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vvny

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Everything posted by vvny

  1. 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 !
  2. Ok thank you.I think we will give LDN a shot !
  3. 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 !
  4. 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 !
  5. 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 !
  6. 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
  7. 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
  8. Thanks all for the replies .I will look into these and hopefully one of them will work for my son !
  9. Hi All My son is back on antibiotics for his PANS and there seems to be an extreme buildup on his tongue in just 3 days ! He is on nystatin and I am not sure if its doing anything . I just started Kyolic candida cleanse and digestion which is 600mg/cap today and I plan to give him 2 caps in addition to the nystatin. Is it good to mix up nystatin with natural remedies for yeast ? Is there anything else that works better while kids are on antibiotics for long term to control the yeast build up.Please help ! At this point I feel we are never without an issue ! One leads to another ! Thanks in advance Vik
  10. Hi All I am back again with a question for the experts ! After rigorous testing done on my son for the past month for his tics , OCD and behavioral issues that keep flaring up from time to time...all the blood work comes back negative for any of the infections ! Only his cunningham panel shows elevation on one antibody. Dr.T has changed the antibiotic from omnicef to clindamycin as my son cannot have any from the zithromax family due to serum sickness. Does anyone have any feedback on clindamycin for treating any possible mycoplasma or the long term use of it in PANS case ? I have read online that it can be harsh on the GI tract and my son is very sensitive so we are nervous to switch him from omnicef which has brought down his tics a bit but symptoms still persist ! Please share your thoughts ! Thanks in advance Vik
  11. Hi Shiela I just heard from them yesterday late evening and they said they will ship out a sample to me . Thanks for helping out ! We are seeing Dr.T again today ! Keeping my fingers crossed and hope something works out for my son !
  12. **PLEASE NOTE that this product has been discontinued since 2017 so the thread has been closed to avoid any confusion** Hi All I have been trying to reach Matertechnologies to send me a sample for the repreeve patch...but I am unable to get through to them either via email or phone.Anyone order the sample recently ? Are they still in business ? Please let me know how I can order a sample as my son has an extreme flare up of tics and I am willing to try anything at this point as nothing seems to be working for us ! Thanks !
  13. Ok that was useful .Thank you so much, as we are in the same boat.We are unable to identify the exact reason behind our son's inflammation!
  14. Thanks for sharing your experience with LDN. Do you think taking her off LDN caused the anxiety to worsen ? Does it cause a dependency once you start it ? I am afraid of any side effects ....did you notice any ? My son mainly has chronic vocal and motor tics along with OCD and anxiety. This cunningham panel shows elevated antibodies on one count ....He has not got full relief from antibiotics so far or with supplements.Maybe thats why he has prescribed LDN..
  15. Hi Everyone Our doctor has prescribed Low Dose Naltrexone for our son who has severe tics and OCD from possibly PANS although they haven't been able to identify the virus causing it. Has anyone had success with LDN ? It seems to be used for autoimmue and other conditions according to this website http://www.lowdosenaltrexone.org/ We are very nervous to try it and wanted to ask the expert opinion of members on this group for your opinion as well... Thanks in advance ! Vik
  16. Please share update for your case as we are also seeing Dr.T soon. My son also has sudden flare up of OCD and Tics out of nowhere ! His bloodwork also suggests PANS and out of desperation I started him on antibiotic omnicef and ib brufen before we see Dr.T. He seems 20% better.Maybe you can ask Dr.T for this antibiotic as my son is allergic to azithromycin and he did not do well on augmentin too.
  17. Hi Everyone My son who is 7yr has been having this complex tic since April which has still not gone away ! He was doing jumping jacks initially and that went away and now he takes few steps backwards and jumps when he walks.I am not sure if this is OCD or a tic ? I have tried natural calm and it does not work.He is taking supplements along with GFCF diet . He also has bad vocal tics where he repeats words , sentences when he speaks. And there is no one with TS in our family. We are still confirming diagnosis for PANS but in the meantime if there is anything to help these complex tics would be great ! Just wanted to find out if any natural remedies worked for anyone with such complex tics ? Or is it worth considering the traditional medicine via our neurologist ? Thanks for all your valuable replies in advance ! I just hope to give him some relief before school starts.
  18. My son shows elevated level on the Anti-Tubulin titre and normal range for all the rest on the cunningham panel. Do you know what that means ? Is it indication of PAN's ? Also I am so confused as I was under the assumption that for PANDAS/PANS the flare ups occur when the person gets sick and you treat them with antibiotics and then the flare up goes away until the next time they get sick.But seems like PANDAS/PANS kids end up staying on antibiotics even if they are well as they seem to have symptoms coming back ? My son had only one case of strep last year and never got that sick for this past year just one or two viral colds and no fever .But he seems to have tics even though he was well on and off....and that is what confuses me ? Right now the flare up of tics and behavioral issues started during the spring break when we came back from Mexico.He was fine for 3 months with no symptoms prior to that.And this recent flare up is still going on and he has shown no outward symptoms of being sick even though we ended up treating him with antibiotics for 7weeks that resulted in partial relief from tics but they never really went away.And when I stopped his antibiotics after school ended his tics are back to where he was prior to starting them.But again he is not showing any signs of illness....this is so confusing ?
  19. Hi GMT11 Yes I do think Dr.T mentioned he was low on something (not enough antibodies ?) which I did not understand . How was your son treated for this ?
  20. Yes my son had this for couple of days and he still has this issue when his tics flare up.Once we rushed him to the emergency room but everything was normal. Its just something that comes with PANDAS/PANS. It should subside on its own at least it did for my son.
  21. Hi Everyone ! I just wanted to post an update on my 7yr old son's case ....I had posted on this forum a month ago and I have been busy this summer trying to solve or diagnose my son ! After having a year of tic flare ups and OCD and fear/anxiety issues and treating him on abx for 7weeks last year and handling his case only with supplements and homeopathy with mixed results we completed 1st grade ! We finally decided to see a PANDAS/PANS doctor and do all the necessary blood work required for his case .We did the Cunningham panel tests first which showed elevated on one of the bands ~4000(1000 is cut off) . Rest were all on the cut off mark .We saw Dr.B in upstate NY and Dr.T in NJ.They both ran lots of blood work for my son and most of the tests came back negative for any infections (lyme and others....).So now they feel he does seem to have PANS symptoms but are not able to identify what is causing the inflammation. They are running more blood work now for thyroid , genetic tests ! We have seen our son have severe flare ups of tics / ocd / anxiety in the meantime in summer even without showing any outwardly symptoms of being ill or any fever ! We started ib brufen , abx and it partially brought down his tics .Took him off antibiotics in one month and now just using some supplements like curcumin , magnesium , immune boosting and other natural antivirals prescribed by Dr.B till the rest of the blood work come back. Both the doctors feel that he may not need IVIG at this point ....maybe identifying the right antibiotic to treat what is causing this inflammation. We are feeling so hopeless at this point after spending so much money on the tests and doctors and still not able to identify the cause and treatment option for our son.He still has extreme tics going on. Nothing seems to help him much ....I am so worried how he will be able to handle once school re-opens .I have become a nervous mess myself going through all this in summer ! Any pointers on what our next options should be ? Is the cunningham report conclusive of PANDAS/PANS (high on one of the bands) ? Thanks VVNY
  22. Dear Nancy Thank you so much for taking the time to read my son's case and reply ! I feel better now after hearing good things about Dr.Bock . We hope he will lead us in the right direction after trying so many things this past year and nothing seems to help him that much. I will surely keep everyone posted on the updates and hope to share some information as well . I only wanted some reference for any homeopathic doctors who might help with PANDAS? Thank you again. Vvny
  23. Hi All We have a 8yr old son who possibly has PANDAS/PANS/TS...main symptoms are vocal/motor tics with anxiety/fear and flare ups after any illness now.He had one positive strep last year and was treated for 2 months on antibiotics for tics flare up post strep.Since then he has had 3-4 sore throat but not tested positive for strep or mycoplasma. He again has an extreme flare up of tics this time and is again on antibiotics past 3 weeks now.His tics have gone down to sixty percent . Is there any good doctor who does a complete work up to find out the exact cause of my son's triggers ? We did make an appointment to see Dr.B in Rhinebeck and we do believe he does integrative care. Has anyone tried homeopathy or any other treatments with success for PANDAS/PANS ? We are looking to get him off antibiotics and just manage his symptoms / flare ups with supplements and holistic care. Please ...any advice is greatly appreciated as I am so overwhelmed by all the information and I just want the right direction. We have tried diet elimination , magnesium supplements , not much help with both. Hope to get some help from all of you experts ! Thanks in advance vvny
  24. Hi Everyone I have recently come across this forum and I have found so much information on PANDAS/PANS/TS. But I am clueless where to start.We live in NY and have a 7yr old son who possibly has PANDAS now PANS and maybe TS ? He always had one off tics as a kid but they all got worse after a strep infection last year in FEB.Since then he has always had tics , flare up of tics and anxiety and more tics but only one strep since last year .His tics are better when he is on antibiotics which we really don't want to give him anymore ! He is on Gluten free diet and mostly dairy free . He has no food allergies as he has tested negative for gluten , dairy and all other foods. His blood work always comes back normal for strep and mycoplasma. But he has tics and other anxiety and behavior issues so we are confused. We are trying homeopathy since last year and we have not seen any good results .He is taking high doses of omega3 and other supplements and magnesium and those have helped him to some extent but not much during flare ups.Even the antibiotics don't take away his tics completely.He had good 3 months of tic free before this current major flare up since past month ! We finally made an appointment to see Dr.Bock in Rhinebeck,NY.Any success with him ? Or is there an alternate Dr. who could help us better who would do complete blood work , gut eval etc needed to go to the root cause of his issues ? Any recommendations for a good homeopathic doctor is also greatly appreciated . I know many of you have had great success with alternative treatments for PANDAS/PANS/TS and if there is any particular Doctor who practices alternate medicine or homeopathy who has had success with such cases please please let me know.There are so many names out there , so many treatment options ,so many tests etc to be done and we are clueless as to where to begin and we have been trying few things here and there but nothing with great results where we know what triggers his tics and how to control them ! We are willing to go out of state if needed.We cannot see him suffer so much daily and we feel so helpless ! Thanks for all your replies in advance. Best Vvny
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