New here, could use an ear.

[Guest laurensmom]

Hello all,

 

I am new here and new to this stuff in general.

 

My daughter may have TS but I've read so many different things about it I'm confused.

 

She started blinking for just a couple days this time last year, and that went away. She then started with a verbal tic (repetitive phrase) that went away, she then began clearing her throat (which I chalked up to allergies) and recently began motor tics. Her motor tics are increasing in severety and moving to various body parts, her vocal tics are also varied.

 

What makes for a diagnosis of TS vs. a transient tic disorder? From what I've read she would have to have both motor/vocal tics (at the same time) for at least 12 months, with no longer than 3 months in between? According to this criteria, I'm not sure we qualify for tourettes because they have not been present together (before this week) as far as I recall.

 

Also she had issues at school saying it was too loud and that everyone hated her etc. She is self depreciating and seems to have self esteem issues even though we have tried very hard to raise her with a healthy self image. She also may be a bit obsessive.

 

My heart is breaking for her and I want to help, but I don't want to put her on meds.

 

I guess my first question is, 1. Might this go away and NOT be TS?

and 2. What would you recommend as the most successful/important vitamin or nutrient to try and help her out?

 

Thanks again for your input. I am still in a bit of shock. Thankfully my daugter is a trooper and says she doesn't mind her tics. But tonight she started to cry a bit about it, and that kills me.

 

Laurensmom aka Denise

[Claire]

Hi Laurensmom,

 

You don't say how old your daughter is? Too soon to know if it is TS or not, but either way you can do a lot to help her.

 

It isn't a simple answer--please look at the threads.

 

This thread summarizes a number of methods that worked for many here

http://www.latitudes.org/forums/index.php?...&st=0#entry5005

 

Recent group advice to another newcomer:

http://www.latitudes.org/forums/index.php?...p?showtopic=866

 

Good luck!

Claire

[Guest Guest]

My daughter is 6. Thanks for asking I'll look over the threads you suggested.

[Chemar]

Hi laurensmom

 

i dont have much time to post right now but just also wanted to welcome you to Latitudes.

You will find a wealth of info here that will give you a lot of insight into helping your daughter, whether this is Ts or transient tics.

 

Just take it a day at a time and absorb as much as you can...it can all be very overwhelming at first.

 

We are all here for you so dont hesitate to keep asking....there is usually always someone who will have an answer or a similar experience to share.

 

It is VERY wise to try to stay away from the meds that are currently prescribed for TS or tics.

 

we look forward to getting to know you

[Guest Guest]

Thanks everyone, my daughters symptoms were horrible tonight:

 

Hitting herself in the head

throwing herself on the couch

rolling eyes back in head

kicking and hopping

 

She was so exhausted that she was crying. I am desperate for help. I don't want to try the meds, but I can't see letting her live like this as it's reached a level that she is upset with.

 

*sigh*

 

Do the symptoms worsen at night? I'm beside myself.

[Guest laurensmom]

Sorry, I posted as guest earlier.

[Claire]

Laurensmom,

 

If the symptoms are that strong and you are feeling that desparate, I strongly urge you to look at the one 'fewer tics in one week' thread that I posted. Normally, the approach is to read and read until you decide on a program.

 

That thread is more 'drastic' in that many measures are done in one week. If you have time to read it (while she is in school tomorrow?) and go shopping...do you have a Whole Foods or Wild Oats or other healthfood store nearby?...you could get started right away, then do your reading later. There are several approaches listed--you could also pick the one or two that seem doable.

 

Some of these tics/compulsions are indeed self-injurious. Chemar has a thread she bumped up with supplements that might give some reprieve in the interim, but she is the expert there, not me.

 

My short-term remedy thoughts are more elimination of certain common triggers. Then later figure out which ones you can add back in.

 

Soooo sorry for your pain and hers. As Chemar says--the drugs are so risky and this message board is living testament that other methods work.

 

I know sometimes that running laps has helped some--or an epsom salt bath can be calming, but bottom line is you have got to remove triggers then help her system heal through alternative treatments.

 

I don't want to repeat the post, but artificial ingredients are a big trigger for many as are screens (TV/Computer/Gameboy). COMPLETE elimination of both for a week has a good chance of helping.

 

Then you look at other possible food triggers (e.g. salicylates/amines in most fruits, milk, wheat, corn, soy...) supplements and possibly metal detox--much more complicated. And find a good alternative MD--they can really help--I strongly believe you will ultimately need professional guidance if the tics are that bad--just someone who will try this without drugs.

 

Claire

[Guest Jeff]

Hi Laurensmom, So sorry to hear what you're going through. We all know your pain, but we've all also been fortunate enough to have found the things that trigger the tics, and have found non-med ways of controlling them.

In my family's case, the biggest triggers have been artificial colors and flavors that are added to so many foods. Once we eliminated those, the tics became a non-issue. I would suggest that you take a look at what Lauren has been eating lately. Colored cereals? Colored candies? Hi C or KoolAid? With Halloween coming, there might be a lot of candies floating around the school. Our school was brilliant enough to serve "candy apples" yesterday - the whole district. Grrrrrr.

As the others have said, there is a wealth of info on this board. Take a look at some of those postings - especially the threads that Claire listed. Then ask us all the questions you want.

 

Hang in there. I know it's heartbreaking right now, but you will find a way to get the tics under control.

Jeff

[LuluGirl]

Hi Denise,

 

I just wanted to encourage you and let you know that we all have been where you are right now. It's all new and scary and your heart breaks for you daughter. However, there is light at the end of the tunnel! You just need to spend some time (a few weeks? months?) studying Lauren, trying to figure out what triggered her latest tic. What did she eat? Drink? Watch on TV? Then little by little (and I do mean little!) the pieces will start to come together. A vitamin regime is very helpful because most of us are deficient. Chemar has an extensive list that works but in case you're looking for a "starter" plan, this is what I give my 11 year old son. We are in the same boat as you and not sure if it's transient or TS - either way it's treated the same. I give him a good multi, b-complex, vit. C, zinc, magnesium taurate (Read all you can about this on this site!) and fish oil. This, along with eliminating the foods he's allergic to (only about 75% of the time) and watching what he drinks (nothing red, try not to have blue or yellow) has seemed to keep his tics at bay for a few months now.

 

So there is hope! You have ventured down a road that you probably don't want to be on but help is HERE for you among other places. This is such a warm community of people and I know you'll get the support you need. Hang in there!

 

Lulu

[Chemar]

Laurensmom,

.

 

bottom line is you have got to remove triggers then help her system heal through alternative treatments.

 

And find a good alternative MD--they can really help--I strongly believe you will ultimately need professional guidance if the tics are that bad--just someone who will try this without drugs.

Denise

this is excellent advice that Claire gave you.

 

My son had VERY VERY VERY severe tics, that even caused hospitalization because he would be injured from them.

The meds honestly made things much worse, because they caused psychosis.

 

Please start out reading the article by dr Rogers on tic triggers, as often when tics are as severe as you describe at night there is usually a big trigger at work

http://latitudes.org/articles/finding_triggers.htm

 

Claire has also pointed you to some very valuable threads here

and

here is the one in which I have tried to explain what has helped my son

http://www.latitudes.org/forums/index.php?...p?showtopic=687

 

We are all here to help Denise. I know just how scared you are, but there truly is light at the end of the tunnel.

[Claire]

Lauren's mom,

 

I am going to start a thread on stimming vs tics. Not sure all your child's symptoms sound like tics. Some are new to me. We do have threads listing common tics, but I would like the comparson.

 

Claire

[Chemar]

Lauren's mom,

 

Not sure all your child's symptoms sound like tics.

Claire

 

They are documented tics, albeit complex ones.