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Everything posted by norcalmom

  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!)
  16. What confirmed it for us was ultimately the "pandas test". Thats the kind of proof I needed in order to proceed with IVIG (because that frankily was very scary to me). My son did not have strep or raised titers, so his diagnosis was not as straight forward as some. Moleculera Labs does the testing. At the time this test was a "study" being run my Dr Madeleine Cunningham - a well know researcher that studies auto-antibodies. You can learn more about the test, Dr C and the anti-bodies by googling her and searching this site. The used to refered to as the "Cunningham test" (its actually
  17. No experience, but did hear a conversation on NPR about it a couple days ago. I would look on the Marfan group website for experienced doctors near you.(sorry they talked about the site and the foundation (?) that runs it, but I wasn't paying too much attention. The show maybe in their archives. Is it genetic? If so that would be simple test for diagnostic confirmation.
  18. Correction Meriva from Thorne - http://www.thorne.com/articles/meriva.jsp
  19. We've used Minerva-it's a liposodal curcummin. I think the research indicates your need massive amounts if turmeric to make a difference. I've cooked with my neighbor from India(awesome food) they buy bags of turmeric-(like 5lbs!) and they cook with handfuls. Everyday. That's what you need if you want benefits using turmeric- not a tiny pill of it. I can't remember the cost, but you can google it. We didn't use religiously, I used it during flares instead of, or along with Advil, but when we started we did almost everyday for a while.
  20. I'd have to agree with Airial95, on the IVIG. He appears to be about 3 months post. You mentioned Dr. K, so he probably had a slightly lower dose- 1.5 instead of 2.0. No one knows if that .5 makes a difference. And even Dr K would probably agree that if he is still having severe exacerbation a at this point, he may be one of the kids that needs more than one dose, (and maybe the 2.0 dose- that's my addition). Also- I think our kids run the gaummut of phychological symptoms- including Bipolar. They can appear OCD, Depressed, Tourette's, Paranoid, Anorexic, ADD, Autistic, even psychotic
  21. Also- they usually approve for low dose IVIG. Definite discussion with your pandas Doc about low vs high.
  22. Beth, That's a very good question. And somewhat open to interpretation. There's a blood test available from Moleculera labs- that, along with meeting with a doctor that's a pandas expert- there are only a few of those, whike there are more and more docs that help treat- your case is more complicated without the "sudden onset" is see an expert. And check out Moleculera Labs- new lab run by one of the premier pandas researchers. Best if luck, and post of you need help finding a good pandas expert in your area.
  23. Doxycycline, vit D and methyfolate. ESP. The doxy. High doses for Almost 2 years, but did take breaks because its tough in the stomach, and has high probability of sun sensitivities- so went totally off for the summers. DS titers were super high- 2960 ( norm under 300). Went slowly, slowly down- until he started hi dose Vit d and methyfolate/b-12 supps( not very high does, but every couple days - all he could tolerate) and the the titer dropped apprix 50% in 3 months. He was off all antibiotics those 3 months. Was also taking some EGCG ( green tea extract) and occasional curcummin...yuc
  24. Great find Peglam! Thanks for posting. It's a very small study, and very specific to strep, and Turkey, but exciting to see they are looking at this in our kids. I guess Turkey has a lot of untreated strep, (according to the article) and maybe a genetic variation in their population (my interpretation if the data- since only done on Turks). Go to the SNPepedia page LLM references above (thanks LLM!)- having the AA allele is associated with a number of risk factors, as well as even some benefits(lowered risk if MS) And- if you read the psoriasis summary- if you have the AA allele and you're
  25. Thanks for posting LLM. Not sure all that was said in the thread since it was edited, but I find this articulate young man's message very relevant, and I plan to read his book. Almost all our kids have OCD, weather it's for weeks, months, years, or life, and insights into their world and how to support them as parents is always helpful.
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