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msegal7

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  1. Is there more? I finished what is here and I'm so curious what happened next.
  2. Wow! I am on the 5th entry and I'm completely blown away. This is the kind of thing I've long thought of writing but never did. I could not have done it so brilliantly! The writer is a gifted story teller. I know what's coming and have lived through a similar and yet I can't wait to get back to reading. Thank you so much for sharing. I'm going to binge read more entries.
  3. Hi all, I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus. I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS. My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep
  4. Hi, First I want to say that I have felt like you feel more times than I care to remember. Hopeful for a time, only to have my hopes dashed by backsliding. I'm sorry you are going through this. I can tell you that each time this happened, we did not see a resolution in ticcing or other behaviors until we made a protocol change. I don't know why that is, but I have hypothesized that there is some bacteria that is being treated by the current antibiotic and then something else rears it's ugly head. The approach is certainly not one size fits all. It's almost a game of trial and error and the
  5. Thank you so much for posting. I am not on fb, but would really like to read the full article. Can you email it to me? Please let me know how to proceed. Thanks again.
  6. Is your son on Doxycyline? My son had a very similair and disturbing reaction to a burn on his finger and toe nails while on Doxy.
  7. I have 2 pans kids and a clotting disorder that was not diagnosed until after all 3 of my kids were born. Factor 5 here too. That is an odd coincidence.
  8. writing with an update and curious if any of you have had this experience. My DS12 has been through several different antibiotics which all seem to work miracles for 2 weeks and then tics, anxiety and ocd return. Dr. T agreed to try Minocycline and it was the best result so far but again backsliding at 2 weeks. I don't think it was a herx 2 weeks in but I could be wrong.....added rifampin 4 days ago and tics are going nuts. The poor kids could barely keep his eyes open last night. It is very hard to watch. I started giving ibuprofin again this am to see if that would settle things down. It's h
  9. Hi all, I've posted here before but I'm having some trouble figuring out what to do with my DS12. He is being treated for chronic Mycoplasma by Dr. T. We have initial remarkable success after a couple of days on each new antibiotic but after 2 weeks we have a slide. His primary symptoms are Tics, anxiety and OCD. We started Minocycline 2 weeks ago and he was back to his pre pandas self in 48 hours. I was holding my breath because I've seen this before....the last 2 days I noticed he is slipping. I know many talk about a saw tooth recovery but I can't help thinking he needs another antibiotic
  10. Dedee, We are seeing pretty good results on the azith. He is feeling more like himself and if I look at the big picture rather than day by day, he is making progress. It is the sawtoothed recovery that many speak of and on a daily basis it's hard to really evaluate. Dr. T wants to switch him to Minocycline and I am willing to try it but I am afraid to take him off the azith right now. I think we will hold steady for a minute and see how he responds. It is my understanding that most kids do better on a "cocktail" of antibiotics when fighting myco pans. I haven't yet tried that but am certainly
  11. Dedee, So grateful for the input. I wonder if you could tell me your regimen on those particular drugs? Did your child have tics in addition to OCD and anxiety? Have you seen a return to baseline on that particular cocktail? And lastly, how long have you been giving this combo and how long do you expect to continue? I am learning as I go here. Thanks for all your help.
  12. Hi there, I am writing about a newly diagnosed case of PANS. I have been reading on these websites obsessively for the last 2 months and the information has been a ray of sunshine in a horrible nightmare. My son (12) was a happy, well adjusted, sweet, easy going boy when I noticed sudden onset of tics, OCD, anxiety, insomnia and "hearing voices". The symptoms began to ramp up until a friend had me read Saving Sammy. I was shocked because this was something nobody had mentioned. I started him on 1000mg augmentin bid and he responded instantly. He was back to his old self in 48 hours.....all s
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