My own thoughts on tics

[ilovedogs]

I don't know about some of you, but many times I feel like just when I find an answer or a 'lead' to what's going on to cause the tics, etc. I end up at a dead end or something changes to make me rethink my strategy. For the longest time I would feel sorry for us b/c of the neurological issues we were dealing with and wonder why can't my kid be like all the normal ones out there? I swear I didn't see any kids with tics or TS. Our naturopath keeps speaking to me about the tics implying that they are more OCD tics than they are TS. To me, it doesn't really matter what it is, call it what you want....I just want to find the trigger, try my best to control it, and hopefully my son will progress through puberty smoothly. Adolescence is hard enough, tics I'm sure make it challenging to some degree.

 

Anyway, while I've been sitting here feeling sorry for myself(yes, myself...not my child...he's fine) I finally saw 2 boys with tics this past week while out and about shopping. One boy at the mall had motor tics and a loud vocal(honestly, I've never witnessed a true vocal like that myself) and the other boy had a shoulder shrug and then he'd look up at the ceiling and roll his eyes upward(this was at Whole Foods). So, what I've come to realize is that 1. I'm not alone(I know, I know...you're all on here, but you know what I mean) and 2. I may never find out what really triggers his tics and I need to be OK with that. There's probably a 3 and a 4, but I'm too tired to remember them, LOL!

 

I guess what I'm getting at here is that I need to just accept the fact that I'm on a roller coaster ride or a never ending merry go round, and get over it. Many times I feel like I've failed him b/c the magnesium never seemed to help or b/c the 5-HTP sent him into major OCD waxing that was awful, etc. I know we all wish we had a magic pill that we could give our kids but it just doesn't work like that, does it? So, I guess I just want to encourage you all to keep searching for the right 'formula/s' for your child and to not give up. I know I need to believe that all my work, research, diet restrictions, doctor appointments, etc won't be in vain! I hope you feel the same way, too!

[faith]

hi bonnie<

I wish I had something upbeat to say, but I guess I am in the roller coaster car right behind you. why do you think I'm up at 5:30 in the morning computer surfing? don't want to be a downer, but just wanted to say I hear ya. I think most here will fare pretty okay in the long run. but there will be times when certain tics will be a little more obvious, and right now I think that's what we got going on, we have the head shake back, which hasn't been around in two years. so with this, I feel sorry for my son too, not just myself, because even tho he handles it all pretty well, there are times when I know he is frustrated that he has this.

 

I do feel the need to point out, however, that we have not been adhering to the dietary restrictions that I know we should, and our supplements are at a minimum. I try to be vigilant about the obvious stuff, but I must confess we are no where near 100% on that. I have done it in the past, with some success, but my problem is that I have a very skinny boy and I just have not been able to keep his diet clean, mostly due to non-compliance. At age 10, its just too difficult. I had been persuing NAET since February just for these reasons, but so far, it does not seem to have had any positive effect, I am sorry to report. Even tho, I would still encourage anyone to try it, for you never know what sensitivites someone might have that might make a difference once eliminated. that's what I was hoping for. we still have more to do, but so far, nothing interesting. I do the best i can, and pray for the best....we are all here for our kids and to help each other.

 

Blessings

Faith

[ilovedogs]

Faith, this is why I posted this thread. I wanted those who are frustrated to know that they are not alone. You know, I have tried all different diet modifications with him over the past 2 years and nothing, good or bad has made an impact on his tics. I have always stayed away from MSG, though, even before the tics and stuff started. I have been totally lax about his diet these past few months and I've seen NO waxing or increase in tics. But, just the past few days he's been doing a new tic where he blows air out his nose, kinda like a backwards sniff. He also just lost a tooth the day it started, so again I'm back to thinking that tooth stuff definitely is one of our triggers but that doesn't explain why he tics everyday anyway!

We did the NEAT, too, last summer. I think it helped b/c his allergies this spring were far less severe than the past 5 years, but it did nothing for the tics. I didn't have to give him allergy meds to get him sleeping through the night, etc. And, I know that the intensity of his tics increases when he's being reprimanded or when he's taking a test, or when he's sick. So, those are the things that I KNOW. Everything else is a mystery!

 

Bonnie

[Betty04]

Just wanted to say I hear you and thanks for your post... it helps to be reminded you're not alone!

[Chemar]

(((((((((((Bonnie)))))))))))

we sure all understand.

 

years ago, when I first started posting on forums to find help for my son and support for self, a lady who is now a dear friend had a post for those with a TS diagnosis.

 

I have posted it here before but I am going to quote it again below as I think it is so relevant for those who do have Tourette Syndrome

 

I learned long ago in this journey with my TS son that although yes, he has triggers, and yes, there is much we can do to help....yet he has TS and so he will tic....sometimes more, sometimes less.....but he tics. Period. It is *NOTHING* like it was before we started diet modifications/supps/acupuncture etc but he still tics.

 

here is Lara's message:

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.

[san70]

My own quest for helping my ds has been relatively short compared to so many of you from this forum. We have been dealing with this for over 2 years. I am so thankful for the support of this forum and for all of the information. I get so frustrated, too. Just when I think that maybe I have found a trigger something changes. Sometimes it seems that foods or other things may be a trigger and sometimes not. I keep trying to tell myself that we are healthier because of all this. It is very frustrating when we are in the minority for our healthy food choices and for having tics. I feel so bad for my ds. I wish that I could just let it go. I am constantly worried when he is with friends if he is going to eat a forbidden food or spend his playdates glued to the tv playing Wii (again, sometimes I think video games trigger, sometimes not.). I try not to be so crazy with the food because I want him to understand we are doing this for healthy reasons first and foremost. I don't know. I am the one in the family who is crazy with all of this! I read a post some time ago by Cheri that I often hear echoing inside of my head when he is having a particularly tough time...she said something along the lines that your child will tic...period. I need to stop thinking that it will go away as if it were a cold. So, I try to tell myself that it will continue to be a roller coaster of waxes and wanes but he will always tic since he always had. That doesn't stop me from hoping that one day, he'll stop.

 

thanks!

[CSP]

Hey!!! It just dawned on me, has anyone told the roller coaster opperator, "I WANT TO GET OFF!!!!!"

 

 

Bonnie, I wanted to share what I think about the tics being more OCD. I really sat down with my son and asked all the OCD questions that Dr. Sims sent to us. I thought the questions were good OCD questions, but my son said he did not feel like how those question were put to him. He even said these are strange questions, and looked at me funny when I asked them. The only question he could relate to was the question about being worried he would get gasoline on his hands form the lawn mower. I really don't see that as an OCD I would not want to get gas on me either. So the only OCD I could think takes place for my son is some volunteer tics, but his thought process is not one of OCD.

 

CP

[ilovedogs]

My own quest for helping my ds has been relatively short compared to so many of you from this forum. We have been dealing with this for over 2 years. I am so thankful for the support of this forum and for all of the information. I get so frustrated, too. Just when I think that maybe I have found a trigger something changes. Sometimes it seems that foods or other things may be a trigger and sometimes not. I keep trying to tell myself that we are healthier because of all this. It is very frustrating when we are in the minority for our healthy food choices and for having tics. I feel so bad for my ds. I wish that I could just let it go. I am constantly worried when he is with friends if he is going to eat a forbidden food or spend his playdates glued to the tv playing Wii (again, sometimes I think video games trigger, sometimes not.). I try not to be so crazy with the food because I want him to understand we are doing this for healthy reasons first and foremost. I don't know. I am the one in the family who is crazy with all of this! I read a post some time ago by Cheri that I often hear echoing inside of my head when he is having a particularly tough time...she said something along the lines that your child will tic...period. I need to stop thinking that it will go away as if it were a cold. So, I try to tell myself that it will continue to be a roller coaster of waxes and wanes but he will always tic since he always had. That doesn't stop me from hoping that one day, he'll stop.

 

thanks!

Yep, I don't stop hoping either! We still don't have a diagnosis either. You know, did you all know that Dan Ackroyd was diagnosed with Tourettes when he was a child. He said that the tics stopped when he was around 14 but that his Aspie like behavior and obsessions are still with him today. I have another friend in CO who's son had tics from age 8-14 and she said they just stopped when he hit a growth spurt. These stories are the ones that give me hope, but I also have to remind myself that they may never go away! My mom plays accordion with a man who has pretty major tics as an adult. He doesn't tic while he's playing but when he's waiting for his section to play in the orchestra, he will tic like crazy. He's a very successful engineer and has 5 grandchildren. So, it's people like this that I try to think of when I get discouraged b/c tics truly aren't life threatening. They're an inconvenience and they may be irritating and annoying but they aren't the worst thing that can happen, as Cheri pointed out!

 

Thank you, Cheri, for your post from Lara. It was a nice reminder!

 

B