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Everything posted by Sirena

  1. What about alternating ibuprophen and tylenol and dropoing the aleve--for a trial? Also, if Aleve helps some, is it possible to safely raise the dose a bit more to see if you get better coverage?
  2. Yes, we had anorexia along with rage and a host of other neurological symptoms (anxiety, liability, intrusive thoughts, minor motor tics, etc.). In hindsight, I wish I had plunked down the $ for Igenix testing and Moleculera Cunningham testing way earlier because after a year of PANDAS treatment with only marginal gains, we finally did them recently and found that he has an active Babesia duncani infection (tick bourne) and most probably has Borellia too (based on species specific indeterminate bands on Western Blots). He was also significantly elevated autoantibodies and CamKinase II on the Cunningham panel. So he has BOTH Lyme&Co-infecctions AND PANDAS. We have to get these infections dealt with before we are going to be able to calm the infections down... Best of luck to you. Eventually I found that if I just put food that I knew he liked on a plate in front of him without asking him about it, he would eat/pick at it, but at least he would eat. If I asked him what he would like or gave him choices, he would shut down or just say he wasn't hungry. Good luck, its a tough road, but you will find the answers and help you need.
  3. Can anyone relate? Last night ds7 was having a meltdown (not good to be 45min late on ibuprofen dose) and as he lay thrashing crying and screaming on the floor he yelled at me "I'm a zombie! I'm a zombie! I'm going to eat the flesh off your bones!!!" What?!? Craziness!!! How did he come up with this stuff? We worked him through it...ibuprofen kicked in... "Good night Mom; I love you." as sweet and genuine as can be...
  4. And have you been using any probiotics or antioxidants?
  5. 90% back--that's wonderful! What is she still struggling with? Is there a difference on/off ibuprophen? Are her inflammatory markers resolved?
  6. Saw llmd today for first appt. Starting mepron for Babesia duncani and continuing clindamycin. Kiddo (DS7) had some heart symptoms on azith so avoiding for now. Adding glutathione and pc for detox per llmd recommendation. More labs being done to revisit Borrelia and check inflammatory markers. Likely that there is underlying Borrelia and maybe Bart too. So any advice? Im wondering if this is going to hit him hard...Also expecting Cunningham panel results tomorrow... Are we having fun yet??!!
  7. https://www.amazon.com/gp/aw/d/1849057443/ref=sxts1?ie=UTF8&qid=1473384738&sr=1π=AC_SX236_SY340_FMwebp_QL65#  Jamie Candelaria Greene PANS, CANS, and Automobiles: A Comprehensive Reference Guide for Helping Students with PANDAS and PANS ISBN-13: 978-1506901879, ISBN-10: 1506901875 5.0 out of 5 stars (6)  PANDAS and PANS in School Settings: A Handbook for Educators P. Rice Doran Sorry Dasu, I'm having tech issues with adding the links. Sirena 
  8. Hi all, I bought, read, and then bought more of the two new books that were ju a thought published on pandas/pans and school. They are both excellent. They've achieve have their own style and lots of content. I bought them on amazon and got copies for kiddos teachers this year...
  9. Dear sand9417, Here's my 2 cents...the bulls eye rash history begs maybe the clue. Coinfections are VERY common and one of them, Babesia, is a malaria like protozoa that is reported to reduce the normal immune response. It is treated with antimalarials and abx. They can also form cysts and go dormant and then take advantage of times when the body is stressed to cause further havoc. So ds could have been fighting infection, holding it at bay and then system gets overloaded and wham - it's flare time. My advice, ask ped to run igenix full panels for Lyme and confections. If the turn up anything, then you have something actionable ( find llmd) and if not, you can move on with pans doctor. our ds5 is on the spectrum. All this mess is exhausting. Also, you may not be seeing overt compulsions so much-our sons are minimal--but the obsessive thoughts and other ocd anxieties were a lot worse than even I realized at the time of the onset bc I didn't know what to ask but his pandas knowledgeable psychiatrist did. Heartbreaking... Han in there
  10. Hi Ssoda, Any possible exposure to lyme and coinfections? Our ds7 gets the rages, responds to ibuprofen -takes edge off- has unspecified lung complaints and reaction to some abx that we (me and doc) thought was a herx. He was strep posted when this mess started in major way but also had tick exposures. Multiple regular lyme panels neg. Igenix tests positive for Babesia duncani. Regarding toe dragging, my kiddo also has experienced documented impacts to his reflexes and gait. You are probably dealing with that too. Might want a pt or ot evaluation which may help document the realness of issues.
  11. Hey SSoda, if antibiotics seemed to make things worse then maybe they were actually working and u were seeing a herx, for us ibuprophen takes edge off.
  12. Babesia apparently has potential to cause strokes-not to alarm you more...my DD had quite a few symptoms on your list excluding head size. Found out to be silent strep carrier. She had feeding issues linked to reflexes being impacted. DS7 started having similar when major onset occurred. We know know he's both pandas/pans. Maybe ped can order anti inflammatory panel and Igenix tests while you identify a possible captain? Does ibuprophen help at all?
  13. Does anyone know if Dr L treats lyme/co-infections or refers out? We just added Babesia Duncan to the dx... Also, please pm me your llmd recommendations. We are in the mid-Atlantic region. Thanks
  14. Does anyone know if Dr L treats lyme/co-infections or refers out? We just added Babesia Duncan to the dx... Also, please pm me your llmd recommendations. We are in the mid-Atlantic region. Thanks
  15. Our dd5 had major delays and sensory processing disorder (no pandas dx. I was just starting to feel like we were getting out of the weeds when our DS7 (then 6) got pandas. We have seen significant and measurable regression in his neurosensorimotor integration. Many of the descriptions you all shared have fit my son (especially momwithocdson) Interestingly, we had by chance gotten an MNRI assessment done on our son one month before the major pandas onset--really just bc we were doing MNRI as an intervention for our daughter and it was helpful for us to do it as a family. This spring we were able to get him OT with an MNRI trained OT and she was able to see specific reflexes which have been hit hard by the pandas --including one affecting his gait--which were developmentally normal before! I think that when brain assault is severe, it wreck havoc on the reflex integration and you may have to do some reprogramming/reintegration to get back on track. Ssod, your post reminded me of my dd and how we (ha ha-I) finally figured out that she had a retained Moro reflex and once we addressed that she made great gains-my point being that some reflexes have to be integrated before others can work correctly. So if the neurological foundation is damaged, you have to rewire/reorganize at the foundational level first. Please keep up the hope and remember that neuroplasticity is real.
  16. Idk, but I suspect that the immune system is likely targeting a real infection instead of incorrectly fighting self. I have lupus and once got a nasty virus and fever and interestingly it burnt out the flare I had prior to o the illness...at least that one time.
  17. So just curious...why ketamine instead of IVIg or plasmapheresis? Ketamine is a heavy hitter and not much fun side effects-even if they are temporary...
  18. I didn't see ibuprophen on your list...have you tried that? Makes a huge difference for our kiddo, even though I'm trying to find a longer term alternative (more fish oil, and going to try the Bravo yogurt, Swiss protocol someone recently posted about...
  19. I'd ask for cefdinr. My son was on it once for a long time while waiting for an oral surgery date. Maybe a 3rd antibiotic worth trying...meanwhile, you'll need to figure out if there is a reservoir of infection (like tonsils) and where things stand with inflammation...
  20. I agree about autoimmune encephalitis. Perhaps that will get them to run tests for inflammatory markers which may currently be elevated and which may help in the treatment...
  21. We had a brief one which we treated with Tylenol and rest and it resolved quickly.
  22. I am trying to do a "case review" of my son's medical journey and I want to revisit the co-infection possibilities. We tested for a bunch things but I want to make sure we didn't miss anything. So, 1) Which co-infections/ infections should we have tested for? 2) Which labs are the best (Is Mayo okay?) 3) If husband had anaplasmosis, could kiddo have made antibodies? Seems crazy but sister is a strep carrier and seems to affect ds. Thanks!
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