Tourette peak around puberty

[lovemykids]

Hi Everyone:

 

Well..... my daughter is 7 years old. She started ticcing (eye blinking) when she was 2 1/2. Her main triggers are strobe lights, flash lights and t.v. She would go over a year without ticcing if not exposed to the light triggers. At age 6, after an intense light show from a Disney Ice Show, her tics started up immediately (after no tics for more than 14 months). It was bad tics that moved down her body: facial, neck, fingers and sometimes her wiggly toes. No big movements (arms, lets). The tics sometimes were just 1 tic. Sometimes they were multiple tics, multiple patterns, sequential and non-sequential. No real patterns. It was bad for about 2-3 months. Then it calmed down. As she has aged, when her tics are triggered (camera flash, disco lights (chuck e cheese), etc) , it is mainly facial tics. She has tics most days than no days. These tics (age 7) are not as bad as the tics triggered by the strobe lights at the ice show (age 6).

 

After seeing our daughter's new tics at age 6 (before was only eye blinking tics), our pediatric neurologist said she most likely will become tourettes. She said she isn't worried about her too much since she is a female. Their tics are usually not that frequent or severe as boys (from her experience). She told me, with tourettes, tics usually peaks around puberty. Puberty meaning the time girls start to menstrate. She said, "usually 1 -2 years before puberty and 1 -2 years after puberty."

 

My daughter has facial tics. I'm just so afraid of how bad it will get when the tics peaks. I'm actually hoping that since she started ticcing so young, she will finish ticcing early. Not so says our neurologist. There is no patterns in terms of when one starts and one ends. Also, at adulthood, most of her patients have less tics that only they themselves know they are still ticcing (good news). Most of her patients still have the tics throughout the adulthood - don't outgrow. Just got better. A very small percentage stays the same (as when they were children) or have gotton worst tics. Hardly any of her patients tics disappeared forever.

 

Can anyone share their tale of how their childs tics have progressed throughout their lives? I am so sad about this. I keep hoping the neurologist is wrong. However, so far, she has been pretty acurate.

 

Thanks for posting.

[Chemar]

Hi and welcome:)

 

yes, in general the pubertal years are the worst for those with TS

 

my son is now 161/2 and his tics are barely noticeable. However, in addition to him being over the worst of the hormonal years I also attribute the decrease in his tics to the natural treatments that we have followed since he was 11. The one year that he was on medications (age 10-11) was the very worst!!

 

if you spend some time reading here and on the main Latitudes website, you will find much reason to be hopeful:)

[birdman]

Hi, I am an 18 year old male and I was diagnosed with Tourette Syndrome at age 6. First off I would like to say that although my condition was not triggered from flashing lights I was very similar to your daughter at her age. And I am sure that you will be happy to hear that I am no longer on any medication and my touretts are very mild today and are extremely manageable. I had been on a few different medications for my touretts over the years but decided to go off of them for college and am doing totally fine. I do not know if your considering medication but when i was initially diagnosed they put me on medication that was pretty intense and did a good job of taking ticks away but however it did made me drowsy and I had to have regular ekg's to check up on my health. But I found the best medicine I ever took was called Guanficene sp? and that did not have any side affects. It did not completely take away my ticks but it brought them down to a much more manageable level.

 

I can say that my ticks got much worse during puberty. My ticks are usually absent when I am concentrating on something such as driving a car or running a race. But they spike whenever I get emotional (sad, happy, angry etc) I would say the worst year for me was probably my sophmore year of high school. I am a pretty serious track athlete and was even having trouble doing workouts because I would do these ab flexing ticks that were just plain annoying. So that year I went off of the guanficene and started more powerfull medication (I can't remember the name sorry) but I was only on that for a year before going back to guanficene. Most of my friends at school didn't know I had touretts and I became pretty good at just shrugging off comments. In all of school they never we bad enough that it became a serious. But by my senior year I had pretty much grown out of the bad stages and gotten to a point where they were better than they were when I was a kid. I think what I am trying to say is that even though its a shocking thing to learn that your child has a syndrome that \she will have for the rest of their lives if her case is anything like mine she will be totally fine.

 

Matt

[patty]

thx for sharing your story birdman!

 

Pat

[guy123]

Guanfacine is Tenex, for anyone reading.

 

birdman, did guanfacine make you sleepy? I'm on clonidine (catapres) which is the same class of medication, but it makes me sleepy. Also, did you notice any change in libido while on guanfacine?

 

Thanks.

[birdman]

Guanfacine is Tenex, for anyone reading.

 

birdman, did guanfacine make you sleepy? I'm on clonidine (catapres) which is the same class of medication, but it makes me sleepy. Also, did you notice any change in libido while on guanfacine?

 

Thanks.

 

Yeah Clonidine was the stronger one I started out on when I was younger. And it did make me sleepy. I don't think there was any difference in libido however I am a teenager...so I don't know if i would notice.

[mommyof2]

Matt

Thank you for your encouraging words... My son is 10, will be 11 in Feb. and started tics when he was also about 6 but we considered them habits... one thing happening at a time--ex eye blinking, hand smelling, and when one would end the other would begin... about 2-3 grade, more things started to appear with body movements and from 4th grade to now more intense... It is encouraging to hear that maybe this will be HIS worse year... crossing fingers for them to become milder. We have never started medications yet, just b-6, grapeseed and Kids Calm... Again thanks for your words

mary

 

 

Hi, I am an 18 year old male and I was diagnosed with Tourette Syndrome at age 6. First off I would like to say that although my condition was not triggered from flashing lights I was very similar to your daughter at her age. And I am sure that you will be happy to hear that I am no longer on any medication and my touretts are very mild today and are extremely manageable. I had been on a few different medications for my touretts over the years but decided to go off of them for college and am doing totally fine. I do not know if your considering medication but when i was initially diagnosed they put me on medication that was pretty intense and did a good job of taking ticks away but however it did made me drowsy and I had to have regular ekg's to check up on my health. But I found the best medicine I ever took was called Guanficene sp? and that did not have any side affects. It did not completely take away my ticks but it brought them down to a much more manageable level.

 

I can say that my ticks got much worse during puberty. My ticks are usually absent when I am concentrating on something such as driving a car or running a race. But they spike whenever I get emotional (sad, happy, angry etc) I would say the worst year for me was probably my sophmore year of high school. I am a pretty serious track athlete and was even having trouble doing workouts because I would do these ab flexing ticks that were just plain annoying. So that year I went off of the guanficene and started more powerfull medication (I can't remember the name sorry) but I was only on that for a year before going back to guanficene. Most of my friends at school didn't know I had touretts and I became pretty good at just shrugging off comments. In all of school they never we bad enough that it became a serious. But by my senior year I had pretty much grown out of the bad stages and gotten to a point where they were better than they were when I was a kid. I think what I am trying to say is that even though its a shocking thing to learn that your child has a syndrome that \she will have for the rest of their lives if her case is anything like mine she will be totally fine.

 

Matt

[faith]

Hiya,

just to put my little line of reasoning in here, - is this perhaps making sense about tics peaking because obviously the toxins (whatever it may be, food intolerances, vaccines, allergies, etc.) will obviously progress into doing more damage if not treated or controlled/managed, and then it is also said that allergies and intolerances are sort of grown out by some kids as they get older? Also, maybe the immune system is done with fighting with the hormonal years and the maturing of the nervous system and so calms a little?

 

I am just putting this down, because I had it in my head, and it does go with my gut feeling that the toxins, allergins, sensitivities, etc, are a big factor in all this. Even tho I am still struggling with the right formula for my son (he is 9 1/2 now), I have never let go of this being the root of it all. I am not so successful because I have not been able to get his diet absolute because of non-compliance and just plain impossibility due to his being very thin. I also think those of us who can't get the diet part right may be dealing with way more than one or two intolerances.

 

I'm going off here, but I just wanted to put my line of thought down for what its worth.

 

 

Faith