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Since Alex is 8 we have been very open with him about what has been going on...he recognized his tics, we called them 'figits', if other kids asked about them he simply told them they were a "habbit he couldn't break", and he always maintained he felt he "had" to do the movement involved...his fixation on being and doing things even "even". And luckily for us, he was never embarrassed by them...

 

As of around May 20th, after 6 weeks of prophalactic antibiotics and about 14 weeks after initial onset...his tics disappeared completely...

 

 

Today, we were driving in the car and he asked for a piece of gum...then a few minutes later exclaims..."Mommy...my tics are gone!!!!" I'm not sure if it was motivated by shock, relief, maybe a little of both...but he was very excited about it...

 

I laughed, and told him, I knew that...they have been gone for a while now...but I was curious and asked him what suddenly made him realize it...he said he didn't feel like he "had" to do something ( that normally would be related to the gum chewing...)

 

So needless to say, today...has been the best day since Feb 13th....

 

--Lisa

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Really great news! I love to hear about this for his age and being so aware of what is going on and how much he's improving.

 

Funny about the gum. That was how I realized my girls were doing so much better a few years ago after all of our OT for sensory issues. They used to chew so much gum and I realized they didn't need as much to cope every day.

 

Susan

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  • 2 weeks later...

Lisa, WOW!What an awesome story! That is great! I am so glad that Alex is doing better! What a sweet boy. Thanks for posting the update!

 

My son (5 and a half) is doing better. Was on antibiotics (Cleocin Pedatric) for 7days and then he developed a rash all over his legs, hands, some on chest too. Wehad to stop the cleocin, and then I convinced the pediatrician to give us anotherantibiotic. Now he is on "biaxin"(spelling?), and is doing ok on that one so far. We have another few days on this one, but that will make about 17 days on an antibiotic so far. His OCD type behaviorsare gone, and I only notice occassional throat clearing tics. He's doing great so far.

 

I went for a walk tonight and thought about you and wondered how your son was doing. I am so glad he is better. :)

 

LMAMA

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  • 2 weeks later...

Thanks everyone...the past few months being our first "experience" I am just so thankful for this reprieive....

 

and just wanted to add...about 3 days ago Alex told me he no longer counts his steps or feel things need to be even...(the obsessive step counting was my very first indication that something was not right...but I had chalked it up to inherited OCD behavior (in my family not having some neurotic behavior would be abnormal) ...but the tics were what pushed us over the edge...again, I had noticed this behavior was gone a while back...but having him notice it really put my mind at ease...I feel he may be in a position now to alert me if things start to go in the wrong direction again...as opposed to me having to be so vigilant and keep constant monitoring...wondering if a weird move or behavior is the start of another episode...

 

So, to be able to sit here now and know that both his mental and physical symptoms are gone makes me hopeful...I wish I could say I believe they are gone for good...but I've resigned myself that we will most likely be going through all of this again at some point...at least now, though, we have a wonderful neurologist...and I have this amazing support system right here...it was all of your stories and advice that saved us...I never would have pushed for a strep test otherwise...and for that I thank all of you from the bottom of my heart.

 

You are all always in my thoughts and prayers

--Lisa

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