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Everything posted by vvny

  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
  16. Hi there I really feel for you . We have been through several flare ups like this with our 8yr old in the past year .He has been getting very bad flare ups for all reasons and they all result in very very bad vocal tics where he was shouting non-stop all day and jumping off his seat all day ! So our son's case is slightly different ...we have seen all the top Dr.'s in NY,NJ including Dr.T,Dr.B and now Dr.N in CT.They all feel its PANS although none of his bloodwork show evelated levels of any infection . He is still on omnicef antibiotic for past 3 months now as a preventative. One thing that seem to work for us when he does have a flare up is Magnesium Taurate upto 500mg. Right now after last weeks flare up we re-started Mag Taurate and currently he is around 375mg/day and after 5 days now his vocal and motor tic is down to 40%. One more thing that seem to calm him down when he has severe flare ups is an IV of glutathione and NAC that we get at Dr.N . We are using couple of other supplements prescribed by Dr.N and we are taking it slowly one by one for now.He had to miss school for more than 2 weeks when he had the severe flare up...so hang in there. We have not resorted to any traditional medicines for tics so far and have been advised against it by all doctors and kept it as a last resort. If your son has any current infections going on and his tics are up then his tics will come down when he is treated by the right antibiotic.You could also consider IVIG if it is PANDAS/PANS related if recommended by his docs. Please keep us posted and let me know if you have any questions.There have been many days when I have felt totally dejected and helpless and right now I can only say that we take it day by day and he is back in school past 4 days now ! Best Vik
  17. Hi All After my son's flare up of vocal and motor tics(anxiety triggered) last week I started CVR Magnesium Taurate at 375mg/day and after 5 days there was 60% reduction in his tics and he is now left with 40% tics. Is the magnesium taurate better than just using taurine for his tics ? Can you please tell me which brand of mag taurate/taurine you have used and is it ok to use it long term without side effects? Now His tics come out mainly when he is excited . Is there any way to curb this excitement triggered tics ? Our integrative doctor has prescribed prescription levocarnitine for him at 330mg/3 times a day which I am yet to start as his blood work detected carnitine deficiency . Is this levocarnitine same as the L-carnitine that many of you have used for vocal tics ? Thanks for all your help in advance ! Vik
  18. Hi Everyone My son has had a really bad flare up this past week due to an incident in school that caused his flare up due to anxiety attack.Its flared up so bad this time as he is unable to sit / stand / walk without jumping and he is shouting a word non-stop since one week . We tried everything to bring it down including magnesium taurate upto 500mg , NAC 1800 mg ,Ashwagandha for anxiety, accupuncture , chinese herbal medicine etc but nothing seems to help him. Is it worth going to the neurologist and going the route of prescription drugs to bring it down ? We have been avoiding this route and in the past his ticks seem to come down in 10 days but this time its really bad. Any advice would be greatly appreciated. Thanks Vik
  19. Hi Tracy My son has elevated levels on Anti Tubulin on the cunningham panel tests.He seems to be mildly immuno deficinent according to the doctors along with inflammation related to PANS. We have seen 3 Dr.'s so far in NY and none of them have given us a final diagnosis as they seem to be confused and doing the wait and watch thing on antibiotics !
  20. Ok thank you.I think we will give LDN a shot !
  21. demeter , Thanks for replying to my post and I sent you a pm regarding this program at Rogers. I am willing to explore any avenue to find the right treatment for him...and we have forgotten what "normal" is in our home ! As I said , we are not sure if all these supplements he is taking is helping him or causing him more harm ! If not for some support from this group I would be so lost ! He has not shown positive for any infection so far but again cunningham panel report shows elevated for one band (Anti-Tubulin).He goes normal for a week at the most sometimes and then it all starts again out of nowhere ! I cannot see him suffer like this and after spending on his treatment with no help from insurance , there seems to be no improvement this past year in his condition !
  22. Yes his immune system parameters were tested in June and the Dr. feels there is no need for IVIG right now . Thanks for pointing out the supplements one...I will take a look at it again ...he is taking so many of them and they keep adding to it each time we see the doctor . L- carnitine did not sit well with him and he recently started cortisol support supplement as he was having issues with adrenals....He also got a boil on his knee 2 days ago and its seems to be very itchy and it doesn't look like any insect bite....Not sure if its related to anything thats going on . I am so tired and exhausted trying to find some miracle cure for his condition when there might not be any !
  23. Dasu , mama2alex, Thanks for sharing your insights. Yes he was tested for all the infections you have listed and the Lyme was done via Ignex. igg is for allergies right ? I believe IGG cannot be done in NY state as per the doctor we are seeing. He is anyway off gluten and dairy. He is currently taking omnicef as he allergic to azithromycin. Other than that he is taking a whole bunch of supplements like fish oil , zinc , amino acids , vitamin c , probiotic , nystatin for yeast ...His tics were not that bad when it all started last year post strep infection . It was all manageable until it started getting worse this year since April its almost been constant of many vocal and motor tics and this time the antibiotics are not helping him either. He seems to have tics whether he is sick or not and worse when he is sick and anxiety / fear , ocd along with that too with fatigue !
  24. Hi Everyone We are on the second day of trying out repreeve for our son.I did notice that it brought down on of his tic (sticking his tongue out) on the first day.I just wanted to find out how many days does it take to notice a good change in the condition before I order a month supply ? I am keeping my fingers crossed on this one ! as we have tried so many treatment options already and nothing seems to be helping our son ! Best vIK
  25. Hi All I am back again seeking some answers on this forums...we are so confused and same goes with the doctors we have seen these past few months ! Other than the cunningham panel showing elevation on one antibody all other tests for any sort of viral/bacterial infections are all normal . My son has multiple tics going on with anxiety and OCD issues. He partially responds partially to antibiotics where his symptoms come down a bit but never goes away completely .Doctors also are confused as they do feel he has some sort of autoimmune issues but are really not sure what to treat as he has no current infections. Can it just be that he has TS disorder although no one in our family has this sort of condition ? I really don't want him to take antibiotics if its not helping his condition...Did anyone have a similar condition where all tests are normal except for elevation in the cunningham panel tests and how did you go about treating this ? All the doctors we have seen here Dr.B and Dr.T say he does not need IVIG yet and have just prescribed supplements and antibiotics that he is currently taking.... Please let me know your thoughts if any ...as we feel we are at dead end after spending so much on all the tests and Dr's so far ! Best Vik
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