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  1. Seeing Dr Lewis tomorrow! Tips?

    Will do. We were on the wait list for a September appt but got the call last week. Way sooner than I expected.
  2. We are seeing Dr Lewis tomorrow. Anyone can tell me what to expect? Ds is 11 and been diagnosed since 4. We are hoping to get him off antibiotics and start treating more naturally and healing gut. Is Dr Lewis hardcore about gluten/dairy? We've been down that road many times and won't do it again. Any advice on what to expect or what to ask would be great
  3. We have an appt for Dr. L in August and are on the wait list. Thank you for the reminder to address the methylation. I do feel like that's a huge part of it and hat we have neglected it. Is there a cheat sheet for those of us in dire need but lacking brain cells to sort through it all?
  4. Thanks. Yes, we have decided it's time to take him off abx. We plan to do that starting in May in hopes of strep season waning a bit. The abx keep him from tics and OCD, but the irritability and mood are not improved at all. If anything, worse. I just can't keep going like this.
  5. Ds has had pandas diagnosis for 7 years. Last three he's been on daily azithro. I can't keep giving him daily antibiotics. I feel a little Twinge of guilt giving them to him every single time. I feel like they have wrecked his gut bacteria and effect his mood. He's depressed, negative, irritable. I want my happy boy back.
  6. 11yo DS has been on azithromycin for 3 years. I am ready to try another route. (Reason being that I think his gut health is causing major behavior issues. Depression, anxiety, negativity). He's been getting worse and worse over the last 3 years. Please recommend an amazing doctor that can help us. We will fly. Eastern half of the U.S. preferred.
  7. I was diagnosed with strep on New Years Eve through rapid culture. I had a cold the week prior with sore throat and ear ache starting on Dec 30 I've been on Augmentin for 6 days and am still in excruciating pain. My throat looks like ground beef. Daughter was diagnosed last night after taking her just to be sure (no symptoms) Is there anything I can do to get rid of mine aside from antibiotics? I can't keep going like this.
  8. So I've been buying the home strep tests off amazon for years. Between today and yesterday I tested my throat four times. All negative. No faint line, nothing. Went to walk in and got a positive rapid test. My throat is on fire. Swollen and in so much pain. So disappointed with home tests. I know it's not user error, I swab the heck out of myself.
  9. My 9 year old DS was diagnosed at 3. Onset was triggered by undiagnosed chronic strep and manifested in compulsive urination and a leg "scratching" tic. We are managing by seeing a pandas friendly doctor 4 hours away. She has him on daily Azithromycin as well as a cur cumin supplement and nystatin. Here we are in the thick of what seems to be a pandas exacerbation in his little sister. She is newly 5 and never shown any indication of this before. For a week now she is compulsively "urniating". Runs to the bathroom every 10 minutes and tries to go. At the same time, she's suddenly germaphobic and fearful of bugs (SO unlike her). Our local pediatrician is now our ex pediatrician. She refused to discuss pandas with me and "educated" my daughter about germs and holding her pee. Our pandas friendly doctor has graciously prescribed an Azithromycin trial and labs. She is on day 6 of Azithromycin and ibuprofen with zero improvement. Labs won't be back until weeks end. With DS, his symptoms vanish after 48 hours on antibiotics. The facts that hers are not improving has me in near freak out mode. I've suggested switching abx and am waiting to hear back. Suggestions?
  10. Positive rapid today; on Keflex

    Thanks. It was a positive rapid. Why do you ask? (Just curious)
  11. Positive rapid today; on Keflex

    Thanks all. His pandas friendly doctor isn't getting back with me. I'm so tired of not having help when he needs it!!! Shopping a new doctor now. In the here and now though, is the azithromycin for 5 days followed by throat swab at our pediatrician all I can be doing? I can't see any other options. I do have augmentin I can try again??
  12. Positive rapid today; on Keflex

    Thanks. I will let you know what pandas friendly doc says if/when I hear. Will definitely retest after zithromycin. We tried Augmenting this spring and he just couldn't tolerate it. He threw up or had a terribly upset stomach every day no matter how much he ate with it. (It's hard to get any food in him, so it was just so hard)
  13. DS started complaining about a sore throat last night and looked awful this morning. Off we go to walk in. Positive rapid. He's been on daily antibiotics since December, for the last several months he's been taking 250mg Keflex 2x/day. He's 57lbs. What now?? He's getting strep on Keflex?? The walk in clinic prescribed 250mg azithromycin 1x/day. I put a email out to our pandas friendly practitioner, but it's usually a wait for a week situation there. What should my plan be here? I'm at a loss as I was going on the assumption that the Keflex would keep him from getting strep.
  14. Thanks all. Got to talk with her last night and she's prescribing more abx. Breathing now.
  15. DS's practitioner who is PANDAS knowledgable and has had him on abx since December has stopped his abx. I've been calling, emailing and leaving messages saying that I don't agree with that decision as school starts in a week and I know he'll get strep as soon as it starts. He NEEDS a good start to this year. Last year he got strep the first week of school and it just set him up for a rough year with that teacher. I can't seem to get my call returned or emails answered and don't know what to do. We have no one else in the area that treats pandas. I'm willing to drive, but obviously can't get an appt with someone new in the next few days. Advice? Any way to prevent an active infection without abx? He's on vitamins b, c, d and antifungals. What to do??