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Everything posted by MountainMom

  1. Hi jep1978. That's an excellent question. I was just going to post that question under a new topic- and I'm really interested in other people's experiences in this. I should have asked our doctor when I was there- but I was too overwhelmed. I think the reason is because his symptoms were classic PANS- OCD, anxiety, tics, etc. But I'm not poitive. We didn't do the Cunningham Pannel. I'm going to ask her in an email. I'll let you know what she says.
  2. Hi, I'm so sorry your going through this. My son just tested positive for Lyme, Babesia, bartonella. Our Llmd prescribed Zithromax and Malarone. I don't know if they will help, as we aren't starting them until next week.... I don't know anything about certain- sorry!
  3. Bobh, thank you. We are very lucky to have an (excellent so far) llmd. I guess it was mostly wishful thinking, that treating the infections would illiminate the PANS. The other medication they've put him on is malarone. NYCMom, how did you know when the Lyme and co infections were gone? It seems impossible to know.... How do you know if there are other infections going on post treatment. I'm just having trouble understanding how we will know if these infections are gone. Thank you.
  4. Yesterday, after three years of struggles and misdiagnosis we finally got our test results back and met with our doctor. My DS(7) is positive for Lyme, Bartonella, Babeosa and received a diagnosis of PANS. I am hopeful, because my son will finally receive the treatment and support that we desperately need. I have a couple of question that I'm hoping those of you with experience with these diagnosis can answer. First, my doctor is treating DS with Zithromax and another antibiotic (can't remember the name offhand). Does this make sense? DS is not currently in a flare, though of course, he is symptomatic.... Second, if your child had tic borne illnesses, once you treated those infections, did PANS flares continue? I'm terrified of what the next flare might bring. Thanks so much for any insights.
  5. Hi Sirena, Thanks for the info. Why do we avoid the folate enriched foods? Because he can't process that type of vitamin b? Thanks for your patience!
  6. Bobh, thanks for the link. So confusing! I'm way over my head in all of this. My son's B6 and B12 were really high and I'm trying to make sense of that.... Thank you.
  7. Hi I'm new here and have spent the past few weeks immersing myself in the wealth of knowledge you have all made available here. It's been incredibly helpful as I try to learn everything I can about PANS. So first I just want to say thank you. My question is, are most PANS kids compound heterozygous for MTHFR? Please excuse me if this is a ridiculous question- I've been barely able to understand the ginetic mutations. I'm asking because I received some of my son's test results and he is compound heterozygous. Also, can someone explain why it's important to know your mutations? So confused! Thank you and please excuse my lack of knowledge.
  8. Thank you so much for sharing your story. I really appreciate your insights. How long did it take from beginning treatment until you were at 95%? As someone in the beginning stages of all this, working on diagnosis, I'd love to know about length of recovery. Thank you so much.
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