has chosen to respond the complete opposite way. He has shared with our ds that he too had similar tics and it gives them something to bond over:)It was like a sense of relief came over him when he realized his dad had stuff too, who would thunk?

[Lynn777]

Megan, your husband's story is interesting, but it is sad he didn't have the support from his parents. At least your son won't have to go through that & as you said he and his father have a "special" bond. It's so hard to believe parents could ignore, deny or punish the tics. I guess that's why I was wondering if most undiagnosed adults were just mild and slipped under the radar.

 

Also, Chemar, I hope you understood my comment when I asked if everyone that has true tics find them irritating or annoying. I meant that from the sufferers perspective not the parents point of view. I have said from the beginning that no one in my family or my husband's family have tics or TS, but lately I've been thinking a lot about the fact that my dad, me & my older son "are in constant motion". Like we move our legs all the time, crack our knuckles, Etc., but they aren't really involuntary and they are in no way irritating, in fact I'd say they are compforting. That's why I asked that question, I'm wondering if our inability to sit still might have been the prerequisite for my sons tics/TS. ??? :(

[FedUp]

My answer to the question of whether or not it is irritating & annoying to the person that has the tics is YES. I was not diagnosed until I was 27 yrs old and my husband read an article about the baseball player Jim Eisenreich. I knew there was something wrong with me but I grew up at a time when it wasn't "in" to see a psychiatrist or get help and my mother couldn't admit that something could be wrong with one of her children. I BEGGED for help when I got home after my freshman year of college and was sent to a hypnotist and a behaviorist, neither of which helped nor did either ever suggest the word Tourettes. Growing up I was constantly told to "stop it" and my parents thought I would make little noises or tic to get attention. When my husband told me about the baseball player, I immediately went to the library (this was 1987 and there was no internet access available). I read about TS and cried as I read my life before me. I was 9 weeks pregnant with my first child and began my journey of confirming the diagnosis.

 

The first neurologist I went to had NEVER HEARD OF TS! I was dumbfounded! How could I have expected my teachers to pick it up or know anything about it if the neurologist didn't! He was an older man so I researched and ended up at a prominent hospital where someone was supposedly well versed in it. I was sent for genetic counseling to learn about the hereditary nature of the disorder and what the odds were. After my son was born I was put on Haldol. That started many years of tweaking and trying different meds.

 

Back to the issue of whether or not the tics are annoying; I have a relatively mild case. I was a straight A student and graduated summa cum laude from a good university and my tics have ALWAYS interfered with my life because they interfere with my self esteem. Maybe that comes from my parents not knowing enough to know what was wrong or acknowledge there was something wrong, but it has affected many areas. Yes, I married and have two great kids but I am constantly aware of my tics. I've been divorced for 11 years (unrelated to the disorder) and am constantly afraid of starting the dating process and having to explain. It is the most horrible feeling to go to a movie theater (movies are my passion) and have someone next to me get up and find another seat, although I will admit that is better than those that turn around and say something nasty. It is difficult to hold back both the tears and anger.

 

Six years ago I had to have titanium plates put in my neck because I had severe herniation and the discs were crushing my spinal chord. I am convinced this is a result of my tics because I had no trauma and I know other TS patients that have had the same surgery. I absorb most of my tics in my upper body and suffer from constant muscle spasms and pain. I truly feel the battering my neck has had over the years was the cause for the damage done.

 

Have you ever tried to use the new voice activated telephone prompt systems with TS? "I'm sorry, I did not understand, please say ONE or TWO"..ugh!

 

So, yes, I am aware and irritated and annoyed by my own tics and I can only imagine how others feel. My close friends and family barely notice anymore because they are used to it and I control it more when I am around others. Fortunately, neither of my sons had learning problems which was one of the things the genetic counselor advised could happen. They both have mild ADD (but half of the population seems to have that these days) and my younger one has some mild tics. I have always been very careful not to criticize and been open to getting him help if and when he wants it. He tried meds but didn't like them and is okay dealing with the little he has. It breaks my heart when I look over and see him ticking.

 

Sorry for rambling. As my name here states, I am fedup and looking for a solution. I literally just took my first dose of Strattera today in hopes that this will help. I haven't changed my medications in years so my fingers are crossed.

[Catherine7]

I have read so many posts here and on other forums where parents say they realized their own "TS" or "habits" after their child was diagnosed. I guess I'm wondering, were the "tics" or "habits" just mild, were they not bothersome enough to get addressed or diagnosed. I just think it's interesting that many of us think of this disorder as devastating, yet it seems many people live their whole life without ever being diagnosed or knowing they have a tic disorder or "TS". I'm also starting to wonder if there is a fine line between tics and habits. lastly, does everyone with true tics find them irritating & annoying?

 

I'm just very curious about this.

 

Thoughts?

 

-Lynn

 

Hi Lynn,

Im one of those people you are talking about. My son who is 3 1/2 was recently diagnosed with mild TS. After his diagnosis I realized that I too had a childhood "habit" that was actually a tic. For a while I would tense up my neck muscles then it moved to shrugging one shoulder. I remember even telling my mom that I started doing these movements and I had a hard time stopping. She just told me that it was a habit and to try to not think about it and it would go away. I also told my aunt about it and she basically said the same thing. No one thought it was a big deal because we didnt have the internet to look up all these things like we do now. I was never embarrased about it and nobody ever said anything about it, but I wanted to stop doing it because it was annoying. I would be fine if I didnt think about it but once it got in my head I would have to do the movement. I think I was around 12 or 13 when this occured. Im not sure how long it lasted because like I said no one ever acted like it was a big deal and I honestly looked at it like it was a habit that I needed to break. My mom would also always tell me about this "habit" that she had growing up. She said she made a grunting noise for a couple of years when her parents were going through a divorce. This too turns out to be a tic. She also said that nobody mentioned it to her and it went away on its own. Up to this day if I think about my neck "habit" I will feel like I need to do it but I dont because I know how easily it can start up again. Thinking about these tics that my mom and I had make me feel a bit better about my son's diagnosis because we grew out of the tics and they never got in the way of anything, we didnt even know they were tics! I also have to wonder if I didnt spend so much time looking up tic disorder symptoms on the internet if my son would have even been diagnosed because our pediatrician told me that his tics were self soothing habits, kind of like biting your nails. He told us to ignore them and they would go away. He even laughed when I brought up TS. I was so worked up about the tics because of what I read that he sent me to a neurologist just to put my mind at ease:) Didnt really work when they told me my son had TS! The neourologist even told me that in the past most people would look at these tics and think they were quirks or habits that their children had. Now people are more aware of tics because of the media and internet so they take their children in to get diagnosed. Our neour was great by the way...she told us that 30% of children get tics and they are not a big deal. Her opinion was "so what he has tics." At the time this annoyed me because I was thinking, this isnt your kid so its easy for you to say, but looking back at it now it puts things into perspective. Yes, the tics bother me and I have days where I walk around with a pit in my stomach but I have to remind myself that it could be so much worse.

Edited August 14, 2010 by Catherine7

[Lynn777]

Thanks for the replies. I think the most important take away I learned from all of the posts is that it seems how parents respond to the tics is a major key to how the child feels about them long term...

 

Catherine7 - My son's experience was very similar to your sons. My pediatrician told us that tics are very common in young children and they usually resolve or go away over time. He also said in his 30 years of practice, he's never seen a case turn into anything serious. Interesting & a little hard for me to believe. Anyway, I too was such a basket case that he sent us to a neurologist. The neurologist diagnosed my son with a mild chronic tic disorder even though he has vocal & motor tics; she didn't feel his vocal was consistent or present long enough to diagnose TS. She also said that many kids have tics and they typically aren't a big deal. She said we didn't need to come back to her unless they increased or we felt he needed medication and that she would only prescribe if the tics interfered with his quality of life. She told us unless the tics bother him, which they don't right now, to go home and ignore them. She also told me she has many patients whose parents are the only ones who find the tics disturbing - teachers, friends, etc. sometimes don't even notice them, but the parents see & hear them all.

 

Anyway, I was irritated at first too and thought the same thing -- "easy for you to say, this isn't your child". As time goes on, I think it actually makes me feel a "little" better. I too walk around with the stomach pit, but I try every day to keep it in perspective!

 

Thanks all,

Lynn

[Catherine7]

Thanks for the replies. I think the most important take away I learned from all of the posts is that it seems how parents respond to the tics is a major key to how the child feels about them long term...

 

Catherine7 - My son's experience was very similar to your sons. My pediatrician told us that tics are very common in young children and they usually resolve or go away over time. He also said in his 30 years of practice, he's never seen a case turn into anything serious. Interesting & a little hard for me to believe. Anyway, I too was such a basket case that he sent us to a neurologist. The neurologist diagnosed my son with a mild chronic tic disorder even though he has vocal & motor tics; she didn't feel his vocal was consistent or present long enough to diagnose TS. She also said that many kids have tics and they typically aren't a big deal. She said we didn't need to come back to her unless they increased or we felt he needed medication and that she would only prescribe if the tics interfered with his quality of life. She told us unless the tics bother him, which they don't right now, to go home and ignore them. She also told me she has many patients whose parents are the only ones who find the tics disturbing - teachers, friends, etc. sometimes don't even notice them, but the parents see & hear them all.

 

Anyway, I was irritated at first too and thought the same thing -- "easy for you to say, this isn't your child". As time goes on, I think it actually makes me feel a "little" better. I too walk around with the stomach pit, but I try every day to keep it in perspective!

 

Thanks all,

Lynn

 

Hi Lynn,

I was actually quite surprised that the neurologist diagnosed my son with TS because he has only had a vocal tic (a cough) since the end of January. He had a motor tic for 2 weeks last summer and it returned in April. I think she thought I was crazy so she just said TS under her breath and tried to quickly move on:) She said the exact same thing that yours said, she would not medicate him to make me feel better. She said she didnt notice any tics and that the best medicine would be for me to accept the tics because he can sense if Im stressed, which could make tics worse.

My husband and mom are the only people who even know about the tics. My husband isnt bothered at all by them and my mom said that she would never notice them if I didnt always bring it up. I havent shared his diagnosis with anyone because his tics are so mild and nobody has ever said anything. I dont really want him to be labeled, so Im struggling with what to share/not share with people. Have you been open with your sons diagnosis with his school and friends?

[Lynn777]

Catherine, I think we have the same neurologist, husband & mother! LOL.

 

I too am surprised the neurologist diagnosed your son with TS so quickly, especially since the diagnostic criteria is 12 months for both vocal/motor tics.

 

For the most part only our immediate family knows about my sons tics. We did tell his teacher, but only because at the onset of the vocal his tic was noticeable & seemed to be causing him some anxiety. I was SO worried about him, I had to be able to get updates from the teacher throughout the day or I wouldn't have been able to cope. The anxiety was short lived & his tics are (for the moment) manageable & mild. My husband also handles them much better then I do. In fact, he, my parents & his mom only notice about 1/4 of the tics I do. One of the many joys of motherhood I guess. We have not told any of his friends or their parents. At his birthday party I knew it was the right decision - get 15 little boys together & good luck picking out the "one" who tics!

 

I agree with not wanting him to be labeled.

[Catherine7]

Catherine, I think we have the same neurologist, husband & mother! LOL.

 

I too am surprised the neurologist diagnosed your son with TS so quickly, especially since the diagnostic criteria is 12 months for both vocal/motor tics.

 

For the most part only our immediate family knows about my sons tics. We did tell his teacher, but only because at the onset of the vocal his tic was noticeable & seemed to be causing him some anxiety. I was SO worried about him, I had to be able to get updates from the teacher throughout the day or I wouldn't have been able to cope. The anxiety was short lived & his tics are (for the moment) manageable & mild. My husband also handles them much better then I do. In fact, he, my parents & his mom only notice about 1/4 of the tics I do. One of the many joys of motherhood I guess. We have not told any of his friends or their parents. At his birthday party I knew it was the right decision - get 15 little boys together & good luck picking out the "one" who tics!

 

I agree with not wanting him to be labeled.

 

Its good to know that there is someone else out there that is going through the same thing. I sometimes feel guilty getting so upset over the smallest tics. My husband actually gets upset with me for thinking this is such a big deal.

Are you planning on going back to the neurologist after a year passes to get a TS diagnosis or did she say that he will still be considered to have chronic tics if his vocals dont happen too often? I only wonder because my neurologist never asked me how often my son has tics or anything like that. She just gave me a lesson on tics and said since he has both vocal and motor tics he has tourettes...

[Lynn777]

I know, I feel guilty too. In fact, I was doing really well the past week or so and then last night I noticed a few extra tics and I allowed the sadness to consume me. You are definitely not alone and my husband gets upset with me sometimes too. What he doesn't understand is I'd give my right arm to be able to handle it the way he does, I just don't know how. I sure don't want to be upset all the time; I want to enjoy my kids and my life.

 

As for the diagnosis, I doubt I will go back to the neurologist unless his tics really increase to the point we'd consider medication. As much as I am saddened by the tics, I would never medicate him unless he asked for it or felt completely overwhelmed by them. Outside of that, I see no reason to get him formally diagnosed and neither did the neurologist. From everything I've read there's probably a pretty fine line between transient, chronic & Tourette’s tics anyway.

 

Did your neurologist suggest you have follow-up visits or no? Is your son bothered by his tics at all?

 

I sent you a PM with my email address if you ever want to email me directly.

 

~Lynn