So worried, daughter has tics

[mert]

Hi Chemar, by elasticity I mean ‘tics changing form’ rather then waxing and waning. 
 

While I value anecdotal evidence, I find it pretty dangerous as it will most of the time mislead. (Ie, thousands using magnesium pills) There is a reason modern science and medicine has built rules for proper research. 

[Chemar]

Tics changing form are part of waxing and waning.

I totally disagree with your assessment of anecdotal evidence as someone who spent many years in medical research. I have seen first hand how scientific research is skewed - whereas anecdotal evidence often leads to more valid scientific research.There is however scientific research that shows the effectiveness of magnesium supplementation for Tourette Syndrome.

However, one of the important things always is that there are multi-faceted approaches to healthcare, and not everyone will always agree. The essential thing is that people are able to find help and healing.

[mert]

We can agree to disagree, however I think we are saying the same thing with different words. I don’t say anectodal experience is not useful, I think, without a controlled and peer reviewed research, trying to conclude from anectedol evidence can lead to significant problems.  
 

And if you are referring to the research paper from 2009, what I so far found, what people refer is not the results of the paper as the paper mainly describes the ‘plan’ for a trial, but a paragraph where author calculates the minumum number of patients required based on previous phase II clinical trail of 10 patients only (I couldn’t find any reference to that particular trial, but 10 patient is too little to conclude a result anyway) if you have anylinks you can share about this subject I can read them and change my mind and start using magnesium again. 

[Chemar]

I really don't want to engage in disagreements, as that just isn't why I am here. 

Nor am I now, or have I ever, tried to suggest magnesium is beneficial to everyone who tics.

But when my son was suffering from severe tics many years ago, after horrible effects from the medications prescribed, I found Bonnie Grimaldi's hypothesis on magnesium and other nutrients helping to reduce (not "cure") TS tics. Her initial writings formed the basis for other research. It was life changing for my son! For me, the only result I needed was to see for myself just how beneficial it was for my son. And as I have stated many times, we always worked under supervision of a trusted health professional, and I used my own training to be diligent in checking things out carefully.

I'll repeat too what I have said since the start of our TS journey - there are many different reasons that people tic, and many different ways that may help them to tic less.

I had only mentioned the Tic Triggers book in hope it may be helpful. So I will just leave this discussion to avoid detracting from the benefits others may find, and wish you only good progress as you seek to help your child as well.

 

 

[mert]

I value your experience and since (unless allergic or renal issues present) mg is harmless, it can be tried. Given your positive experience I might also retry it in the event of peaks. (I read the hypothesis though wouldn’t consider it as a clinical trial, but still valuable material) 

I did not read the tic trigger book, so won’t be correct if I comment. My experience is, which is anectodal and should not neccessarly be same for anyone else, tics change so as some/most of the trigers. And for my case I figured out that unless it causes extra stress, repeated triggers can shorten the duration of the tics. 
 

ie, Swimming googles caused a lot of tics around the eyes and I tried avoiding them as much as possible. Only after I gave up avoiding them tics went away. Same for voleyball , she had specific tics  that started immediately when we started playing volleyball, i kept on playing and they went a way in one week. 

Thanks a lot for sharing your thoughts, I think we can learn from each other. 

[madimi]

I have seen the same things in my son a haircut triggers waving his forhead, playing football it triggers pulling up his football socks constantly etc....sometimes i think his brain is on repeat like everyday gestures we do stay on repeat. And i like to believe in the science that the brain is still inmature and will correct itself while getting older. In the meantime i stay alert for any other symtoms. 

 

[madimi]

Hi, 

Sadly my son has developed a eye rolling tic. Mabye anyone advice how to handle this because at the end of the day he complains about a headache!

thanks

a worried mom

[mert]

32 minutes ago, madimi said:

Hi, 

Sadly my son has developed a eye rolling tic. Mabye anyone advice how to handle this because at the end of the day he complains about a headache!

thanks

a worried mom

I’d recommend controlling anxiety if there is any and spending time with activities that require his/her focus (activities that don’t increase anxiety, ie he is not afraid of loosing the game etc) 

Tics are very personal and it’s not easy to estimate how long this tic will be around but my experience with ‘eye’ related tics are, they are among the ones that stay the shortest time. Usually they go away within 1-2 weeks (in our case) , but they usually did come back couple of times before they went away for a log time. But again this is my experience. 
 

PS: you may already know, but make sure that you really really ignore the tics. Don’t let the little one catch you looking for the tics. 

 

[madimi]

Hi Mert thank you for your reply.

At the moment i feel like we take 2 steps forward and than 3 back.

From having very very mild tics for 3 years now suddenly a big rise and i think at the moment we have at least 6 tics active, eye tic a nose wiggle and playing with the air between his lips which creates a sound ( best way explain) and a ocassionally throat clear. I been trying very hard to keep anxiety down been going every day to the beach, at those times tics are almost absent. But as soon were home non top tics

The eye roll started few weeks ago very frequent for 2 days and than subsided to mabye a couple times a day, till yesterday again very frequent.

So on and all the last 6 months we have seen big increase in tics and many changed form. Im starting to lose hope a little bit especially since i had hopes with school over he would be more relaxed.

Well this was me pouring my heart out once again.

 

[mert]

I hear you. We had gone through the same, after 2 years of cool down, we had a peak 2-3 months ago. And now it went away almost 90%, we are not back to the lowest levels but close. 
 

In the mean while I noticed that, while she looks though as nail outside she is disrupted if I get angry with her for a reason and she thinks our relationship is hurt (internally). That’s my guess by the way, as a parent. Then her tics get elevated rapidly. I am now focused on controlling the way I get angry and emphasizing that even at my angriest moment she and wify is my number ones and it’s quite ok that we have these kind of moments now and then. 

[silver77]

Hi @madimi - sorry to hear about the eye rolling tic.  As I mentioned in previous posts my 12 year old started with that in January, after a couple of weeks it went away, then re-appeared in April, now it's gone again - the occasional multiple blink of the eyes, but nothing like what it was (for now).  Her throat clearing tic however is another story!  

My 8 year old still has frequent tics, but have stayed fairly "mild".  She is still doing a left eye wink, bottom lip stretch, slight stomach contraction, and I've noticed her left big toe is constantly moving.  She has a throat clear/snort type sound she makes, it's really hard to describe, but that's the worse of all of them right now.  

I try to keep positive, some days are better than others.  She doesn't seem bothered by them.  The only time recently she's mentioned any of her tics to me was yesterday when she fell off her scooter and scraped her chin.  Unfortunately her bottom lip stretch impacts the chin with the movement a bit, so she was feeling sorry for herself about that tic as it was hurting her scrape, but today she hasn't mentioned a word about it.  I do see symptoms of anxiety in her and I find it's getting worse, so I am going to be looking into some therapy to help with that, as from what I've read anxiety can also make tics worse, so perhaps if we can help manage that, her tics may get better.  

[madimi]

Hi Silver,

Im glad to hear the tics are fairly mild. although i understand how hard it must be for you to go through this with both your daughters. We also have a appointment 27 July for a evaluation with a therapist. 

Most days i get so frustated with myself that i let the tics control my life especially at moments i catch myself only seeing his tics instead of the amazing boy he is, and it makes me feel like a  bad mom.

The good thing is he never says anyting about his tics and is very happy indeed, i also noticed many times he is not aware that he is ticcing.

I wish you wish you all the best with your daughters.

 

[madimi]

Hi everyone,

Wondering how everyone is DOING? 

A friend of mine suggested Neurofeedback she had good results for her son.

Anyone here have experience with this?

greetings

[mert]

Hi, 

Never heard of Neuro feedback therapy so I can not comment on it. After a small peak few months ago, we are at the lowest levels since tics have started. Even I can not detect them any more, sometimes I feel like I saw one instance but that's all. Probably we will see wax and wane so I am not holding my hopes very high but so far so good. 

[MLee]

Mert,

What do you think helped them go away?