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Everything posted by nitshel

  1. Thanks pr40 - Are you giving supplements to boost the immune system? If so, which ones have you found more effective? The improvement in our son is so gradual it could be mistaken for waxing/waning but we are hopeful that these are real gains.... Also, we're considering giving NAC (there are several threads on this forum that talk about it). Have you considered this?
  2. Thanks pr40 - Have you (or anyone in a similar situation) considered IVIG? Has / Could that help with the automimmune reaction? When does one consider IVIG or Plasma.ph in the scheme of things? Thanks!
  3. Update to our situation. 1. Moleculara results say "PANDAS Likely". 2. Advanced Labs prelim results for Lyme are negative. Tests for co-infections are negative 3. Coxsackie was positive but we have almost eliminated it 4. We eliminated Candida a while ago with Diflucan 5. Strep titers have come back consistently low - in some cases too low in Dr. T's opinion AbX seems to be helping (albeit very slowly) - its been 7 days so far on Augmentin (1 pill AM) and Azithromycin (1 pill PM) Does anyone know what could be going on? If son is PANDAS Likely - does that not mean there is an infection - if so what other infection can/should we check for? Or is there an autoimmunity issue? Methylation issue? Sorry for all the questions - still trying to understand what could be happening...
  4. Hi We are battling a sons tics - getting all sorts of tests done - looking at Lyme, coxsackie, myco etc. While we will do everything in our power, I just need some assurance that this has worked for some people - that there are others who have put their children through all kinds of ABX medications, anti vitals etc and achieved success. I realize only folks who are still struggling stay on in the forums but I am hoping you have heard of success and that there are some of you who have achieved it. Just need to hear of some happy endings!
  5. OK - gotta get this off my chest. Our Moleculara results are back - they came in 10 days ago. Dr. L was supposed to review them with us last Friday (a week after results were in). On Friday morning we are told she is not well - and then in the same breath - that she is leaving for a vacation the next day until July 10 - after which, at some point, her office will reschedule our appointment. During this time we will not be given the results (since the doc has not reviewed them). I almost lost it!! I have a child who has been sick for 7 months - fighting what seems to be a ghost and this is the treatment we get. I found this practice to be highly unprofessional - and indeed this latest behavior borders on the immoral. We are not going back.....not sure how she is so highly regarded... We are now trying to get the results to Dr. T
  6. Thanks Cobygurl - can you tell us what supplements you are using for Detox and immune system boost? Is there such a thing as herxing with Coxsackie?
  7. So the tests came back. Son has 1:1600 titer of Coxsackie virus. He is midway through the 10 day treatment (as is DH - high titers as well) and we will now begin to wean son off of Risperdal to see if the tics are still there. Hoping and praying that they are gone.....if not - we are back to square one.....
  8. Ok, just providing an update. Dr. T has ordered a slew of tests. In the meantime he asked us to give our son 800 mg of Ibuprofen (400mg 2X day) per day. He took us through how this might benefit but I didn't quite follow the steps - apparently it disrupts a process (cytokines involved?) that impacts dopamine and is a "poor man's Cunnigham test". Does anyone know more details about this? If it does take effect, how many days until we see a change? Thanks!
  9. OK - so we are driving up to NJ to see Dr. T since I've heard good things about him - l really hope he can figure out what the heck is wrong with our son. So far we've come up empty (though Lyme is a slim possibility and Moleculara has not yet sent us results). We will also be seeing a LLMD Nurse Practitioner next week in the DC area for getting an opinion on Lyme. My biggest fear is that we will be given a regimen of Antibiotics (for Lyme and or PANDAS infection) which (like last time) will push the tics up to an even higher permanent "new normal" and we will need to boost the dose of the psych drugs to counter the tics - which I hate doing....this is the most insidious disease in existence....
  10. Hello PowPow,I think it was me who asked for a referral to a good doc in NoVA - can you please share? I tried PMing you but it seems your account cannot receive any new messages - not sure why Many thanks - and hope things are going well...
  11. Thanks Heather - we will see if we can get on her calendar. We are waiting on the Moleculara Lab results - which take 4-6 weeks unfortunately. In the meantime it is so frustrating to be losing the fight against this insidious disease. Teh antibiotics we gave our son have pushed the tics to a "new normal" - much higher than what he had before. We've had to greatly increase the dose of psychiatric drugs which is something we detest doing - just trying to get through the next dew weeks of school until summer when we can begin a blitz against whatever underlying problem exists
  12. So we called up Dr J in CT for treating potential Lyme (probably gestational) - his first open appointment is 19 Sept - I dont think we can wait that long, the way sons' symptoms are progressing. Does anyone have any other recommendations on the East Coast for LLMD's? In the DC area there are a few but none of them as successful as Dr. J. Advice much appreciated.
  13. @SF Mom - can you help me understand what "Cam Kinase II" test is? Is this part of the Moleculara Panel? @T.Mom - I realized I had not answered your question on what symptoms preceded the sudden onset of the vocal tics. What we saw was rather subtle - a lot of allergy-like symptoms (Son never had Fall allergies) - itchy, watering eyes, sore throat and symptoms of sinusutis (in fact an allergist we took him to a week later, actually diagnosed him with sinusitis). Allergist actually prescribed PET scan but we were put off by the radiation dosage exposure. Could these symptoms be indicative of PANS/PANDAS?
  14. Thanks 3boysMom - we will get son checked out - is that test through a normal lab (like Lab Corp) or a speialized lab like Igenex?
  15. Also wanted to ask if anyone has had experience with Dr. Stack (Vienna, VA) and his mouth appliance? I do see some posts on it over the past couple years. It seems to have helped some and not others - but we are desperate....
  16. Thanks All. @SFMom - At this point his tics are better but still not enough to go to school / social activities, despite the increased Risperdal + Zoloft.I may need to get myself checked - especially for Lyme - I'm guessing Igenix.... @Dedee - many thanks for your advice. What was keeping us away from Topamax was that we were told (and had read) that it caused people to become "slow" - decrease in intelligence and such - I guess thats at high doses, as you say.... @ PowPow - how can I e-mail you offline for the doctor's name? Many thanks all - you have been so helpful and supportive.....we need all the hope we can muster - we seem to be fighting a ghost....no test has come back positive thus far, so we are struggling to get to the bottom of this....
  17. Hi SF Mom - thanks so much for great insights and advice. I think you may be onto something - when we treated our son with ABX combo, Clondomycin and Rifampcin, we saw wild escalation in tics which we are trying to manage now with increased dosage of Risperdal even though we have discontinued ABX. We plan to do full court press against Lyme over the summer vacation. How did you determine that it was geatational? Do I need to get myself tested also?
  18. Thanks you all. We are waiting for the Moleculara tests to come through. If those come back "unlikely" then we will pursue an LLMD - Dr. J in CT has been recommended to us. @Queenmother - We did see an alternative medicine dr. (Dr. V in Md) but are not happy with him - he did not prescribe GABA, 5-HTP, sAM-E - some of the common supplements that seem to have helped other folks on this forum. All he did was prescribe a large number of Vitamins and Minerals - these really have not helped much, despite months of use. Does someone know of good alternative approach doctors on the East Coast? We really need a good "detective doctor" to crack this case - a lot of doctors have tried and failed (so far)...Queenmother - Also loved your analogy of walking in a hurricane blindfolded!! Thoughts and ideas from everyone much appreciated...
  19. Posting an update. Lyme Co-infection (from Lab Corp) all came back negative (except Babesia which is still pending) Vocal tics are still so bad. We increased Risperdal a couple days ago to 1 mg - no effect. Doc has asked to increase Zoloft from 37.5 mg to 50 mg. Really scared now....I hate increasing these drug doses - but hate seeing my son in this state even more.... The only suspicion we have now is Lyme (based on Igenex test). Moleculara test is pending as well. If these tests all come back negative I dont know what we're going to do - what else could be causing this - I so wish we could "pin" down the cause of this - as so many have done on this forum. Son has not been able to go out anywhere - poor thing is bored and helpless and drugged - and its breaking our hearts. > How long does it take Abx to clear from his system - we stopped Abx in the hope that he would "return" to baseline but the tics have not gone down...anyone has advice? Thanks and Happy Mothers Day to all...
  20. Hi T.mom - thanks for your kind words....this is taking a toll on the entire family - we're barely hanging on.......such a nightmare.... We are considering MOLECULARA and Cunningham panel for ruling out/in PANDAS. We just did bloodwork to check for Lyme co-infections - results back in a few days.... Yes son did have regular ear infections - there were a couple just before the Nov manifestation. He has not had an ear infection since we out him on gluten-free diet and a range of vitamins and supplements.... I'm just waiting for a positive result from these tests- any positive result - so I can at least understand what is going on inside my son!!! And give this vile thing a name...... We will stop abx tomorrow and see if tics drop down over following days - that would indicate it is herx - and that would be at least some clarity (i.e. not TS)
  21. @Peglem - this was a question that we also asked ourselves but we have been told by our Doc that the current dose (1 mg) is too low and unlikely to cause tardive - as far for the fact that risperdal may be the cause of the tics, that's just a chance we're taking at the moment since it seems to help with the vocal tic. All - based on feedback, we've decided that now that is been 9 days of antibiotics and exacerbated tics, we'd like to check if this is herx by stopping ABX and seeing what happens. If the tics decrease then there's a good chance that this was a herx reaction and if not, then we 'll resume the abx regime and figure something else. Any advice on how long after we stop ABX should we see a decrease in the herx reaction? Any thoughts or advice on this plan. In the meantime,we are doing some blood work tomorrow that will hopefully tell us if our son had PANDA related (moleculara)/lime co- infection(labcorp). Thanks to,everyone for their insights and good counsel.
  22. Thanks LLM - Yes she mentioned Dr. J in CT as her choice. Many thanks also for the info on Lyme. We have begun using Glutathione cream to help with detox and will investigate the charcoal that Hopeny pointed out. Also ordered Bonnie's TS control to see if they can help based on positive reviews on this Board. Tomorrow I plan to get Blood work done for co-infections and for the MOLECULARA - I'll post results as soon as I have them. Challenge will be going into the lab with son's very loud vocal tics / coprolalia....will get through it. In the meantime the tics are so bad and son's behavior is difficult to deal with - fills us with so much anxiety.....seems like everything is falling apart....I just wish I knew what it was we were dealing with - that is the worst part - after so many months and tests, it still feels like a mystery. Thanks to everyone for their thoughts...
  23. Posting our latest update. Doc L has prescribed the co-infections tests (Bartonella et al). She admistted that giving the steriods was probably "a bad idea" - yeah, no kidding. Tics are very bad now - loud yelps like he had in the begiining of this nightmare, with periods of coprolalia. he has been off the Prednisone since 4 days - yes we did quit Prednisone cold turkey but its a bit late to do anything about that now- right? We tried giving a slightly higher dose of Risperdal as Doc advised - no effect. We do NOT want to increase dose more of we can help it Doc has now switched son to Augentin 500 mg twice a day (discontinued the Clonidycin and Rifamcin) - she says this should help in the eventuality that it might be LYME. For Lyme she has suggested a doctor in Connecticut. We live in Wash DC area - does anyone know of any LLMDs here? Doc L said she trusts the doctor in Connecticut more thn any others in our area.... > If this really is a die-off, how long cn we expect it to last? Its already been a week - should we not expect to see at least some improvement by now? > Doc also suggested we look at trying Keppra or Topamax to counter the increased tics - and she said these are "safer" than Risperdal. Has anyone tried these drugs? > Could it be that the Abx are impacting the immune system somehow which in turn is exacerbating the tics (i.e. there is no underlying infectious agent - just body "out of whack" somehow)? > Doc had advised we try Dr. Cunningham's panel to test whether or not son has TS (testing for antibodies) - have folks found success with Moleculara? Here are the results from Page 1 of the IGenex tests- igm (page 2 - igg is posted in earlier posts) 18 KdA -- **23-25 kDa -- 28 kDa -- 30 kDa -- **31 kDa -- ** 34 kDa -- ** 39 kDa -- **41 kDa IND 45 kDa -- 58 kDa ++ 66 kDa -- ** 83-93 kDa -- Onlt band 41 showed up as IND and band 58 as ++ Our NIGHTMARE is back ...and its getting worse by the day.....thoughts and advice appreciated......
  24. Thanks all. We did run titers last Dec but they came back "negative" (no numbers provided) - maybe we should run them again? Also it looks like we might be dealing with "stealth" Lyme (based on some advice posted here). Plus it loks like we need to test for co-infections (bartonella, babesia, ehrlichia, mycoplasma). Doctor did not run any tests - she looked at the past ones we did and then gave us the Abx + Prednisone regimen - am pretty mad at her - she gave us no potential side effects or any warnings....was laid back and disinterested all through the appointment. We have an emergency follow-up with the Doctor (she came highly recommended - in fact she is mentioned on several threads in these forums) - will post what she says. Over past 24 hours the facial tics are down but vocal tics are back (loud "yelps")- these are so much more disruptive....I hate to do this but we may have to up the Risperdal so he can go to school and play with friends. How does one determine if/when what your kid has is caused by an underlying infection (in which case Abx will help) - or is simply a bad genetic card in the deck (TS) - in which case Abx will simply not work? Is this determination made after trying a number of drugs over an extended period, ruling out all other possibilities? Or is there an easier, more conclusive way of doing this? Thanks once again for all your suggestions! God Bless!
  25. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet and diflucan and probiotics Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned.How long till Prednisone is flushed out of my son's system? And will his tics subside (or are they now at a "new normal")? Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics?I've read that TS is usually inherited and there is no neurological conditions that exist in our family - or even the extended family...so if this is TS then it is extremely strange...any thoughts on this? I forgot to add that we did Lyme testing through IGeneX. Here is what we got... IGenex TES : NEGATIVE CDC / NYS TEST: NEGATIVE 18 KdA -- **23-25 kDa -- 28 kDa -- 30 kDa -- **31 kDa IND ** 34 kDa -- ** 39 kDa IND **41 kDa ++ 45 kDa -- 58 kDa + 66 kDa -- ** 83-93 kDa -- Does this indicate Lyme? Is it possible that his tics are also worse because of die-off (herx) reaction? Your help and advice is much appreciated.
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