If baseline is not tic free then is it TS?

[cara615]

Before a PANDAS dx DS had periods of time where he was totally tic free. After his 1st true exacerbation with severe debilitating tics he has never gotten back to fully tic free. right now he is very low and no one besides myself would ever notice that he is ticcing. But does this mean that he has underlying TS?

 

lydiasmum's post got me thinking about this. I never once thought that ds has TS even when he got the dx from the neuro. I felt in my gut that it was something else. so I am wondering does baseline have to be completely symptom free and if NOT, will we ever get our kids 100% resolved?

[pr40]

i wrote this before on the forum: are you 100%?

I know my immune system is not and neither is my wife's. how many people are 100%?

 

in case of ts, it is possible that there is some damage of basal ganglia that makes a case both pandas and ts at the same time. The question here would be if the damage would heal. at any rate, I am not sure I understand the significance of the possibilities you offer.

[rowingmom]

My suggestion is that you are still having an issue with toxins of some type (bacterial, pesticides, metals) and a decreased ability to deal with them.

[LNN]

I agree with Rowingmom. Despite what the Tourette's doctors would have you believe, there's a lot of evidence that "TS" is an immune or biomedical condition that can also be "cured" and isn't something you just have to live with. It matters less what label you use and more what lens you use. My son's tics were once directly related to his level of infection load (strep and/or lyme). They'd show up during a herx and go away as he cleared toxins. He's been infection-free for a year (off abx) and yet his tics can still return from a yeast infection or more likely, from a mold problem. He doesn't have TS. He has a problem with eliminating toxins.

 

When we find a source of mold (not an infested basement - it can be something small like mildew in the bathroom or mold spores from house plants or a mildewed cardboard box in the basement) and we eliminate that source, his tics go away within days. That's not TS.

 

I'd really consider triggers like mold, yeast, and methylation issues/nutritional assessment. They have been key issues beyond herxing/infection for my son. It's not always "just' Pandas that can become a tic trigger. Pandas may start the ball rolling, but then the body becomes far more sensitive to other issues. Read Scot Forgenson's "Biotoxin Pathway" article - great job of explaining the cascade of events. http://www.betterhealthguy.com/images/stories/PDF/PHA/2007_06.pdf

[nicklemama]

I agree with all the above. My son never ticced before PANS and it was never his primary feature. He did develop very noticeable tics. He's the best he's been in 4 years and has been for the last 6 months. Yet, he still has what I would call little tics that come and go. Eye blinking, mostly. He's got a cold right now and he is having some eye blinks. He's not 100%. At this point, I'm not sure if he ever will be. He does not have Tourette's. I'll be honest and say I'm kind of a Tourette's doubter, at the risk of making some moms really angry. I don't doubt it exists. I doubt it's as described and there is newer evidence it is inflammation based.