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Everything posted by Hope4Ben

  1. My son is 9 has PANDAs/ Lyme/Autsim and GI problems. He has so many overlapping symptoms of all and its time for a new doc. He has stalled out and still getting a chronic Folliculitis infection on hairline of forehead which always triggers the pandas rage and OCD. I have been at this 4 years with saw tooth progress but lately getting lost in the treatment and need a new set of eyes. Any recommendations?? TIA
  2. My son has been experiencing the same thing nearly 6 days know, I finally remembered what helped in the past was activated charcoal (had already tried taurine, probiotics, advil, magnesium) I pulled it out and gave him two capsules about 20 minutes later =calm. Took him off the edge. but had to wait two hours before you can give anything else. Activated charcoal and oldie but a goodie.
  3. I think I posted this question before but gonna do it again. My son has chronic infections his whole life. He has been improving dramatically over the last 3 years under PANDAS treatment except for one thing. Impetigo on scalp. It cycles and is resistant. The blisters have been cultured and do not show to be resistent when grown in lab but I am here to tell you they are since 2010. He is treated with oral antibiotics that work while taking it (keflex) then it returns. He is treated with topcial clindamycin which works only while on his head if you give even one day a brea
  4. Everytime my son gets neck pain he has strep. We put him on Penn VK and the tics go away within a day or two. He has PanDAS. I thought for years he had tourettes that was intermittent then I noticed a pattern it was always when he was sick. Then all heck broke loose and I figured out he had pandas. You should consider strep and see if the symptoms remit with antibiotics. I am not pushing antibiotics but I have heard what you are describing from many families and lived it myself and it was always strep under the radar. Check out the pandas forum just as a precaution.
  5. I notice I have to rotate probiotics on my youngest we can't use the same strain everyday. We alternate between culturelle with half sach b on one day and then abx support on another day which has 4 strains. This keeps him going and occasionnally have to add in miralax or oxypowde but never both.
  6. Yes, I was group B positive both kids born with iv antibiotics on me, both have pandas. Both have a bad relationship with strep. Both are doing well today with longterm abx. Oldest is completely off abx. Both were very sick as babies and suffered allergies and gi problems.
  7. When we tried steroids it sent my son into a tail spin. I was able to have him quit steroids cold turkey because it had only been 3 days. i think after that time frame they have to be tapered. Anyway we increased his abx (zith) and he pulled out of it in less than 24 hours. I won't try steroids again for that reason. He is fabulous on just abx and sometimes can even come off abx . Maybe you can increase his abx for today and see if it calms things down. It worked for us. Your in my prayers.
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