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Sulphur Dioxide, Mangos and Acceptance 05/15/2010
5 Comments
 
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About a month ago, my son's tics were the worst they had ever been. One long stead stream of "uh - huhs" and "hmmmms" that rarely had a moment of silence between them.

With these tics were lots of hyper activity... so much twitching, in fact, that even his teacher sent home a note with the subject line, "New Sounds." (They weren't loud at all, but just incessant... ANNOYING. Oh God, it was a hard few days for me.)

As I sat at the dinner table, literally about to lose my mind, my husband asked about diet changes. (This from a man who really thought the whole diet thing was bunkus.) "Nothing other than mangos," I said casually.

He took a look at these "Naturally delicious" mangos from Costco. Sulpher Dioxide was one of the prime ingredients. 

This article talks about how chemicals in our daily food (over 540 permitted by the FDA) can have profound affects on kids. Check out the section called "Avoidance Tactics". It's got an interesting bit on sulpher dioxide. Dried fruit? Very very bad for kids who tic.

Needless to say, when we took the mangos away, Stink's tics decreased by 90%.

For two days, they were gone 100%.

Now his tics are back a bit higher than I'd like: Light" hmmms" and "throat clears" that, compared to severe TS, is nothing big. But it's still distracting. What do I attest to this increase, other than the normal waxing and waning of tics? Too much activity combined with fake nacho cheese at school yesterday. Does it every time.

In closing, let me state this for the record:

1. Does my son have Tourette Syndrome that right now does not have a cure? Yes.

2. Do I think that diet alone and supplements are going to change his neurological disposition? No.

3. Do I need to accept that he has tics and some days he will be noiser than others? Yes yes YES. (That is very hard for me. Another post to be sure. Stink is happy. It's Mama that has perfection issues. I get it. I'm sorry. I suck. It's my lesson in life and slowly... slowly... I am healing.)

This all said - Stink is still not on medication. I do believe we can control many of his symptoms through diet and good habits. I'll let you know if that changes.

Happy weekend everyone!
 


Comments

Lynn
05/20/2010 17:01

Andrea,

I just wanted to say, I love reading here at your site. I found the "Ticked off Tourettes talk" a few weeks ago at a very low time in my life(ok, it's still a low time in my life, but...) and appreciate the humor and information you bring. My son started excessive eye blinking back in 8/2009, the doctor's told me it was nothing and would go away. So, 2-3 weeks later it in fact went away only to resurface this past 2/2010 - this time with facial grimacing. Then in April the vocal hum started and now we have multiple other motor tics. I'm devastated and some days I can barely get out of bed due to my sadness. As I type this my son is rolling down the hill outside playing football with his friend. So, as my hubby puts it - I'm the one not dealing with the tics. Everyone else is fine (for now). Anyway, I am reading everything, already went organic and am eliminating more and more possible food offenders every day. I already got approval from my ped and started him on the Bontech supps, we are up to 7 a day as of today. We are already seeing some improvement in him, but the jury is still out if it's waning or the supps. I'm down on my knees praying for the later. Anyway, just wanted to say "hi" and thank you for a great site. I read "Pass the Zoloft" too! Keep up the faith thing, it's empowering trust me. :)

~Lynn

Reply
andrea frazer link
05/21/2010 09:43

Lynn - I wrote you privately also. Wanted to say again that you are doing better than you think.

Reply
claudia
05/27/2010 06:26

hang in there...it gets easier. i went through the exact same emotions/grief. it was awful. email me if you'd like to vent! it helps to talk to people who can relate. i promise you...this will all come into perspective for you. it's not as bad as you think.

Reply
Lynn
05/31/2010 18:01

Hi Claudia,

Thanks! I truly keep hoping and praying for perspective. Some days are better then others, but even on the good days I walk around with a hole in my heart and a pit in my stomach. Andrea has been great! I'd love to connect with you, but am unsure how to email you...

Best to you,
Lynn

Reply
claudia
06/04/2010 17:50

Lynn,
You can email me at claud1001@wideopenwest.com
Hang in there!
Claudia

Reply



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    TICKED OFF: TOURETTES TALK

    "When You Can't Fix the Tics, Fix Yourself"

    Consider this is your 12-Step Tourettes Support Group where we will encourage each other to:

    1. Accept the tics we cannot change

    2. Change the tics we can

    3. And have the wisdom to know the difference.

    ABOUT ME
    My son, Stink, was diagnosed with mild Tourettes when he was 4. I was terrifed he would curse, shriek, scream and hump busses.

    Quite the opposite, he is highly creative, social and thriving.

    I keep his tics at a minimum through a gluten free/caesin free diet.

    While I haven't eliminated his tics altogether, I'm eliminating fear through a good dose of humor and acceptance.

    I hope you'll join me so we can support each other on this crazy journey. Welcome to Ticked Off.

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    I write weekly for the New Jersey Center for Tourette Syndrome blog. Come visit me, and other awesome parents, for some daily support!

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