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vvny

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Everything posted by vvny

  1. Hi Chemar He wakes up in the morning and starts ticcing right away all the way to the night ! Sometimes I hear him in the middle of the night as well. So there is no actual trigger I can think of! Its basically all day with some breaks in between when he is really concentrating on some activity. I have tried every possible thing on him from supplements, accupuncture, diet changes, mouth piece and nothing has drastically helped him so far. Till now his tics were not too bad and we were able to manage until March when the vocal tics kicked in so bad. The only thing I have not tried on him is neurofeedback which I am unable to schedule now due to covid. He is currently on these supplements...Let me know if I am missing anything important. He was generally ok with the below with minimal-moderate tics for last few years until March when it all blew up! Magnesium Taurate 500mg/day, Taurine 500mg/day, Vitamin C1000mg, l-glutamine 500mg, VitaminB6/B12/combination of all B(folate)P5P, DHA, COQ10, Ashwagandha, Quercetin to help with allergies, Multivitamin, Probiotics, NAC, Guanfacine 1.5mg, now on Lcarnitine. I have also tried 5HTP , GABA on and off but always felt it made him worse so did not continue them. Also tried Valerian on and off, Skullcap ... So I have tried lot of supplements, he was on antibiotics for 1+ year as doctors thought it was pandas but he only got strep once when he was 6yrs and never got strep after that. And his tics have been constant since then ...but manageable with few flareups. We manage his diet well, organic, gluten and dairy free. Not sure what else would help him and I am definetly loosing all hope.
  2. Hi Chemar I am going a bit slow on the guanfacine and he is taking about 200mg/day (weighs around 70lbs). The reason is I remember he had loose stools earlier when he had tried it couple of years ago. Its been 3 days now, I cant tell if his vocal tics sound better as he is still screaming all day. We had gone out yesterday for a drive and it was considerably less while we were out all day but again since morning today its back to being bad. Did you notice your son's tics get better before the 2 week while on carnitine ?
  3. Hi Chemar Thanks for the advice and I am going to try the levocarnitine again from today and will update you in a week. His tics are there constantly all day every few seconds. Nothing makes it worse or less. Also wanted to ask does Lecithin and Niacin make a difference since he is not on them ...?
  4. Hi Sheila/Chemar Thanks for your messages. I am at a point where I really dont know what to try on him as there is nothing left to try. None of the meds work on him or have a bad side effect and he refuses to have it so I cut down the guanfacine to 1mg which is not helping. He hates feeling lethargic and drowsy. He tries his best when he can with cbt but he says its too hard. I just got his bloodwork done today for common markers just to see if he has anything going on which we don't suspect as he does not seem sick. Before the lockdown and when he was at regular school his tics were at minimal. It all started after couple of weeks of school beign closed. He shots constantly all day and almost lost his voice. Its never been so bad for us. Chemar, I did try one day of 150mg of levocarnitine(he used to be on this back when his levels were low) but somehow I felt it made him tic and shout more so I did not try more than a day. I am giving him quercetin with b vitamins and C and zinc , magnesium and taurine as per bonnies regimen. The only supplements he is not having as per bonnie's regimen are the niacin and lecithin. Do you think adding these 2 with carnitine one at a time will help him ? I am really broken down and already looking into deep brain stimulation surgery for him as I cant bear to see him suffer this way. We also tried the mouth piece(stent) but since his vocal tics were better past 6 months he did not wear it and now he has outgrown it and our dentist is not open to make him a new one. Any other pointers are greatly appreciated.
  5. Carolyn, This is great information and I was looking into histamine for my son who is 11 and has really bad tics going on with stuffy nose every night. He is already on B6, NAC, Magnesium, zinc and i will be adding in the quercetin. He is suffering a lot with the vocal tics all day and I really dont know what else to do for him. Any pointers on what helped your son with vocal tic flare ups ?
  6. Hi All So since the lockdown started and homeschooling since March , my son's (11yrs) vocal tics have flared up like crazy where he is shouting all day. He was on guanfacine 1mg for tics for 6 months before March and it sort of helped him and we did not see much side effects at 1mg but since his vocal tics are so flared and we didnt want him to loose his voice , the doc asked us to increase it to 2mg at night. Now since we have upped it this past 3 days , his vocal tics still remain the same and he is so lethargic and sleepy barely able to stay up during the day. Has anyone had success using guanfacine for vocal tics without much drowsiness? Will the drowsiness pass with continued using ? One other thing that might cause his vocal tics to flare could be the pollen , dust as he has a blocked nose almsot every night and its not a cold. So I think he could have some allergies and we are treating it with claritin and will add in few more supplements. I am really not sure which route to go anymore as his vocal tics are so flared up and we are already doing supplementss to help him and at this point nothing seems to help him and I am so frustrated seeing him suffer all day.
  7. 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
  8. Hi Any updates on neurofeedback Elise ? I am looking to start this for my son.
  9. 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
  10. 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
  11. 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!
  12. 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.
  13. 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 .
  14. Cary How has the improvement been for your daughter so far ? We are scheduled to see Dr. K today.
  15. 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
  16. 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
  17. ok thanks ....I was wondering if anyone had experience using it to reduce tics or TS due to auto immune issues ?
  18. Excitability has been of our son's main triggers too . Is there any supplement to help with this ?
  19. 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
  20. Hi There I have sent you a message with all details you have asked...please check ur inbox Best Vik
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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 !
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