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Everything posted by Kimflow

  1. Airial95, thank you for the info. on sawtooth pattern. Our last rx for prescriptions were provided by Dr L, pandas doc. Three weeks of Clindamycin and then followed with 2 weeks of rifampin. Since the IVIG approval is still waiting on approval, then I will have to call in to find out what to do after the antibiotics are up after rifampin. I really don't want to be off antibiotics as I know how it is ON antibiotics. I will ask for 30 more days of some type of antibiotic. She wasn't totally thrilled with the Augmentin due to the clav. acid...and maybe because my son is small although it doe
  2. LLM, I just read your post above MOM24. yes, I am seriously considering the biofilm theory. I am going to check out your link. I have previously done Usman's biofilm protocol for the gut bugs...it seemed to help....but honestly what helped gut status the most was immunomodulator. This was all before PANDAS. The inflammation that has come requires additional immunomodulation.........maybe it is time to try LDN. I am just not sure how this all fits in with the IVIG ang tonsillectomy picture. I previously has not tried becasue there is a period of adjustment that some kids have with th
  3. yep, I am pretty sure if I swabbed him right now, he would have strep. I will ask for this when I go to the Lyme doctor tomorrow. I am certain though that either the zithromycin 250 mg a day is immunomodulating part of the PANDASresponse to the nondead strep and/or the antibiotic is still killing some strep, just not all as it may have been in the beginning. Who knows? Maybe could be that some strep could be coming out of biofilm for some reason and that is why we see downturn always at day 7. It is just one more burning question now to replace my prior burning question I always had.
  4. Mom 24, So strep on clindamycin....did he tell you his throat was sore???? We have been through zpack, amoxicillin, keflex, augmentin, and all have failed at day 7...strep/PANDA symptoms came back. Now have been on Clindamycin 10 days as well as immunomod. zithromax 250 mg. At day 7 again, the strep symptoms came back. PANDAS symptoms are flaring. I haven't had him swabbed because what else can we do? There aren't many other stronger antibiotics. There must be a reason why the strep continues to come back WHILE ON antibiotics that initially worked but then fail. We are
  5. Has anyone used Manuka honey and felt it helped even a little to address strep? I imagine difficult to balance to not incrase yeast. I am off to google this. Thanks.
  6. I read on a PANDAS blog...cannot remember which one....that St. John's wort is contraidicated for kids with PANDAS. What are your thoughts? Does everyone feel this way? What do you all use then besides 5htp that is natural for anxiety? Thanks.
  7. Yes, thank you for all of your input. I will still drive to see the LLMD this Wednesday. It is a long drive but I had pretty much decided I have to go. The LLMD is also familiar with PANDAS so it will be good to get his input on that too. maybe he will look at our antibiotic history, current regimen from the PANDAS doc. and say we are covering Lyme too.....wishful thinking, I know. I have thought of doing the tonsillectomy first but Dr. L (our PANDAS doc) felt it would be optimal to get the IVIG and then while it is on board, get the tonsillectomy done....I guess within the 21 day hal
  8. LLM, I know that the Low Oxalate folks use arginine to help with the urinary symptoms associated with high oxalates/urinary irritation/urgency. What are your thoughts on this? My son has PANDAS... exacerbation with strep throat that was asymptomatic except for PANDAS symptoms. He is about 8 weeks into the diagnosis and now we have slight urinary dribbling. COnfusing as many of the other symtpoms are atleast easing up....The horrible syndenhams chorea has settled, the other symptoms have settled but now we developed this slight urinary dribbling. I know it could be worse so I am not
  9. Hi, Our son recently diagnosed with PANDAS, Syndenham's chorea will be getting IVIG and tonsillectomy all within 3 weeks. He has positive bands 41 and 66. Our PANDAS doc. not too worried about that. But I heard at a support group, one father say that he did not want to do IVIG without treating suspected Lyme as it can cause horrible Herx after IVIG. I have a LLMD appt. this Wed. ...should I keep it adn see hwat he thinks about the two bands? My son has been on amox, keflex, augmentin, and now on clindamycin, zithromax. Would that be enough to have taken down some Lyme that could
  10. Sorry he is sick...I assume he is already on antibiotics for the PANDAS. Could that be why he cultures negative for strep? I don't know. I am just now understanding how every sickness will be related to the PANDAS and the fear of exacerbation in one way or another. Lucky that you have Dr. B. I hope you get some answers from others in the area. Wish that he is feeling better soon. I think I am going to carry a PANDAS file of history/important research articles, etc. in my car...just in case.
  11. Hi, I posted update recently on my son. Doing this post to ask questions about first IVIG infusion. I believe it will be over 2 days in office of Dr. L. I hope that they infuse it slowly over 8 hours as my son is so sensitive. I know to keep him hydrated, to ask for antinausea meds just in case. They order sheet says Tylenol but I don't do tylenol due to glutathione depletion. I plan to ask if we can just use Ibuprofen to ward off headache/treat fever, etc. I hope to just premedicate with it ahead of time. She also mentioned sometimes they premedicate with Benadryl maybe to jus
  12. For tonsillectomy??? Any hints on what to make sure to get done. IV antibiotics during surgery? We are currently on Clindamycin. Then to go to Rifampin. Dr. L also said try to do when IVIG on board. I read about 21 days half life. What do I do first? The IVIG is still waiting on insurance approval. It could be 7 more days. I see ENT tomorrow. Or should I just get the tonsillectomy done and let the IVIG clean up. I think the best thing is get IVIG, then tonsillectomy withint 14 days of it. Also, I am going to ask for deep nasal swab culture and sensitivity to rule o
  13. Hi, Wanted to update you all on my son. We got in to see Dr. L. She had cancellation and we live close. We are 8-10 weeks into this journey. Recap: marked escalation in anxiety/new OCD/verbal triggers of anxiety..........I read about PANDAS......took him to Dr. and said swab him.....positive rapid. zpack, amoxicillin, keflex failures while still on the antibiotics......augmentin was next ....5 days worth but then we got into see Dr. L. Her plan for our son based on history: Clindamycin followed by Rifampin IVIG asap Tonsillectomy while IVIG on board she also diagnosed hi
  14. Julia Faith, I tried to PM you but it says member can't accept new messages. Could you pm me with your email address? Thanks ,Kim Sorry to butt in this thread. Kim
  15. Kathryn, I have only known we have been on the PANDAS train for 5 weeks now...but looking back, I know we have been riding it longer than that. I think that the VSL3/Strep discussion if a heated debate. I can only share with you this: In Feb. my son was struggling. I could not figure out why all the anxiety and trigger words that he would usually just have one of were now suddenly ALL TRIGGERS ALL THE TIME plus even more. A few weeks before, I had pulled VSL 3 because I thought....maybe he doesn't need it and it is very expensive. When I saw his drop in language in Feb, I s
  16. Linda, What I have learned so far is that the Zithromax is better at immunomodulating PANDAS and not as good as the others (amox, augm, keflex, etc) for killing the strep. I certainly found that out when they prescribed a zpack for his strep throat and it did very little, if not NOTHING. Kim
  17. Linda, I too have seen that cycle.....day 7 everything is pretty good and then Day 8, it seems to start to fall apart. For us, we switched to different antibiotic twice to have it happen with both antibiotics. Next, we went on Augmentin and there was no honeymood period. It has been suggested that the Augmentin was stronger the strep that is it killing is releasing toxins that might mimic original strep infection. I also read another discussion on here where someone said doctors will sometimes pulse dose to avoid the huge toxin release/upset child. I also wonder now if it took t
  18. Bigmighty and LLM, Thanks to both of you for your replies. I guess I will have to go the route of stay on Augmentin and pray that the bad is just something I have to push through...meaning it is actually working. I can't imagine how it couldn't be. I am also going to see if I can find some sort of reference that might confirm that when the strep dies, it might release the toxins or maybe even enough strep particles to reactivate the strep symptoms. LLM, we tried many things over the years to remediate the autism. My son was always so sensitive to everything that was supposed to
  19. Hi everyone, Trying to figure out the puzzle......would any of you share your experiences of either honeymoon periods with initial start of antibiotics or the opposite.....actual worsening of symptoms at the start of antibiotics. We have had both and although I tried to go out and pull weeds to distract myself from it, I can't stop thinking about what is going on. We had positive responses to both Amoxicillin and Keflex but both stopped working around day 7 and symptoms returned. We finally have switched to Augmentin this time...875 mg po split in two doses. He is on Day 3 and he
  20. Fighting Mom, I have not been on this path as long as you but one thing I do know in my 5 short weeks is the one thing that has really helped us has been the zithromax 250 mg daily. It is a sure fire immunomudulator for my son. The doctor said not to think of tapering until all of the PANDAS symptoms are gone for 4 weeks. I have a feeling we'll be on it a good while. Also, interesting that you seem to be seeing a 2 week pattern and I have seen a 7 day pattern. The new antibotic does miracles for 7 days and then seems to act as if it is not working anymore...even while we are still
  21. Nancy, I have decided that if Augmentin isn't going to take down the returning strep symptoms, not much will. Might be a case of where you just have to stay the course now. Another part of the puzzle. I will keep him on the Augmentin paying special attention to making sure I am faithful on keeping probitiotics in him. Next, I am going to try and address the elevated IgE and histamine. Obviously some of the "symptoms" (which acutally are behaviors since there was no fever)are related to the strep....but how much might be related to the elevated histamine. Also, another part of
  22. Thanks guys. Good to know, I made the right choice. I split the dose. I have 30 days of it and a refill....I just hope I can get him past day 7 of this Augmentin without any return of symptoms. Would any of you have any idea why we have been through two antibiotics, Amoxicillin and then Keflex and with both, they worked for 7 days and then day 8, while STILL TAKING THE DOSES, I would start to see the original symptoms creeping back in. Then we switch to new antibiotic. So we have done zpack 5 days. Didn't address strep at all. Then Amoxicillin, stopped working Day 8. Then Kefl
  23. PS Mayzoo... I have asked two different doctors along this path of strep throat cultures...to please order sensitivity. Both have told me that they don't do drug sensitivities on throat cultures. Could they not know? How else can I ask for it next time...I hope there isn't a next time, come to think of it. :-) Kim
  24. Mayzoo, Thanks for sharing that message of hope. It is much appreciated. Kim
  25. One practitioner ordered Augmentin 875 once a day. Another practitioner said she usually doses it 450 mg twice a day. She worries about my son's GI discomfort. Which way to go?
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