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jan251 last won the day on November 21

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About jan251

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  1. 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!!!!
  2. 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.
  3. 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
  4. 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).
  5. 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.
  6. 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.
  7. daniel

    Dr. Rosario Trifiletti in Ramsey, NJ is nationally known.
  8. 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)
  9. 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.
  10. You are in the UK? There is a FB group https://www.facebook.com/groups/199211800204411/
  11. Sinuses - I don't know if this will help, but... my child has had high strep titers for three years. In trying to get at the source of the infection, we are now looking at sinuses. He only has mild post-nasal drip, nothing obvious, but our (pandas-friendly) ENT noted areas of possible infection on a sinus CT. (Sinus CT was ordered by our immunologist.) We are doing Sinus Rinse with antibiotic gel, but there may be more over-the-counter approaches to try. I don't know whether we will end up doing sinus surgery or not - too soon to tell. Bottom line is that if you have sinus issues, I would get on that right away. One of the theories of the mechanism of PANDAS is that troublesome antibodies cross over into the brain via the olfactory bulb. Improvement of psychiatric symptoms in youth following resolution of sinusitis http://www.ijporlonline.com/article/S0165-5876(16)30380-9/fulltext Sinus problems are not uncommon - I would try to find a really good sinus specialist (typically an ENT). That doesn't have to involve explaining the whole PANS/PANDAS thing. Besides Sinus Rinse and over the counter sinus approaches, you can also swab your own throat for strep - swabs available on Amazon (then if positive, take yourself to a doc or urgent care). For an immunology workup, you'd need to see a doc.
  12. For what it's worth, my kiddo does not have any tics as far as I can tell; OCD is his main problem. That doesn't seem uncommon at all among the PANS/PANDAS families on Facebook though I have not seen stats on that. He is very strong in math though he struggled to pay attention for a year or two after onset. IVIg helped immensely with attention and executive function and he's back on track academically, still advanced in spite of the lost time, and in spite of the continual OCD. (Anecdotally, there seem to be a lot of gifted and twice-exceptional kids with pandas.) How old are you, Hitman? There are a number of Facebook groups for PANS/PANDAS, several for "plain" PANDAS, PANS with Lyme, treating with herbals, local groups for particular areas/states (these are great for finding doctors), and on and on. I think I'm in about 9 groups, LOL. Most are parent groups though there may be a few groups for teens and I may have seen one mentioned for adult pandas. The Facebook groups are far more active than this forum!!
  13. No. A person could have OCD instead of, or in addition to, tics. I'm not knowledgable about tic movements. What you are describing with the staring spell sounds more like a seizure??
  14. We haven't yet. We did 11 infusions of IVIg before the T&A (backwards, but the data on T&A was mixed and my child has an immune deficiency, so IVIg made sense at the time). Strep titers are still high after T&A, so we are trying to track down the source of that.
  15. My *very rough* understanding (which might not be correct) is that sinus infection is basically mucus/gunk that doesn't show in MRI. On the CT, there were areas the ENT pointed out to us within the sinus cavities that she believed to be infection even though the CT report from the radiologist didn't mention it. I have little to zero understanding of sinus cysts... I agree about the T&A. We just did that a few months ago! But we are seeing a different ENT for this. On the other hand, maybe sinus surgery with T&A would have been too much at once.