This seems to be the season for kids to tic. Call it the end of year excitement with school, seasonal allergies, and never to be underestimated, CHLORINE - yep, that's a huge trigger.

Rather than re-invent my story (cause I'm lazy and tired) I'm going to cut and paste a post I added for my Twitch and Bitch group last week.

The question was: If you're doing all this food elimination and supplements, and he still tics, then how do you know it's working at all?

Here's my answer and would love to hear your thoughts.

Hi all -


First off, we all seem to be in crisis now! For us, Stink has been clearing his throat four times/minute for about a week. The eye rolls were out of control a few days ago and now are down to a few hard stares. The hums are a bit less, but taken over by the barking coughs.



I decided to give him some sucking candy to see
if swallowing spit and having something quieter to do would "replace"
the clearing. Everything has sugar, of course, and tons of dye. The
best candy I could find, ironically were... get this... TIC TACS.
Stink: "You mean, to attack the tic, right?" Too funny. I only
offered him candy to help his throat because he was complaining how
sore it was. Either he has strep (a good reason for the tics or it's
just from the constant barking. I think the latter.)




Regarding some of your food questions - I stick by the diet 100%. I
would not have gone gluten/dairy/peanut/citrus/soy free if his allergy
test did not show he had this issue. We have had very very good
results up until now. He did cheat a lot last month, plus school
ended, plus he's swimming (chlorine is awful for him) AND he's not on
any enzymes/probiotics now. We will reintroduce those, along with a
very steady diet, by end of August.




As far as enzymes and probiotics go, I think for us what happened is that
once his gut cleared out, and we stopped (due to my husband's concern of over medicating him with stuff we really don't know a lot about) he rode on auto pilot for awhile. This month is a case of the bottom falling out.



Also, the reason I'm not freaking out altogether is that I've
slowly started to accept that he has Tourettes. All the diet changes
in the world are not going to keep him from ticking if it is his
nature.




But the thing is, my son is happy. I mean, beyond happy. And his tics
would undoubtedly be so much worse if he wasn't on a some steady diet.
I know I'm going to do more, including giving him an OATS test for
heavy metal testing in August. That, combined with some quiet time
this summer, more probiotics in August and perhaps the magic tic tacs, all will be well.



I don't mean to be glib. Head bobs, kicks, eye rolls, facial
grimaces... it can suck. But really, our kids are not these tics. And
I just refuse to live in fear over it. I don't believe God makes
mistakes.



If some kids are going to make fun of Stink in the future,
sure I"ll cry. But I've got a few years still to keep him on a
positive path so that by the time that happens, we'll deal with it.
He'll have friends that matter and those that are mean can kiss his
ass.




And that's all I have to say for now.

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!