How do you find balance?

[chansmith11]

How do you find balance with looking for triggers and making sure your child doesn't think her tics are bad? We are just starting this process and my DS is very much conscious of her tics and she doesn't like that she has them. We are trying to find her triggers and will be seeing various dr's. I want to make sure that we navigate this properly and don't make her feel anymore self-conscious than she already is. I don't want her to look at them badly or feel badly because she has them.

[guy123]

To find triggers, introduce/remove things into your diet one at a time. For example, if you're thinking of trying some new supplements, try them one at a time. If you start like 3 new things and you notice a decrease in tics, you won't know which one caused it. Same thing for removing stuff. If you want to try removing MSG, gluten, and dairy, for example, do them one at a time, and if you notice a reduction in tics you'll know which one it was from. If you do them all at once and notice a reduction, you won't know which was responsible.

Edited November 1, 2011 by guy123

[Chemar]

My son was always very involved so we did not have a problem. he knew he had TS and wanted to find ways to reduce his symptoms, but also knew we fully accepted him as he was and were not trying to "fix" him. I think that made things a lot easier.

We also left some things alone eg he knew he had more tics from certain video games with a lot of screen flash but he also loved playing them. So we allowed him to and introduced daylight lamps to lessen the effect of the screen flash and flicker, as well as LCD screens etc.

The tradeoff for the relaxation and de-stressing his games brought was far worth the small tic increase, helped by minimizing the known trigger of the flash/flicker

 

We made sure he realized that any changes in diet or environment etc were never to be seen as him being "punished" for his tics

 

I am thankful I read something by a friend of mine, Lara, on another forum, right at the outset of our TS journey as it really helped me get that balance. Here it is:

 

 

Just want to share something with you all, please.

Sometimes I find it hard to express myself on some of the threads. I hear you but I don't always know how to get across how I feel.

 

People with TS tic. It's OK!

 

Sometimes some tics can be self-injurious or problematic, that cannot be denied. Some tics interfere with all manner of things, like reading, writing, walking, breathing, talking etc. etc. etc., (yes, I know) but the majority of the time they are JUST tics.

 

I don't even notice people's tics much anymore. I know this might sound most peculiar to some people, but I also find tics of people I know very well, quite endearing.

 

People tic when they are relaxed. People tic when they are stressed. People tic when they're driving. People need to feel they can tic freely and not feel as if they're being watched, or being studied. It feels good to let it out. People tic 'cause they gotta tic!!!

 

My son sure has bothersome ones but they are only bothersome to ME when they are dangerous or are causing him grief for some reason or another. I think the most grief he faces is from people who don't seem to just see him as _him_ anymore. They see his constant ticcing and it's as if they negate the existance of his 'self'.

 

Every single day I am reminded how comfortable home is for my children. That's because school, for example, causes so much build up of unreleased energy. Kids and staff at school, despite education, still don't see past the tics. They don't see past how much my children have changed tic-wise since they were in Year 1. They don't look!!!

 

I'm not denying that tics can be of concern. I'm not denying that tics can be a right pain. I'm not denying that tics can really affect some people's quality of life. I'm not living in some unrealistic place where I deny the concerns and the pain these _can_ and do present. Believe me, please, I know. However, I think we need to understand in our own minds, that there are many more things that can cause more distress to a person than tics.

 

We need to start with ourselves. Start at the source. Change the way people view TS from here. I truly empathize with you all who are struggling with this in your young children. I have struggled, still do struggle, and will struggle in the future with some issues. I think the greatest thing we can all do though, is to look BEYOND the tics. Hey, maybe the rest of the world might get the same idea!

 

Your children's tics are just part of the tapestry of who they are and who they will become... just a tiny part.

[mythree]

When my DD was little like yours we just told her we were looking into 'allergies'. That maybe she was allergic to something. She had so many friends with allergies that had to say 'no' to cake, or couldn't eat gluten etc etc for various reasons that when we gave her a reason for her tics (even though we didn't really know if it was caused by allergies) she seemed much calmer. She used to have itchy skin at the time too - so we would often say we are eliminating this food for your itchy skin or something like that - so it wasn't always about the tics. We just acted like they weren't a big deal (even though we were terrified inside) and handled it like we would any other condition we'd go to the doctors for (in front of her). At the majority of appts she would sit in the waiting room while we discussed everything with the doctors or nutritionists etc. So it wasn't in front of her.

Good Luck!