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jan251 last won the day on November 21 2017

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About jan251

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  1. jan251

    Cunningham Panel value

    The Cunningham results (high anti-tubulin) confirmed our inclination to continue with HD IVIg in the hope of treating autoimmunity, "resetting" the immune system. Apparently anti-tubulin is associated with demyelination. However, that result was three years into PANDAS. The first result was only high CamKII. My understanding is that this is a common change over time, CamKII falls (it fell a bit from the high result when we ran the Cunningham 6 months into PANDAS, but not all the way back to normal) as some of the others in the panel increase.
  2. jan251

    PANDAS and Sinus Surgery

    Sinus surgery was easier than the tonsil surgery (my son is 14 y.o.). Tonsil surgery went ok, just that the recovery can be a bit painful in the first 7-10 days. The rhinologist was annoyed that the ENT who did the tonsillectomy had not looked at the sinuses (our immunologist ordered sinus CT a few months after the tonsillectomy and then sent us to the rhinologist). Rhinologist said sinus and tonsils should have been done at the same time.
  3. jan251

    PANDAS and Sinus Surgery

    My son had lingering infection (doc found pus in the sinuses that did not show up on the CT). But, he did not have official chronic sinusitis, just post-nasal drip. It's hard to say whether that has resolved. Full recovery is said to be 4-6 weeks, but it was really the first week or so that was the most stuffy (swollen inside from the surgery).
  4. jan251

    PANDAS and Sinus Surgery

    We did the sinus surgery in Sept. He needed to be fixed in there anyway. We saw a rhinologist, a sub-specialist of ENT, who used the most modern computer-guided techniques, no splints, no packing, back at school 4 days later. He was stuffy for a few weeks (which was not unusual compared to how he was before that, so he didn't complain much). The first week was the hardest. The culture of infected areas in the ethmoid and maxillary sinuses didn't yield anything, unfortunately. No improvement in OCD, but I have no regrets. His dad could use the same surgery Three months later, his ASO was down into the 200s, the lowest it's been since our PANDAS adventure began >3 yrs ago. (Had tonsils out last spring.)
  5. jan251

    Coimbra Vitamin D Protocol for PANS?

    Vitamin D supplementation is controversial. It is theorized that supplementation further depletes magnesium in order to process it. If you try it, please report back!!!!
  6. Zith and mino are known to be ototoxic (can increase hearing sensitivity issues). Have they helped the other pans symptoms? Maybe try an increase in NAC? A separate issue, but D3 makes my panda worse, so we don't use that.
  7. Daptomycin, mentioned in that second link, is an IV abx. Dapsone is the oral version. My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid). He has a paper on it. https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159 From the anecdotes I've read, like anything else, it helps some and not others. Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities. For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190
  8. jan251

    T&A viable before sinus surgery?!

    Can you do the whole thing privately, do the T&A and sinus surgery in one operation? That would seem to make the most sense, at least with what little I know. I suppose you might have to pay privately for the whole thing and I have no clue how the system works there, but it may be worth asking the ENT if she could bill separately for the T&A and then bill NHS for the sinus part. Obviously you'd need a sinus CT first, and I have no idea how long that takes to schedule in the UK (here, it can be scheduled very quickly; I think we did ours the next day).
  9. jan251

    T&A viable before sinus surgery?!

    The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A. The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it. My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT. The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery . New doc felt he could tell just by looking at him that he was stuffed. However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy). I was surprised that he was surprised that this wasn't handled earlier.
  10. jan251

    Turning Back Pages

    I would think that timed with a cold, that is more likely to be symptoms of a flare from the cold than symptoms of turning back of the pages from IVIg. But of course, we can only guess. I would also think about getting checked for strep.
  11. jan251


    Dr. Rosario Trifiletti in Ramsey, NJ is nationally known.
  12. Do you happen to have any info about the mutation, such as a gene name or rs number? Thanks! (we are now at the treating sinus/considering PEX stage of this mystery)
  13. I would consider adding saccharomyces boulardii. S. boulardii is a yeast that is known to help with c. diff and diarrhea generally. My kiddo did not do well on s. boulardii the few times I have given it to him (increases his OCD), but it can fix diarrhea quickly. I'd try it as a one-time dose and then see what happens. Florastor is a brand of s. boulardii. Jarrow also sells a less-expensive one that we have used.
  14. You are in the UK? There is a FB group https://www.facebook.com/groups/199211800204411/