Influencing the Tics?

I posted on another (now-abandoned) forum back in '08 when we first started to realize what had been going on with my daughter since she was a toddler was Tourette's. You can see the thread here: http://tourettesyndromenowwhat.yuku.com ... eply-45437

Anyway, she is 12 and a half now and clearly does fit the diagnostic criteria for Tourette's. Nothing else has been identified. Her extreme anxiety stuff has gotten a lot better and she's an overall happy child. The very strange behavior and complete social shutting down she used to exhibit is pretty much gone.

However, she still has lots of tics and is extremely small for her age. Her tics seem to be influenced by stress levels. We can't find other correlations. Recently she started getting some motor tics that she had briefly last year. Her pinky curls painfully, and her shoulder has to roll, which also causes her pain. She also has new grimaces.

Here is a list of her other tics that have come and gone regularly (I'm sure I'm missing plenty of them):
gulping air
squeaking noises of various kinds
throat clearing
arm flapping
snapping fingers
whistling (little whistles even come out in the middle of words)
picking herself
scratching herself
throat clearing
sniffing
blinking
grimaces
throwing head back with big open smile
sticking tongue out with mouth wide open
repeating words she has said
tapping

Over the past year we have completely changed our diet and thought that might help with her ongoing tics and her slow growth. We changed our diet because of health problems her brother has/had. He was hospitalized and had an emergency surgery on his hip for a rheumatoid problem that we later found out was caused by an autoimmune reaction to gluten. By genetics and symptoms, he's been diagnosed as celiac disease, though we were gluten free before being able to get a test so it's not completely official. Reintroducing gluten for testing resulted in such severe symptoms that proper testing was out of the question. We did put our daughter back on gluten and have her tested and she was negative.

When we figured out that just "gluten-free" wasn't enough to keep from making our son sick, we realized we had to go to carefully sourced foods, and a totally gluten-free house. Within three months of eliminating gluten his extreme dyslexia went away and he jumped from a pre-reading level (at age 10) to 5th grade or better reading level. Then we discovered his "seasonal allergies" were actually masking a corn allergy which was the basis of their severity. Additionally, his stomach aches, digestive problems, and anxiety went away. His mild ADHD issues also went away.

Our whole family decided to try the GAPS diet after more research (Gut and Psychology Syndrome Diet) since I have a mood disorder, our daughter has mood issues and some ADD issues in addition to the Tourette's, and we wanted the simplicity of all eating the same way. We started the diet last February. It has made a huge difference in our whole family's health on many levels.

I had high hopes that this diet might help her with her Tourette's as well, but so far it doesn't seem to have really made a difference. The only possible correlation I've seen is that when we first started gluten-free she got the pinky curl and the shoulder tic for a little while, then it went away. Now those tics are back. She also recently has had the sensation of spiders crawling on her at night. We were worried that it was psychological or related to her new tics in some way but we got her a new mattress cover and that seems to have resolved it. Maybe dust mites were a problem. She still is picking and scratching at herself.

Has anyone figured out a way to influence which tics express themselves? Has anyone noticed diet making a difference? I'd be happy to hear any input people might have for me! Thanks!

Hey,

To what extent have you sought professional help for this? You make it sound as if she is unofficially diagnosed (i.e. you have diagnosed her yourself). That is fine if you are sure about it. i'm sure that the symptoms are quite evident. Unfortunately, I am not an expert on Tourette's at all, and neither are the others here. I am replying because this particular part of the website is not frequented by many and I did not want you to feel that your post was being ignored.

I think that the changes in diet were having more a 'placebo' effect on her than anything else. What I mean is, she was told that the diet-change would be good for her (right?). This made her feel more positive and, perhaps, distracted her from her tics (and that made it seem as if the diet change had initially worked). Ultimately, it did work, but not in the way that you had thought it would. It was only an indirect, short term benefit.

To be honest, I have not heard of any methods for improving Tourette's ... I do know that the symptoms typically appear in childhood, as they have in your daughter, but that they then subside with time. Perhaps this is because the sufferer gradually learns of ways to control the impending tic that permits him/her to then prevent it from occuring.

I think that getting professional advice is advisable, as the longer I stay replying here, the longer I am going to provide what just amounts to speculation...

Take care
Kevin

Thanks Chucky,
Is there a better place to post about this?

I guess I was a bit unclear - she was officially diagnosed in 2008, by her family doctor, followed up with a pediatric neurologist. Looking back we saw that she showed symptoms (actually severe tics) as far back as at least 2001. I didn't think it was Tourette's because the tics were everchanging and not swear words! No one thought to correct me on that until I started researching! We thought she was being naughty and disruptive

Also, the diet doesn't seem to be helping her tics. We had hopes that it would, but it didn't. I was mostly just trying to give people the whole picture. It has made a difference in her moods and appetite, though she is still extremely small for her age. When we changed her diet she did get worse tics at first, but then they returned to normal. Now she has some of those worse tics back. Interestingly, it is the same time of year that she got them before, so maybe there is a correlation there - to the seasons?

We have noticed that stress makes things worse. A few months ago we changed the parenting time so that she has fewer transitions and stays longer with us and that helped her a lot. Things have been a bit more stressful in the past couple weeks with some family conflicts that came up, so maybe that is what intensified things.

I'm mostly wondering if anyone has succeeded with being able to make the tics switch to something else sooner than later. The shoulder rolling and pinky curling make me so sad - they just go and go and I know it is hurting her. Snapping fingers or making an annoying sound wouldn't be nearly as bad. Since they change all the time, it would be nice to be able to influence that.

I have had the same tics as your daughter in the past as far as the shoulder roll and the flaring of the pinky. They can be painful if they are frequently done. I usually took advil if I knew it was going to be a stressful day and might be running into a 'bad tic day'. Anyways the two methods I used to try to limit the amount of painful tics I have is #1: Trying to control my anxiety level. This is much easier said than done, but closing your eyes and taking deep breaths frequently throughout the day seemed to help overall. Another thing I tried was when I felt a painful tic was about to come out, I would try to substitute it with a new action or a less painful tic. For example, If my shoulder was feeling primed to roll, I would rapidly tap my fingers on the table or shake my hand rapidly. It doesn't always make the tics less frequent but does tends to make the severe ones less painful. Hope this helped!

Thanks for sharing your experience, Joe. I'll talk with my daughter about your idea for trying to encourage a different tic or get some of the tic's energy out some other way instead of the one that hurts.

I think the anxiety reduction piece really is a big part of things. We have made some changes that have helped with that but there is only so much a person can do to reduce external stresses. Getting better at other coping methods for anxiety might be helpful, too, I guess.

There are a few thing wich influence my tics. One would definatly be the noise level. Like for example if I am at the theater watching a movie the tics go crazy when there is an action scene, i guess thats because little or no people will notice them, and it makes it easier on me. But yea definatly the calmer the atmospher is the less the tics will come out, but if there is alot people in the area where you are, there is a high possibility for those tics comming out. But then again there will almost always be tics that are just uncontrolable. Like for example with me I ALWAYS do this criscrossing circular motion with all my fingers. Another that I cant control is, I move my head side to side wile looking at two different objects infront of me. And last but not least do not be surprised if you find here in a quiet place such as in her room reading a book, While just going all out with the tics. example, I myself like to get as many as tics as i can out of my system when im by myself in a quiet place, or I get them out where I think people are not paying attention to me or cant hear me.