I'm part of a private Google Group I created called Twitch & Bitch. Unlike a public forum, it's a place for us TS moms to vent, complain, cry and also brag like heck about our kids where it's only for our eyes.

As much as I know that my public blog here has helped quite a deal of you (thank you for writing and letting me know) it's also crucial to have support without fear of random eyes or unsupportive critics giving a cruel statement when that's not what we need during crisis.

I'm writing about Twitch and Bitch for two reasons.

1. If you are interested in being part of a support group, please email me. When I get at least 5 members I will hook all of you up so you can have the same kind of support I've gotten from the 12 mamas in my group.

2. I want to share an excerpt from a member, Lyn, with her permission. This is one example how in sharing her story about a brother with TS (her son also has it - a mild case) I was able to gain new insight into TS.

It validated a truth I already know in my heart: That my son is not his TS. It's ME with insecurites from my past. My vanity. My worries about "what will this look like to someone else?" when it really is all about "Who do I look like to someone else?"

Lame. LAME.  

I'm so much less of a people pleaser than I used to be. It's not about others. It's about my family first. And I couldn't ask for a better son. I thank God every day for the TS - for opening me up to being a real person, not some phony ass who can't stand up for herself, be who she needs to be for the ones who really matter, and live with true intention. (I'm a work in progress of course.)

So, here's the letter from Lyn.

It is so important that people become aware of TS.  I feel all of a sudden there's a lot more info on it here in Australia... with 60 mins and their stories, the house makeover, and during that show they played a couple of those adds with the
little boy in it.  The add was good because it showed and explained
that he has very minor tics, compared with what is usually seen.

Is it any wonder that people are so scared of a diagnosis?  All they
really see is the worst cases.  It's the same with a cancer diagnosis,
people assume they're going to die, and that's not the case at all.
As I've said before, my brother probably had moderate TS... but I
wonder if it would've been that bad if he'd been treated better.  My
Dad was a creep to him, treated him like a pig, an outcast.  He held a
secret thing too that he wasn't really his child.  My brother wishes
it was true.  Sad.  My Mum was the total opposite.  She adored him and
accepted him totally, as everyone else did.  Honestly, I can't
remember it being a huge issue.

Dad use to call it his "rot".  I'll NEVER forget the day when I was
sitting beside my brother on the lounge {I would've been 5 yrs old and
he was 13}, he was ticcing away and I was staring at him.  He said {in
a tone brothers use with their pesty little sisters} "What are you
looking at?"   My  innocent response {which I later choked on} was
"I'm watching you do your rot".  Well, the look of total hurt on his
face is something I'll always remember.  I wasn't being mean, because
to me it wasn't a silly thing he was doing, and I assumed it was
called "rot".  

But, that was the turning point for me.  At that time I
realised , hey, this isn't funny and he has a problem.  After that I
never purposely stared at him anymore, but nor did I avoid looking at
him.  I just treated him like anyone else.  We still had a our fights,
and I guess I annoyed the hell out of him, esp when his mates came
over... lol, I always wanted to be around him.
There are far worse things than TS, and I'm so happy I have this
brother.

That letter broke my heart. I will NEVER do that to my child. And I know that you won't either, or you would not be here.






 

So my sidebar talks about how I've suppressed 90% of Stink's tics with diet. And while much of this is true, it seems like I'm a big fat liar when we have a bad month. And then I forget all the things I've done to really help out the situation. All I see is a kid who is rolling his eyes and, despite my big talk about how diet really works, I'm a big fat loser.

But the truth is, they do work.

But my husband isn't so sure.

And I'm not saying that to make Rex out to be the bad guy. If anything, Rex sees beyond the tics and only sees the boy beneath them. So I guess that makes me the bad one.

But, tired of a battle with him over my "chemical cocktails" we have stopped all supplements this month. This week we've seen barely any changes. Last month, though? Good Lord, not a good month. But was it the missing supplements? Or was it some changes in diet? Or was it some viruses Stink was fighting that caused the outbreak? We don't know. And will we ever stop them completely anyway? No. Why? BECAUSE HE HAS TOURETTES.

And that's okay. It really is.

It's odd, but a calm has come over me lately. Not that I don't care about his tics. But I'm learning that they aren't him. And I'm rolling with the ebb and flow of them.

The status this week? His tics are almost non-existent and he's still supplement free. But, starting in April, I want that kid back on magnesium pronto. Go to ACN.com and type in Magnesium and tics. There is a HUGE correlation between kids with minor/mid level TS/tics and lack of magnesium. They can talk about it better than I ever could.

I will try and post more this month. Meanwhile, as I always say, your child is your child, tics or not. Remember that! And don't forget to supplement the most important person in this process - YOU. If you are not calm, you can't be the best parent to your child. Trust me on this one, okay?

* Photo taken of Stink with his sister (in yellow) and cousin yesterday afternoon. He was directing them in a show and, can I just say, he was truly brilliant? TS or not, that kid is going to be a super star. And, like I ended my post, trust me on that. (Yours will be, too. Why? Because THEY ARE NOT THE TICS.)

I wrote a post below about diet and TS. For two years I was a diet nazi. Nothing that he was even slightly allergic to was allowed. Maybe once a year on a birthday.

I have since lifted the diet ban. We eat only "approved" foods on a daily basis, but if there's a birthday party or it's a special holiday (Halloween, Christmas, Thanksgiving) we eat a bit of the forbidden foods such as pizza or cake and icecream.

If I was at all wishy washy about my decision to do this, all I had to do was view this photo taken last night at Stink's very small six year old birthday gathering at our home. Similar to the expression he had at his cousin's bowling party last week, my heart melts with joy when I see his exhuberance.

And the irony of my minor food transgressions? No visible tics as a result. Sometimes happiness overrides anxiety over not getting to eat what everyone else does. More on this at a future post.

Also, please see this post below which answers the question about having a child with a person who you suspect has TS. It's my opinion only, of course, and would love to hear yours.


More of my writing can be found daily at BabyCenter and Good Housekeeping.

I'm back. I aim to write more than once/week. If I fall short, please email me. Of all my blogs, this is the one I know people read, but don't comment on much. Being the post whore that I am, a friendly nudge of "Yes, this is making a difference" might encourage me to write more here!

A few small things I've realized over dealing with TS for two years:

1. My son's tics are GREATLY improved with diet. See previous posts on how I figured out what worked best for him.

2. Cheating a little bit at a party does not mean the end is near. Sometimes a bit of joy overshadows the bad evil gluten and the devil that is food dye. Yes, there is a difference between cake and pizza just at parties, once in a while, and a bag full of Halloween candy that lasts ten days. Trust me on this one.

You? How are you? What's up? Feeling okay? Not okay? Accepting life with tics or still pretty pissed off? I want to hear from you! I really do!

 More of my writing can be found daily at BabyCenter and Good Housekeeping.

Before I blindly launch into another tic post, I'd love to hear about some topics that interest you the most. Is it research? How to suppress tics? How to accept them? Medicine vs. natural herbs? Worse case scenarios vs. light cases? Fear vs. how to develop a kick-butt attitude toward everything? Tell me, please!

And happy Monday!

Here I am geeking out with Brad Cohen and Jimmy Wolk at the Hallmark Hall of Fame premiere of Front of the Class. It's the story of Brad Cohen (middle picture) and his battle with TS - how he worked through adversity and not only became a teacher (after 23 interviews) but won Teacher of the Year.

My friend, M (top left) laughed at me. As I entered the lounge before the movie, there were all these stars around us, including Patricia Heaton from Everyone Loves Raymond (who plays Brad's mom) and Maria Shriver, first lady of California. Who do I make a beeline for? Brad!

"I saw you on Oprah!" I shrieked, shaking his hands. You are such an inspiration to me! "Thank you so much," he grinned, totally soaking up the limelight. As he said it best in his speech before the movie, "This is a very surreal experience." I can only imagine.

Throughout the film you could hear Brad coughing and ticking pretty loud (apparently Jimmy's tics on screen set him off... wow, was Wolk amazing) and yet, after a while, Brad's noises became background noise.

I realized how lucky Stink is in so many ways - his TS will probably never be that noticeable. And for those of you with kids who are new to TS, your children will probably not have it as extreme either.

This leads me to the one thing I did not like about the movie. While it was wonderful in showing how one can rise above their setbacks, it did not tell the audience in any way, even through a voiceover at the end, that not all TS is so loud or extreme, nor does it have to alienate our children socially. I think we need to see more variations on TS in the media so that we as moms don't freak out if our kids tic and think, "Oh, no, they'll be shunned just like Brad Cohen was!"

Other than that small issue, the movie was awesome. And Jimmy Wolk? Holy hell, man, he is gorgeous. (The photo does not do him justice. You must watch the movie just to check him out.) Such an amazing actor, too. I see Emmy written all over his face. Look out, George Clooney, there's a new superstar in town.

Front of the Class is airing this Sunday at 7PM on CBS. Don't miss it!


More of my writing can be found daily at BabyCenter and Good Housekeeping.

This is my darling husband with my boy.

Do you know why my husband looks so happy? Because during the initial tic phase/Tourettes diagnosis he refused to look at Stink as the boy who tics.

This is fabulous - don't get me wrong - he loved and still does love Stink for who he is on the inside, not what he is on the outside. But sadly for me, when I was going through my own emotions, I was ticked off. It felt like Rex didn't care.

"Can't we talk about something else?" he'd ask. Or, "For Godsake, Andrea, you're obsessed! Do some writing! Something besides researching tics!"

It's true. I couldn't stop Googling tic and Tourettes. I'd come up with all sorts of freakish possibilities for my son's life, including an existence of seperation anxiety, OCD or social stigmas. I felt abandoned and isolated - so alone in my fight. Where was my husband - my rock - when I wanted to talk about it?!

The truth is, Rex didn't want to talk about it. It's not that he didn't want to help me, but since he couldn't fix the problem, he didn't see why we were still discussing them. He didn't realize that just listening to me was helping. (And I didn't think enough to remind him of that fact.)

"But I think we can suppress the tics," I'd argue, desperate for a sidekick to my Find-A-Solution rodeo. "Maybe," he'd retort back, more than a little frustrated, "But you're grasping at straws! You're going from one diet to the next. There's no consistency! It's like finding a needle in a haystack."

He was right about that - I was like a fish on a hook, shaking back and forth to find something - anything - that would calm Stink's tics down.

It wasn't until I made up my mind that it wasn't that Rex didn't care but that he didn't know how to help (or was just too plain scared) that I finally let go of wanting Rex to handle things the way I did. The truth is, if both of us were nuts, we'd have got nothing done.

My solution was instead to stop talking about it to my husband. I found people who weren't emotionally connected to Stink to cry to. I also told Rex that I would be using a homeopath and, only after I had a concrete plan to go after, would I start the family on a new regime.

This worked out beautifully. Within days, Rex asked why I was so much calmer. I told him. His response, "Honey, you know I'd give a million dollars if I knew how to fix it. But since we don't, I just don't want us going broke financially and emotionally."

I saw where he was coming from. I did. I thanked him for being an amazing father to Stink and helping me to remember the beautiful boy beneath the eye rolls.

Then I fought like hell when he was at work to find some remedies for Stink.

And they worked.

And then Rex was skeptical.

But I told him to suck it up.

And he did.

And the results were phenomenal.

And Rex then told me I was the best mother ever and how happy he was to be married to me.

To which I responded, "No shit."

More of my writing can be found daily at BabyCenter and Good Housekeeping.

I get a lot of emails from moms who are new to the tic phenomenon. They write that they are freaking out. They feel helpless, frustrated, sad and angry all at once. Been there, done that. Here's a snippet of an email I just wrote to a mom. I hope she'll comment here and that some of you will also. No matter how much your friends try to help, if they don't have a child with TS or tics, it's hard to really "get it". I'd like this to be an additional forum of support for you.

Here's my two cents: A few years back, when the ticking got kind of gross (eye rolls, shoulder shrugging, incessant coughing - oh, the coughing and throat clearing!) I thought I'd go NUTTY if I had to look or hear those buggers one more time. I also let those damn internet searches instill the fear of God in me. I worried that Stink would be an outcast - someone people made fun of. It broke my heart. I'd cry and cry and cry.

Finally I just decided one day to tell those fears to fuck off. The world is cruel to the most "normal" people. Why should I - his mother - his greatest advocate - not embrace him? Let the world do what they want. (And with a healthy dose of confidence, chances are they'll be just fine.)

What helped me get to this place is my diet game plan (see post below). Yes, I was lucky that through the kinesiologist I found the right food and supplements that really helped. Some aren't. But I also realized that in cooking for my son I was doing something. I couldn't completely stop the tics, but I could bake my love into his gluten free bread and buy pasta that was good for him. In not spending money on candy I could spend some cash on Disneyland passes and have FUN again. I was doing something positive, not just dwelling on fear.

My saving grace was the knowledge that that I was doing all I could. You'd think after all this baking and vitamin shopping I'd be upset if the tics come back, but honestly, I'm 50% less stressed now, because I know I've done what I can. And while I've suppressed 90% of the tics, like a bad boyfriend, they always return. Why? BECAUSE HE HAS TOURETTES.

More next Monday on dealing with spouses during the initial diagnosis/onset of tics.

More of my writing can be found daily at BabyCenter and Good Housekeeping.

One of the first things I did after getting very little feedback from my HMO on how to suppress tics through diet (and to their credit, it's not their fault - it's a very new concept) was to go to a kinesiologist chiropractor (I'll call him Dr. K) who had Stink tested for food allergies.

Different than an IGE which tests for extreme reactions (like peanut allergies, for example, where kids get deathly ill) we did a blood test called an IGG.

There are a few schools of thought on the validity of food allergy tests, but it worked for us and it wasn't very costly compared to what the literature talks about. We paid out of pocket.

The kit itself cost $200.00 which we got from Dr. K.. Stink's blood was drawn at a private lab for $15.00. The lab then packed up the blood in the test box kit and sent it out for us to Geneva Diagnositics. Geneva Diagnositics then tested it and sent the results back to Dr. K..

Between a few initial visits to Dr. K., the lab fee, the test kit, and the follow up with Dr. K., it cost about $400.00. I'd have spent that in medicine from my HMO and not gotten as concrete a result.

Once we eliminated the offending foods, Stink's tics reduced greatly - almost 90% in the first week alone. (There's a few other things we did also which I'll chat about later.)

Above is a picture of the lab results. Who knew pork would cause such a reaction? Random! I laugh that basically all food issues avoided by staying away from the ingredients of a McDonald's Egg McMuffin.

For a longer discussion, you can check out this discussion here. I am not affliliated with this blog, but it's an interesting conversation and some insight into the differences between various tests, as well as links to other labs.

* BUTT COVERAGE: Some kids have worse tics than others. Maybe Stink is just lucky or has a "light case" but you won't know unless you try. Again, Stink was only 5 when we started. And I'm not a doctor - just giving my story! I know as a mother I would try the homeopathic option and getting to the root of the tic before just covering it with meds first. But I'm not against meds if I need them in the future!

More of my writing can be found daily at BabyCenter and Good Housekeeping.

I am ready to start contributing here some more. Those of you who found me over at BabyCenter, I'd appreciate you keeping the conversations over here now, only because who knows how long BabyCenter will keep that link up. At least I can control my own blog! (Ah, control, the power. If only I could control my son's tics with a big fat remote. Zap! Twitches be gone!

All I can control is giving him the best food out there, lots of love, and seeing my boy beyond the occasional twitches.

Someone who just wrote to me is Rocio. She wants to get pregnant. Her husband has Tourettes and so did her brother growing up. I asked her to comment here about her brother and husband's experiences growing up with Tourettes as well as how they are doing now.

Just in case she paints a harrowing picture - I have no idea about her story - rest assured that there have been TONS of advances in meds, diet and behavior therapy. One person's struggle is not necessarily going to be your son or daughter's. There is so much more we can do.

Let's try not live in fear of these darn tics. Our kids are perfect! If we can produced positive, healthy, confident kids (who sometimes tic) that's more than most people can brag about, right?

And so, Rocio, type away! Let's hear your story! And anyone else, what do you want to learn the most about? I'll try to guide my posts toward your needs.

More of my writing can be found daily at BabyCenter and Good Housekeeping.