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dharper

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  1. Hi Chubbermommy We are coming up on 9 wks since we started my daughter on the high dose niacinamide. She is still doing very well--at about the same place we were at 6 wks. She still has a little eye blinking, diaphragm tics, and some throat clearing but nothing close to the constant facial, arm and diaphragm tics she had before. Her mood and energy level remains great. We haven't increased the dose (still at ~1000mg/day given throughout the day). We have wondered if increasing it some would bring more improvements but we are very happy with where she is at right now. Also still giving her
  2. Thanks 911rn and rowingmom. Niacinamide does not cause flushing like niacin does. Dr Klinghardt's protocol mentions that both are effective against lyme so we tried the niacinamide first as it is more tolerable. Since it seems to be working we haven't tried my daughter on niacin. I'm not sure how she would tolerate the flushing but we haven't had to go there yet. One thing that seems to be important is dosing throughout the day (the books I have ready on the topic mention this). At first we only dosed once in the morning and once in the evening. We did see improvements, but even more
  3. We recently (6 weeks ago) started my daughter (9yo) on niacinamide and are finding surprising major improvements in her PANDAS/PANS symptoms (tics and emotional lability/irritablility). She has had consistent facial, arm and diaphragm tics for over a year now (she does not have OCD). She started having tics when she was 3yo, but until approximately a year ago they were pretty mild/tolerable. She has tested IgM/IgG positive for mycoplasma in the past (no positive strep). We have tried various treatments (clarithromycin, augmentin, azithromycin, Mg, Vit B6, CBD, HDC helminths, sovereign silve
  4. Thanks for posting this info. My daughter's main PANS/PANDAS symptoms are motor tics which have been very stubborn to get rid of. Sickness/infection seems to make them flair. We have tried antibiotics but they haven't really helped a whole lot. I am currently working on healing the gut as it seems this is where we are having the most success (althought her tics are not completely gone they have subsided). Can I ask where you order DAO from? Also did you notice any herxing type reaction (ie increase in tics) when your son started taking this? Thanks so much.
  5. Dr Niran Al-Agba at Silverdale Pediatrics Silverdale, WA 360-692-8588 My kids have only been seeing her for about a month but I am very impressed! She is very interested in learning about PANDAS and willing to treat with long term antibiotics. She understood the importance of treating quickly and not waiting for a positive strep test.
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