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norcalmom last won the day on July 22 2013

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About norcalmom

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  1. You are using the wrong antibiotic. We uncovered mycoplasma after my son had been on zith fir over a year. Search this forum for more info. I used to post alot on this topic, you can search my posts- i shared alot if myco research. You need to track the direction of the titers. BOTH igg and IGM should be declining. The absolute value is less important than the direction. Individuals will vary in the speed at which they decline. Always use the same lab and same test to track this. There are two different ways to measure these antibodies- and you cannot translate between the meathods,
  2. I've been away from the whole scene for a while...but I saw something on this conference today and since I have family in that area I think I'm going to attend. I'd like to see what's new- and hope that some research will be shared that should have been published by now. Day 1 speakers look interesting.
  3. The site is awesome. Its copyrighted 2014 - its pretty new. Its kind of exciting....heretofore all the sites have been parent patient initiated or single doctor (with just a page...) the site is very polished, easy to navigate... The list of its members its great...although I don't see Agalliu on there...hmmm they are asking for funding for him on one of there pages, they should get his name on there too... Thanks so much for posting and finding!
  4. Here's a great 20/20 episode on misophonia. Watch parts one and two. Part two opens with Kelly Ripa, but the guy at the end more severe case. Kelly's would be a very mild case. Part 1 http://abcnews.go.com/2020/video/taylor-misophonia-medical-mystery-teen-sound-rage-2020-16383729 Part 2 http://abcnews.go.com/2020/video/ripa-kelly-misophonia-medical-mystery-disorder-mental-health-2020-16383771 There is scant research. I know for a fact that my son's is pandas immune related. It has escalated with other pandas symptoms and improved (but never disappeared) with related symptoms. Its ver
  5. eamom - where did you find that perianal strep leads to treatment refractory PANDAS (vs regular "treatable" - LOL - pandas?) Thanks! Trintiybella - get your child in for a perianal strep swab asap. I'm pretty sure my son's pandas started this way - before I ever heard of perianal strep. I wasn't until I was in the pandas world for a year before I heard of this. I just put some triple antibiotic ointment on it and it went a way - on and off for 2-4 weeks? I thought my son wasn't wiping down there or cleaning well enough. its got a specific look to it - google images of it.
  6. Thanks for posting both articles eamom and mission mama. I've been off the forum for a long time - any word on the NIMH study? or the mouse BBB/strep paper? Shouldn't these be out by now?
  7. Mom 63 - Sorry, but no. He seemed to improve for a bit, then slid back. The third IVIG was not as helpful as the other two. Seems diminishing returns. I think Swedo talked about tis in a speech a awhile back. But in general, he's not too bad - the misophonia is there. And anxiety (does not handle stress well). Occasional insomnia (but rare now). high functioning in school. Oh, and skin picking - it was bad a while back, he would pick spots on his legs, much less so now. On no meds, or even supplements at the moment. Stopped antibiotics over a year ago. I will get back to supp
  8. I'm sorry your child has this. My son has it too. it's horrible, and has been the one symptom that never relented during his 5 years of pandas. He has it only with me and his dad - its worst with me. It extends beyond eating, he watches me to see if I swallow saliva. I can't be in the room talking with him too long. I've not found much research on this. For some reason, it has fallen to audiologists, but to me this is wrong, because my son's is clearly pandas related. It makes no sense - since only MY chewing /swallowing produces rage, so it isn't the sound itself, I'm pretty sure my swal
  9. Does anyone's immunologist use prednisone before or during IVIG to avoid the side effects? I recall reading that Dr B does this? When does he start them, and for how many days? I'm not talking about after- we did that the last two times. We were instructed to wait and see if he got a headache. By the time he started getting a headache, he vomited up the prednisone. And it was horrible.he went from zero to holding his head screaming and vomiting in about 10 minutes. The second IVIG he was waking up in the middle of the night 10 days after IVIG with nausea and migraine( for 9 days prior I w
  10. After reading Bruhners books I learned at least one thing. Herbs and supplements can effect your immune system. Some things up regulate certain responses( like t-1 dominance, or IL -17) and some up others. Or down regulate them. It's very complicated. From the latest research that Agalliu is doing, as well as reading about MS-(personally think THIS is the disease pandas most similar to, not syndenham chorea- although SC was good starting point) we need more info on what reactions are specifically out of whack in our kids before doing a bunch if stuff. I got all excited and bought a host if su
  11. Has anyone worked with an advocate to work on their behalf to get insurance approval? I'm talking about a professionally paid person that knows the ins and outs - laws- the process, ect. Our preapproval was denied last time and I gave up during our second appeal - at which point we decided to try some other things. We are now ready to try for IVIG again, and I just got my first letter saying they don't have enough clinical information to tell me if they're going to approve it or not. If anyone has used someone that worked for them , and is familiar with pandas/immune issues, if you coul
  12. I haven't read the entire article just the abstract, and as I recall Cunningham herself and her last paper did disclose that her findings did not correlate with previous findings in regards to D2 (I think?). It's your most recent paper and she talks more about the ratio of D1 to D2. He doesn't mention can kinase II or anti-lysoganglioside or D1, and his testing group is very small. There could be a great many anti-neuronal antibodies that are not tested for, which is why I think Dr. Cunningham uses the cam kinase more heavily than the specific anti-neuronal targets. It would be inter
  13. Years ago when we were first discovering pandas and what it meant, I came across an article/post by a mom who wrote "my child seems to be repulsed and disgusted by my presence, yet is so needy he can't be separated from me for more than a moment". That was very similar to my child too.
  14. Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research. I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.
  15. I'm so happy for you qannie47! Thats fabulous news! this is a very interesting topic - I wonder if the lumbar punctures that Dr Swedo is doing as part of the study is testing for these bands, and their correlations to Dr C's tests. Could this be the definitive test for all of us to get insurance approval? Anyone else had a puncture that measured "o bands"? (whatever those are!)
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