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Course of TS


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My son is back to severe at this point. 3 vocals and 2 motors every second it seems. I know the course is unpredictable but since he is only 5 and is not responding to any of the holistic treatments I am trying does this mean nothing will work? Should I expect that he will get worse over time? Are we looking at debilitating tourettes down the road?

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Hi Cara sorry to hear your son is having a rough time at the moment with his tics. Has anything changed in his diet, or new vitamin addition or is he unwell etc that could have bought on some new tics? We didn't have instant or even constant inprovement until just recently. We had days were there was really such little ticcing that it was like he never had them and then the next day it was back to multiple. It really only starting to even out the more we worked out what some of the issues/triggers were for my son. I don't think you could really predict what his tics will be down the track, I thought my son was only going to get worse or at least stay the same but now 6months on i'm feeling better about it all.

 

What are you currently trying atm?

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Right now we are on glutamine, probiotic, cod liver oil, NAC, and just started methyl B complex for his methylation dysfunction. We do HANDLE therapy which is not working IMO and we are gluten and corn free as best as we can be.

 

How severe was your son at his worst?

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I don't know if I have mentioned this to you before but some people with TS tic more when they are on fish oil even though they do fine eating the types of fish that the oil comes from

 

There really is no predictable course with TS...it varies from individual to individual.

 

One thing is certain...you can never make the assumption that it will get worse and you can always have the hope that it will get better.

 

Plus, especially in a child so young, tics frequently resolve mysteriously on their own

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We saw our integrative physician today. She feels that we have enough information to believe that my son has candida. All the markers were there from his blood test. So she suggests we start Nystatin. Its given 4x daily for 8 weeks. Anyone have any experience with this and what I should look for?

 

i am thinking of waiting a little while before I start the regimen to give his body sometime to normalize with all the other changes I have implemented.

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If you search Nystatin in the search function there should be a heap of posts on it. With everything i've read on it i decided not to use it but then again i didn't have a Dr helping us that i could get it from anyway. I chose to use a natural/herbal product for my son, I would have liked to try the candida clear by NOW but couldn't get him to take it. We also did and still do pretty much follow a anti candida diet.

 

My sons worst was really just vocally, The high pitched screaming and very loud "Ah" also yelling "Yes" and "no" and using words out of context etc. Motor wise he never had any complex body movements. We had some light head shaking, reaching out his arm or raising it above his head, Feeling like he had to lick things plus more but none very severe. I really started changing things though within 2 weeks of his tics being very present so i imagine they could of gotten a lot worse. So thankful i found these forums in my searching :)

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A number of members here decided against Nystatin and instead opted for more natural anti-fungals for candida.

 

Nystatin is a drug. It works by weakening the fungal cell membrane, allowing the cell contents to leak out, so killing the fungus. Not something I would want to do to an already compromised system!

 

http://www.drugs.com/cdi/nystatin.html

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Cara you should not be all worried because of my comments, but only reconsider because *you* have read and decided based on the info about the method of working of the drug and it's potential side effects.

If you trust your doctor, and she feels it is safe for your child, then you should follow her advice.

 

My posts were only to point out why many others here have decided against using it. As you had posted mentioning only "nausea" as a reason not to continue using it, I just wanted to be sure you had actually looked at the way it works and also at the rest of the potential side effects.

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