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vvny

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vvny last won the day on December 4 2016

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  1. Hi All I am looking for any pointers if neurofeedback helps Tics in any way ? This treatment is a significant investment and is not covered for TS by insurance. I have found a couple of Doctors offering this in NY and still debating if its worth a try due to the time and money involved in this. Any feedback would be helpful. Thanks VVNY
  2. Hi Any updates on neurofeedback Elise ? I am looking to start this for my son.
  3. Hi Everyone I really need some help on Guanfacine that I recently started for my son after trying several things of diet and supplement and lifestyle changes nothing has helped him so far other than tics waxing and waning and now that he is finding it tough we have finally decided to give in to prescription that he is 10 yrs old. Any one with any information on how long does guanfacine help tics if it actually does and any serious side effects from stopping it later ? Do we need to keep upping the dose down the road ? Its been 2 days he is on it and he is so drowsy and lethargic and we are not liking him this way one bit. Thanks again VV
  4. Hi All after trying many years with combination of supplements I have finally given into considering medication for my son entering 5th grade as his Vocal tics are really bad and doesn’t seem to be getting better . Guanfacine is my first try...any thoughts on this working long term for tics or is it a waste to even start it if it doesn’t work long term? Please help. thanks VV
  5. Hi All I am in two minds if I should start my 10yr old on medication . We have Tenex and Propanalol prescribed for him and still holding on to it. We have managed with supplements so far and its been ok and manageable until now. My question is it worth starting Tenex ? From what I have read many posts have reported relief in tics in short term but seems to have stopped working long-term when tics come back more forcefully . Can someone who has been on this long-term share some advice if this is the case ? Any help is appreciated!
  6. Hi Sirena When you meant enough of it how much of gaba and ltheanine is your son taking right now ? If you can please share what he is on and his weight it will give me an idea to what my son might need of the same.
  7. Hi Kathy/Jason/JMACJA I have 10 yr old son as well whose tics are extremely flared up currently and we are debating if we need to try medication. He has had tics since he was 6yrs old and was doing antibiotics regimen (PANDAS/PANS) which we now stopped as it stopped working. Does stopping guanfacine make tics worse or more pronounced at later stage ? I do not want to start something that can help his condition now but make things worse for us later. Please advice as I am confused on this .
  8. Cary How has the improvement been for your daughter so far ? We are scheduled to see Dr. K today.
  9. Hi Everyone I am back on this forum after a break . My story so far ...my son's tics started around 2 yrs ago and he is 8 yr old now. Started after a strep infection so doctors think its more PANDAS and PANS.But his tics are pretty consistent even without any illness these past 2 yrs.He is already on GFCF diet , bunch of supplements , CBT for tics , homeopathy . We eliminate everything that we think can trigger his tics .But frankly nothing at all has made a big difference till now ! It just seems that none of this is helping at all ! Am I missing something ? His tics are both vocal and motor and gets very bad at times . I am not sure if there is any light at the end of this tunnel ! I wanted to know if anyone has tried CBD oil to help with this condition ? This is the next thing on my list ! Thanks Vik
  10. Hi Tanya We live in NYC but we are seeing Dr.N in CT .Please msg me if you need details. She is also on the PANDAS network
  11. ok thanks ....I was wondering if anyone had experience using it to reduce tics or TS due to auto immune issues ?
  12. Excitability has been of our son's main triggers too . Is there any supplement to help with this ?
  13. Hi All I was wondering if anyone has tried Amantadine for treatment of tics/TS and PANS related conditions ? Our integrative doc has suggested to give this a shot as she claims it greatly helps ADHD , Autistic kids and has a great anti viral...I am a little skeptical so would like some inputs if anyone has tried this before ? Thanks in advance! Best Vik
  14. Hi There I have sent you a message with all details you have asked...please check ur inbox Best Vik
  15. Hi Sheila Sorry for the late reply as things are slowly starting to get back to normal past 4 days at home.We did see a neurologist and he does not want to prescribe any tic medication as of now. My son came down with a viral fever for 10 days and post viral his tics flared up again. He is on antibiotics.We are giving him mag taurate supplement this seems to have helped a bit to bring down his flare to 40%. He is back to school past 4 days and keeping my fingers crossed ! We will continue to monitor him and keep you updated ! Best Vik
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