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Everything posted by PANDASmcnuggetsw/fry/coke

  1. Tiredmom...I did not know the connection immediately either. The the lights went on went we saw an immunologist that said it takes at least 20 days for the body to mount a defense to a vax. I went home and looked at our calendar and it was 20 days exactly from vax to flip of switch PANS.
  2. PS and to clarify..the timing for DD was VAX led to very swift Myco-p infection...led to flip of switch PANS.
  3. Since coming back from Rothman, I've had lots of ideas swirling around in my pea brain :-) and today I am reading all about vax injuries and stunned to see OCD, encephalopathy and rhinitis related to her HEP A vax and others she has had in the past. So...if the infection of myco-p has cleared I thought maybe we should see a doc who knows something about vaccine injuries and how to treat them. What type of doc would this be? Biomedical? DAN? others? What is the difference? She does not have autism, but the more I read about vax, I am just sickened as to the adverse effects, how similar th
  4. LLM~ That is fascinating. I have never heard of that. She has been on N-AC for over a year, but not the Mucinex. I'll look into that and your articles. Bigmighty, Thank you for the input on the taper. May I asked who did it for your son? There are no doctors around here that are PANS literate, but maybe someone else could help us out. Thanks!
  5. PowPow, Thank you for the encouragement...and YES they did. Not easy at all.:-( But I have learned that we (daughter and I) can be strong even in the most difficult times...
  6. T.Mom, It was Rothman that ordered it so wasn't Dr Latimer (and I forget which other Dr that does it) There were a lot of tests, including C3D Immune Complex and Immune Complex Detection by C1Q Binding. These were the two that Rothman seemed to be focusing on, indicating "plasmaphresis and further IVIG would not be helpful." She did have one out of 6 phospholipid antibodies termed "EQUIVOCAL", meaning not in the positive or negative range. I am not sure what that means. As for abx, she was on them for almost 2 and 1/2 years and b/c she was still suffering so much ON them, I had n
  7. We have recieved lots of bloodwork and results after Rothman and there does not appear to be present infection. I think we finally killed the myco-P that had been there for so long after 2 1/2 years of ABX! We have two ivigs behind us and no one wanting to do it again. (Docs don't think it would be helpful at this point) Her bloodwork/immune panels don't show that she would be a good candidate for plasmapheresis or continued ABX. So we are off the abx and doing CBT and lo dose ssri for the very first time. Docs at Rothman were adamant that when this all hit at age 12, it was PANS certainly
  8. I did see a site that documented a link between Hep B shots and autoimmune illness and one of the specific symptoms observed from the autoimmune illness was neuropsych symptoms. I'll try to find it tomorrow...it's getting late here. Ours was Hep A. and Dr K and Dr T saw it as a nexus to her illness, especially given the timing. I also found on a vax injury site that Hep A and B caused similar injuries, but it was more vague. Is there a specific vax you think triggered it all?
  9. PANDAKID11, I am so sorry your son is struggling so much. It can be so agonizing to see your child suffer so much. I don't remember seeing your son’s total history, but it sounds like strep is your culprit? Everyone is answering on the basis of what happens with strep as you get older. Of course it’s not just strep. Our daughter is 14 and has never showed one strep infection in her life. (I know hard to believe) but we have a pretty good record of her medical history. For her it WAS a vaccine, which lowered her immune system, letting Mycoplamsa-p waltz right in and set up home for s
  10. p.s. DD did have obvious face of dread heading over every morning to Rothman and I could not blame her. I had the same feeling going on...
  11. We stayed at the East House Just got backlast Saturday. We were supposed to be at the West, but got in at 11pm after flying all day. It worked out great and we stayed there although they said we could switch to the West if we wanted to. We also had a back up reservation at Courtyard and cancelled that after visiting. It was a very low rate given to us by RMH. But the experience of RMH was well worth it. No fits by daughter here, but I know if she had one, they would have rolled with it just fine. We gave the RMH some bouncy balls b/c they needed them at thier playground and they have a th
  12. WARNING...diehard homeschooling parent here...Nothing below is meant to offend anyone! Read at your own risk! Similar to POWPOW and MOM Paisley, we have always homeschooled our 7 children prior to our life with PANS. It is unbelievable to me how this school has proceeded in your daughter's case. She is your child, YOU have the right of decision-making in her education. It is your right to homeschool her should you choose to exercise it. Like others have said, homeschooling is not for everyone, but I think we can all agree that no one loves your child or has their best interest at
  13. Thanks Philamom...it is good to know we are not alone. Your daughter has some very difficult struggles as well. Thanks for the website. I'll check it out. Hoping things get better and brighter for all of us!
  14. It was one week, trying to cram as much in as possible. Double appointments per day etc. I think so much more came out in ERP~~ it was just overwhelming.
  15. We just got back from Rothman. Yes the RMcD House was wonderful and I'd do it again in a heart beat. It is so good to be home after the hard work done at Rothman. Agnes26 are you on the board these days? We just missed you by a day I think. I'm hoping all is well. No clear answers for us yet, but lots more bloodwork and ct scan to do. The docs there say classic PANS for DD originally, but now that she is chronic, need to treat like regular OCD (ERP and SSRI) while continuing to look for infection. Also, switching to a new abx she has actually never tried.. minnocin. After 2 and
  16. Agnes26~~~ I think you may be at Rothman now? I sent you a PM with my cell,so we can get hold of each other. Shoot me yours via PM if you see this. THANKS!
  17. Thank you~~ I had heard some do that with IVIG, but did not know that could be done for PEX!
  18. Thanks everybody...I'll work on the dog when we get back from Rothman. I've been going through almost 2 1/2 years of paperwork to figure out what I should copy and bring. it is just mindblowing all that we have gone through in that time. Such a sudden onset. Our lives totally changed.
  19. The first time my hubby was a strep carrier and he did abx. Never tested dog. How do you get this ordered without vet thinking you have three heads?? :-)
  20. That's interesting Beeskneesmommy. Our DD also shows strong symptoms when people in the home are sick. And even the apparent common cold! I recenly took her off the abx after 2 yrs and 4 months of it, b/c the OCD and suffering were still so strong while on it. It was a high dose too. Now that she is off of course, there are many colds in our home and she got one too. Worse OCD and sorry if TMI, but while everyone has regular goobers, hers are a starburst orange color....
  21. It's been a long while since we checked for myco-p, strep and the usual culprits and it is probably time we get them all checked again. ( STILL trying to get hold of Dr T., but that's another story) Anyway, I wonder, can you have no infection generally and still be left with the PANS, severe OCD symptoms? Really, since my DD's original exacerbation in 5/2012 she had all the classic PANS symptoms, the frequent urination, the OCD, the separation anxiety, the deer in the headlight look, etc. Now we are left with severe intrusive thought OCD of the worst kind. But I wonder if it is possoib
  22. I meant to add that I'm glad your son is doing better too, but I hit send to early!
  23. Ditto to what you said. Lots of amazing and helpful people here,for which I'm very grateful!
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