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anyone else get a bad vibe from TSA?


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I should start by saying I havent really been on the tsa site since I found this forum, and I didnt give them much of a chance. I did find the factual info and even some coping tips helpful but found their referal list extremely out of date. Also they seem to be very pro medication, I dont recall any talk of alternative therapies, is that just my bad memory? afterall it was at the begining of all this for me so I was a bit of an emotional wreck.Anyway with leles recent comments about tsa I just got to wondering about them and if Im just being my sometimes synical self? I thought maybe some more "in the know" would know if tsa gets funding from pharmacutical companies?

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I completely agree. The referrel list was no good for us as the doctors they referred us to knew nothing about Tourettes. I also inquired about the Dr. Sims mouthpiece and they wanted nothing to do with that as well. I would think that they would be interested in exploring all and any options available to help TS.

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Hi

 

TSA has been pretty resistant to alternative stuff and yes, they tend to only refer one to "conventional" doctors. They have had Sheila as a guest speaker in the past so at least they dont totally close off alternative ideas. When my son was younger, he was invited to be on a Q&A session to discuss the treatments that had helped him. He also spoke at one of the meetings that Sheila was guest speaker at.

 

they do have helpful info re getting accommodations etc at school, but if you are looking for any alternative or "out of the box" thinking...they are not the ones to go to

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I completely agree. The referrel list was no good for us as the doctors they referred us to knew nothing about Tourettes. I also inquired about the Dr. Sims mouthpiece and they wanted nothing to do with that as well. I would think that they would be interested in exploring all and any options available to help TS.

 

i agree also and just like the link below someone posted on the pandas side, the neuros don't want to hear it...fingers in their ears...going blah, blah, blah

 

 

http://www.ctv.ca/servlet/ArticleNews/stor...ub=TopStoriesV2

 

 

I met with another neuro yesterday(if you recall i talked with a neuro in PA about 2 weeks ago)...looking at chonidine(does it matter if its generic or brand name?)....but agian like the other thread i started, offered me no hope as to his future...None!

So is this a death sentence....why is the only next worse thing a death sentence.."oh he could have cancer" that is why every parent who hears this diagnosis, i believe dies slowly inside....the neuros are killing me, killing me.....

 

one more thng...looking at get ds a 504 plan..he his smart enough but his tics can get in his way...does this effect him as he goes to college or scholar ships or getting a job????

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OK....

 

This all happened 20 years ago......so, my memory might be faulty....

 

But I first contacted TSA.....and got their newsletter, etc (there was no internet then....at least not in my life)

 

And then ...as I recall......they started some "alternative" treatments for TSA newsletter .....basically because they wanted to get that (althernative) stuff out of their main newsletter.....that lasted a short while.....then this Sheila (rogers? of this site) (in my recollection) took it over, ..to keep it going....with no further official officilation with TSA.

 

So that's how I came to recieve the "lattitudes" newsletter....first it was called something more specific to just alternative treatments for Tourettes.....then it became broader for other neurological/mental issues but still same alternative therapies....and they named it Lattitudes.

 

I lost touch with all of that stuff after my son "got better"......then, more recently, came across some old newsletter here, and wondered if it was still around....googled it up........and found all of this!

 

 

So cool to see this is all here...

 

 

 

On a more recent note, ....we have a syndicated column in our newspapers here called " Ask Dr Gott" (I think his name is Peter Gott). Have any of you seen that? Yesterday (I think it was, if not, the day before) someone had written specifically to ask re: alternative treatments for TS. He wrote that their question caused him to have to do alot of research on the question, as he (admittedly) didnt know. He then wrote about TSA, and how helpful TSA was/is, yada yada, and general info on TS.

 

It made me wonder if anyone affiliated with this site had seen that article or responded to him?

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Good.

 

 

 

I just googled it up.....("Ask Dr. Gott")

 

He has a Facebook page, but not a website (there's something listed....but it just redirects you to advertising continually)

 

This is his facebook page:

 

http://www.facebook.com/pages/Ask-Dr-Gott/59834354635

 

 

I dont have facebook account, and dont really want one.....but anyone who does.....you could probably post a link to here on that...

 

 

 

It's really a shame that all the folks who read that article will be directed to TSA who will tell them "nothing" useful exists.....

But when folks write in to him with alternative "treatments' (e.g. certo and grapejuice for arthritis, vicks vaporrub for toenail fungus, etc) he publishes them .

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Hi everyone. . . Laurena82 has a great memory for things from so long ago! Our connection with the TSA is this:

 

About 20 years ago a woman named Ginger Wakem started an alternative therapy network and the TSA carried one of her fliers. She was disappointed that TSA medical and scientific advisory boards were not interested but she was excited and networked on her own. Eventually I took over where she left off. When I also could not make progress with the TSA, I started ACN.

 

We had a print subscription publication, Latitudes, and assembled a wonderful medical board that covers a number of different disciplines. Then we switched to an online newsletter. Meanwhile TSA quit carrying Ginger's flier.

 

The TSA is exceptionally resistant to any non-drug approaches beyond behavior therapies. What the TSA is good at is general education, especially for school related needs. They have a number of support groups run by well meaning people who are limited by TSA guidelines. Some groups split off so they can have more freedom. Overall these groups provide an important service for families needing support.

 

Unfortunately, TSA has a monopoly on Tourette information from a PR point of view. They have millions of dollars and have always managed to squelch any PR opportunities our small organization has had--even when producers have filmed our efforts and been excited about what we were doing, or when producers gathered success stories from our forum members whom they wanted to include in their documentaries. This is a fact--the producers tell me why they had to cut us, and there is always a TSA connection.

 

Some people within the TSA know that we are going in the right direction, but they tell me their hands are tied. The TSA assigned a "liaison" to our group from their medical board, but it was more window dressing than anything and no longer exists.

 

I once spoke at a TSA national conference but it was many years ago. When my book Tics and Tourettes came out, at the next TSA conference they had a medical panel do a presentation on alternative therapies. I was not invited to participate, and they basically told families there weren't any studies and implied the doctors involved were quacks. I was expecting much more from them. But at this point I have no illusions. They are who they are.

 

This is TSAs current statement on alternatives: HERE

 

They link to our organization on their site, which we appreciate.

 

It will be a long time before TSA provides help to families who are looking for therapies beyond drugs. Once the studies finally start, "more studies will be needed." You know how that goes. The TSA should generate interest in these types of studies now so researchers are motivated to do them. They have the power to do that.

 

In the meantime, it's all about forum members like you, and the practitioners who understand the role of the immune system, the environment, and diet in neurologic disorders--and others who are open to a number of different approaches that can affect and improve brain functioning.

 

ACN is the key voice for non-drug therapies for tics and Tourettes, and fortunately we are still here -- after so many years.

 

I have now seen Dr Gott's article, thank you for pointing it out! It would be great if a number of us could respond!

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Thanks so much Sheila, for your response and for everything else!! I spoke with you a couple times on the phone. Thanks to everyone else too! Sounds like this is a real problem. Alot of money (millions), which could be put to very good use, instead going to well intentioned bureaucrats! It makes me sick and puts a fire in my belly to do something about it. Having to many thoughts right now and probably shouldn't spout off to much. But I will do some digging next week.....I'll be in touch.

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